Disability inclusive budgeting in Indonesia : a pathway to

difabel citizenship

Author:
Tsaputra, Antoni
Publication Date:
2019
DOI:
https://doi.org/10.26190/unsworks/21637
License:
https://creativecommons.org/licenses/by-nc-nd/3.0/au/
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Disability Inclusive Budgeting in Indonesia:
A pathway to difabel citizenship

Antoni Tsaputra

A thesis in fulfilment of the requirements for the degree of

Doctor of Philosophy

School of Social Sciences

Faculty of Arts and Social Sciences

December 2019
 Thesis/Dissertation Sheet

Surname/Family Name : Tsaputra

Given Name/s : Antoni
Abbreviation for degree as given in the University calendar : PhD
Faculty : Arts and Social Sciences
School : School of Social Sciences
Thesis Title : Disability inclusive budgeting in Indonesia: A pathway to difabel citizenship

Abstract 350 words maximum:

This thesis contributes to an emergent body of literature in disability studies that examines disability in the global South. Through
investigating Disability Inclusive Budgeting (DIB), this thesis contributes to understandings of disability inclusion in government
budgeting policies for development and its implementation in Indonesia as a country of the global South.

The thesis investigates the potential of DIB for realising disability rights in Indonesia post-ratification of the United Nations
Convention on the Rights of Persons with Disabilities (UNCRPD). The study uses multi qualitative methods including documentary
desk-based review of policy documents, semi-structured interviews with government officials and disability activists, and focus
groups with grassroots disabled people.

Three major findings are presented that contribute to the disability and development literature. First, the thesis finds that DIB was
developed by the Indonesian government in response to international instruments such as the UNCRPD, and the Sustainable
Development Goals that require them to implement disability inclusive development, and associated with the failure of welfare-
focused approaches to achieve rights for people with disability. Second, the thesis identifies the challenges that have contributed
to the slow progress of DIB implementation, described as paradigmatic and implementation issues, and identifies factors that can
improve its implementation. Third, the thesis introduces the concept of difabel citizenship to capture the expectations of disabled
people in Indonesia in relation to inclusive development. Using the framing of difabel citizenship, the thesis argues that DIB
represents more than just a disability mainstreaming policy, but rather has the potential to enable disabled people to become
active agents of development and therefore play a major role in realising the rights of persons with disability in Indonesia.

Drawing on the concepts of disability rights, inclusion and participation, disability citizenship, recognition and legitimacy, the thesis
makes important interventions in disability, development and citizenship studies, and has significant implications for disability
mainstreaming policy in development. Budget allocation through disability budgeting is not enough for successful disability
mainstreaming in development. Disability mainstreaming policies must enable full participation of people with disability and their
difabel citizenship.

Declaration relating to disposition of project thesis/dissertation

I hereby grant to the University of New South Wales or its agents a non-exclusive license to archive and to make available (including to members of
the public) my thesis or dissertation in whole or in part in the University libraries in all forms of media, now or here after known. I acknowledge that I
retain all intellectual property rights which subsist in my thesis or dissertation, such as copyright and patent rights, subject to applicable law. I also
retain the right to use all or part of this thesis or dissertation in future works (such as articles or books).

24th December 2019

…………………………………………………………… ……………………………………..……………… ……….……………………...…….…
Signature Witness Signature Date
The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction
for a period of up to 2 years must be made in writing. Requests for a longer period of restriction may be considered in exceptional circumstances and
require the approval of the Dean of Graduate Research.

FOR OFFICE USE ONLY Date of completion of requirements for Award:

2
ORIGINALITY STATEMENT

‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no
materials previously published or written by another person, or substantial proportions of material which
have been accepted for the award of any other degree or diploma at UNSW or any other educational
institution, except where due acknowledgement is made in the thesis. Any contribution made to the research
by others, with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also
declare that the intellectual content of this thesis is the product of my own work, except to the extent that
assistance from others in the project's design and conception or in style, presentation and linguistic
expression is acknowledged.’

Signed ……………………………………………..............

24th December 2019

Date ……………………………………………..............

3
COPYRIGHT STATEMENT

‘I hereby grant the University of New South Wales or its agents a non-exclusive licence
to archive and to make available (including to members of the public) my thesis or
dissertation in whole or part in the University libraries in all forms of media, now or here
after known. I acknowledge that I retain all intellectual property rights which subsist in
my thesis or dissertation, such as copyright and patent rights, subject to applicable law.
I also retain the right to use all or part of my thesis or dissertation in future works (such
as articles or books).’

‘For any substantial portions of copyright material used in this thesis, written permission
for use has been obtained, or the copyright material is removed from the final public
version of the thesis.’

Signed ……………………………………………...........................

24th December 2019

Date ……………………………………………..............................

AUTHENTICITY STATEMENT
‘I certify that the Library deposit digital copy is a direct equivalent of the final officially
approved version of my thesis.’

Signed ……………………………………………...........................

24th December of 2019

Date ……………………………………………..............................
INCLUSION OF PUBLICATIONS STATEMENT
UNSW is supportive of candidates publishing their research results during their candidature as
detailed in the UNSW Thesis Examination Procedure.

Publications can be used in their thesis in lieu of a Chapter if:

• The student contributed greater than 50% of the content in the publication and is the “primary
author”, ie. the student was responsible primarily for the planning, execution and preparation of
the work for publication
• The student has approval to include the publication in their thesis in lieu of a Chapter from their
supervisor and Postgraduate Coordinator.
• The publication is not subject to any obligations or contractual agreements with a third party that
would constrain its inclusion in the thesis

Please indicate whether this thesis contains published material or not

☒ This thesis contains no publications, either published or submitted for publication

☐ Some of the work described in this thesis has been published and it has been
documented in the relevant Chapters with acknowledgement

☐ This thesis has publications (either published or submitted for publication)

incorporated into it in lieu of a chapter and the details are presented below

CANDIDATE’S DECLARATION
I declare that:
• I have complied with the Thesis Examination Procedure
• where I have used a publication in lieu of a Chapter, the listed publication(s) below
meet(s) the requirements to be included in the thesis.

Name Signature Date

Antoni Tsaputra 24th December 2019

Postgraduate Coordinator’s Declaration

I declare that:
• the information below is accurate
• where listed publication(s) have been used in lieu of Chapter(s), their use complies
with the Thesis Examination Procedure
• the minimum requirements for the format of the thesis have been met.

PGC’s Name PGC’s Signature Date

4
 Abstract

This thesis contributes to an emergent body of literature in disability studies that

examines disability in the global South. Through investigating Disability Inclusive
Budgeting (DIB), this thesis contributes to understandings of disability inclusion in
government budgeting policies for development and its implementation in Indonesia as
a country of the global South.

The thesis investigates the potential of DIB for realising disability rights in Indonesia
post-ratification of the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD). The study uses multi qualitative methods including documentary
desk-based review of policy documents, semi-structured interviews with government
officials and disability activists, and focus groups with grassroots disabled people.

Three major findings are presented that contribute to the disability and development
literature. First, the thesis finds that DIB was developed by the Indonesian government
in response to international instruments such as the UNCRPD, and the Sustainable
Development Goals that require them to implement disability inclusive development,
and associated with the failure of welfare-focused approaches to achieve rights for
people with disability. Second, the thesis identifies the challenges that have contributed
to the slow progress of DIB implementation, described as paradigmatic and
implementation issues, and identifies factors that can improve its implementation.
Third, the thesis introduces the concept of difabel citizenship to capture the
expectations of disabled people in Indonesia in relation to inclusive development. Using
the framing of difabel citizenship, the thesis argues that DIB represents more than just
a disability mainstreaming policy, but rather has the potential to enable disabled people
to become active agents of development and therefore play a major role in realising the
rights of persons with disability in Indonesia.

Drawing on the concepts of disability rights, inclusion and participation, disability

citizenship, recognition and legitimacy, the thesis makes important interventions in
disability, development and citizenship studies, and has significant implications for

5
disability mainstreaming policy in development. Budget allocation through disability
budgeting is not enough for successful disability mainstreaming in development.
Disability mainstreaming policies must enable full participation of people with disability
and their difabel citizenship.

6
 Presentations

Tsaputra, A and T. Dibley. (2018) Changing laws, changing attitudes: The place of people
with disability in Indonesia. 14 September 2018. Invited presentation for the Indonesia
Update 2018, ANU Canberra, Australia.

Tsaputra, A. (2018) From Charity to Rights Based: Questioning the Paradigm Shift in
Indonesia’s Disability Policy. 3-5 July 2018. 22nd Biennial Conference of the Asia Studies
Association of Australia (ASAA), University of Sydney, Australia.

Tsaputra, A. (2018) Questioning the Paradigm Shift: Charity to rights based? 18 June
2018. SSEAC Postgraduate conference, University of Sydney, Australia.

Tsaputra, A. (2017) Exploring the Potential of Disability Inclusive Budgeting for Realising
the Rights of Persons with Disabilities in Indonesia. 19 October 2017. Indonesian
Students Association Scientific Conference (ISASC-2017), Osaka University, Japan.

Tsaputra, A. (2017) Enabling people with disability to participate actively in development

planning and budgeting processes in Indonesia. 13 September 2017. 3rd-placed speaker
and People's Choice Award in the UNSW 2017 Three Minute Thesis final, UNSW, Sydney,
Australia.

Tsaputra, A. (2017) Exploring the Potential of DIB for Realising the Rights of Persons with
Disabilities in Indonesia. 20 Juli 2017. The Grand Challenges Postgraduate Conference
2017, Faculty of Arts and Social Sciences, UNSW Sydney, Australia.

Tsaputra, A. (2017) Disability Rights Movements and Current Disability Policy Practices
in Indonesia. 13-14 March 2017. Invited presentation for the Australia Awards
Scholarship Enrichment Disability Workshop, Melbourne, Australia.

7
 Acknowledgements

First of all, I would like to thank Allah SWT the Almighty for enabling me to complete this
challenging and enlightening PhD journey. This achievement would not have been
possible without the opportunity and support granted to me by the Indonesian
Endowment Funds for Education of LPDP Scholarship to pursue a doctoral study at
UNSW Sydney Australia.

I have been fortunate to be guided and educated by two wonderful supervisors

throughout this PhD learning processes. Professor Leanne Dowse and Dr. Tanya
Jakimow, you have taught me so much invaluable knowledge to my scholarship and my
thinking, and you have given endless support and guidance to survive this journey. I am
so very grateful. I also thank my review panel members Richard Hugman and Gianfranco
Giuntoli for giving me guidance in my work as well as School of Social Sciences of FASS,
Disability Service Unit and the Graduate Research School of UNSW Sydney for providing
all support and reasonable accommodation to meet my special needs related to my
physical impairments.

To the informants of this study especially to my fellow disability activists and difabel
people, I thank you deeply and with the utmost respect for the opportunity to learn from
your insights and experiences. I can only hope that this study may somehow contribute
positively to your aspirations and endeavour in creating more inclusivity for people with
disability in Indonesia.

Thank you to the wonderful group of friends who have supported me through the
everyday life of this PhD. Eban Pollard, for being such an important support during the
last few months of my thesis completion, a true friend and brother. Cherry Zin Oo, for
being so patient with my requests for printing help from time to time and being a desk
mate to work until very late at night. Muhammed Ourang, for your support and hilarious
conversations that always refreshed a dull day and for your fabulous food during the
Ramadhan days. Isma, Jossina, Gabby, Shuju, and Jin for sharing stressful days and
beautiful moments together. And the many others who have shown an interest in my

8
research topic, had enlightening conversations with me or supported me with incisive
insights somewhere along the way: Karen Soldatic, Karen Fisher, Thushara Dibley,
Rosemary Kayess, Tom Shakespeare, to name just a few. I also thank my friend Robert
Horne for your enthusiastic assistance in copy editing this thesis.

And finally, my endless thanks to those closest to me:

My parents, Tasmaniar and Effendi, for your selfless and endless love, devotion and
great sacrifice in raising your son with a disability to be what he is now, and for priceless
life lessons about being always grateful in all situations and courageously facing all
challenges.

And Finally, to my beloved wife, Yuki Melani, thank you for your unwavering support,
love and patience in looking after me and for 24/7 companionship throughout this
journey. This achievement is for you my love.

9
 Table of Contents

Table of Contents
Abstract 5
Presentations 7
Acknowledgements 8
Table of contents 10
List of tables 14
List of figures 15
Glossary 16

CHAPTER ONE INTRODUCTION 20

1.1. Context and background 20
1.1.1. The status of people with disability in Indonesia 20
1.1.2. Approaches to disability and development in Indonesia 22
1.2. Thesis aims, research questions and significance 27
1.3. Structure of the thesis 29

CHAPTER TWO LITERATURE REVIEW AND CONCEPTUAL FRAMEWORK 34

2.1. Disability-budgeting in the global North and the global South 35
2.2. Disability mainstreaming beyond poverty? 40
2.3. Disability mainstreaming in development: Rights, participation and citizenship 43
2.4. Conceptual framework for the study 46
2.5. Conclusion 50

CHAPTER THREE DEFINING DISABILITY IN INDONESIA 52

3.1. An overview of disability terminology used in the thesis 52
a) Disability 52
b) People with disability and disabled people 53
c) Penyandang disabilitas 54
d) Difabel 55
3.2. Evolution of disability language in Indonesia 56
3.3. Emergence of Difabel 58
3.3.1. Criticism and positive impact of Difabel 60
3.4. Ratifying the United Nations Convention on the Rights of Persons with Disabilities –
debating terminology 61
3.5. Conclusion 62

10
CHAPTER FOUR METHODOLOGY 64
4.1. Positionality 65
4.2. Research design 69
4.2.1. Study design 69
4.2.2. Sampling frame 70
4.2.3. Recruitment and eligibility of participants 74
4.2.4. Informed consent 80
4.2.5. Accessibility supports 80
4.2.6. Recompensing participation 80
4.3. Data collection 81
4.3.1. Interviews 81
4.3.2. Focus group discussions 82
4.3.3. Participant observation 83
4.3.4. Research assistant 86
4.3.5. Ethics 86
4.4. Data analysis 87
4.4.1. Documentary data (policy analysis) 87
4.4.2. Empirical (fieldwork) data 90
4.5. Methodological limitations 95
4.6. Ensuring the credibility of data collection and analysis 98
4.6. Conclusion 99

CHAPTER FIVE DISABILITY INCLUSIVE BUDGETING IN INDONESIA:

EMERGENCE AND MECHANISMS 100
5.1. Tracing the development of DIB in Indonesia 101
5.1.1. Internal factors: The inadequacy of previous policies 104
5.1.2. External factors 107
5.2. Disability Inclusive Budgeting defined 116
5.3. How Disability Inclusive Budgeting operates 119
5.3.1. Disability Inclusive Analysis 121
5.3.2. Disability Budget Statement 123
5.4. Current Disability Inclusive Budgeting implementation mechanisms 124
5.4.1. Disability integrated National Action Plan of Human Rights (RANHAM) 126
5.4.2. Bottom-up development planning: Musrenbang 127
5.5. Conclusion 130

11
CHAPTER SIX ACHIEVING DIB IN INDONESIA:
PARADIGMATIC AND IMPLEMENTATION ISSUES 131
6.1. Paradigmatic issues: Welfare to rights? 132
6.1.1. Persisting deficiency model of disability 132
6.1.2. Deficiency model in disability inclusive development 136
6.2. Implementation issues 143
6.2.1. Limited resources 144
6.2.2. Misplaced leadership? 149
6.3. Conclusion 154

CHAPTER SEVEN DISABILITY INCLUSIVE BUDGETING AND CITIZENSHIP:

“IT’S OUR RIGHTS AND RESPONSIBILITIES TO CONTRIBUTE” 156
7.1. Disabled people’s voice on budget priorities 157
7.2. Disability Inclusive Budgeting to enable disability citizenship 167
7.2.1. Key principles: Inclusion and participation 169
a) A comprehensive disability inclusion 169
b) Meaningful participation: Beyond passive presence to influence 173
7.2.2. Disability Inclusive Budgeting and the importance of recognition and legitimacy 181
7.3. Conclusion 184

CHAPTER EIGHT LAYING THE GROUND WORK FOR INCLUSION:

A CASE STUDY ON THE DESA INKLUSI 186
8.1. Starting disability inclusive development from the Desa (villages) 186
8.2. The context of Desa Inklusi initiative 189
8.3. Outcome of the Desa Inklusi 193
8.4. Reflections on the Desa Inklusi initiative 197
8.4.1. Honouring legislative commitments 197
8.4.2. Disabled People’s Organisations and governments working together 198
8.4.3. Local Disabled People’s Organisation leadership 200
8.5. Conclusion 203

CHAPTER NINE DISCUSSION 205

9.1. Disability Inclusive Budgeting and a rights-based approach: Old idea, new home 206
9.2. Disability in development: Disjunctures between policy, practice and expectation 209
9.2.1. Paradigm shifts in question: Policy and practice 209
9.2.2. Policy intention and expectation 211
9.3. Inclusion in development: Difabel citizenship? 214

12
 9.3.1. Rights and obligations 215
8.3.2. Recognition and legitimacy 217
8.3.3. A unique disability citizenship 220
8.4. Conclusion 222

CHAPTER TEN CONCLUSION 224

10.1. Significance for disability, development and citizenship studies 225
10.2. Significance for practice 229
10.3. Limitations of the study 231
10.4. Implications for future research 231

References 233
Appendices 255
Appendix 1. Letters of support 255
Appendix 2. Recruitment materials 257
Appendix 3. Interview schedule 263
Appendix 4. Participant information sheet and consent forms 270

13
 List of Tables

Table 1 : The evolution of disability terminology in the Indonesian 56

government.
Table 2 : A sampling of documents and data extracted. 71
Table 3 : Semi-structured interviews with Yogyakarta provincial 77
government officials.
Table 4 : Semi-structured interviews with senior disability activists in 77
Yogyakarta.
Table 5 : Focus Groups with grassroots people with disability in Sleman 78
Yogyakarta Province.
Table 6 : Semi-structured interviews with national government officials 79
in Jakarta.
Table 7 : Semi-structured interviews with senior knowledgeable people 79
from National DPOs.
Table 8 : The events attended on invitations while conducting the 84
fieldwork in Yogyakarta.
Table 9 : Questions developed to analyse key documents 89
Table 10 : Indonesian disability related policy documents and their 101
relevance to DIB.
Table 11 : Disability rights in the Indonesian Law Number 8 of 2016 on 109
Persons with Disability and in the UN CRPD.
Table 12 : Disability in the SDGs 112

14
 List of Figures

Figure 1 : Initial conceptual mapping. 94

Figure 2 : Final conceptual mapping. 95
Figure 3 : Investing in ability framework. 121
Figure 4 : The area coverage of Desa Inklusi in Sleman regency and Kulon 191
Progo regency.
Figure 5 : A village disability activist raising awareness of village 192
government officials.
Figure 6 : Wheelchair ramps at a village hall built by disabled villagers and 195
funded by the Dana Desa.

15
 Glossary

Anak Berkebutuhan Khusus (Anak : Children with special needs (special needs
Luar Biasa) children).
Bappeda : Local Body for Planning and Development/ District
Planning Agency.
(Ber)cacat : with impairment(s).
BUMDes : The village owned enterprises.
CGOJ : Central government official in Jakarta.
CIQAL : Center for Improving Qualified Activity in Life- A
local DPO in Yogyakarta focusing on rehabilitation
and advocacy.
CSOs : Civil Society Organisations.
CRI : Combine Resource Institution.
DAJ : Disability activist in Jakarta.
DAY : Disability Activist in Yogyakarta
DBS : Disability Budget Statements.
Desa : Village
DIB : Disability Inclusive Budgeting.
DID : Disability Inclusive Development.
Difabel : An Indonesian adapted acronym for 'differently
able people' which was originally shortened as
'difable' and was then adapted into Indonesian
language as difabel.
DIHR : The Danish Institute of Human Rights.
DIPA : Central government ministry/agency budget
implementation check list.
DPOs : Disabled People's Organisations.
DPR : The House of Representatives.
GRB : Gender Responsive Budgeting
GPWD : Grassroots person with disability
Gotong royong : Working together for the people’s mutual benefit
Hak dan kewajiban : Rights and obligations

16
HWDI : Association of Indonesian Women with Disabilities
- A national DPO in Jakarta focusing on advocacy
and women with disabilities.
IDPWD : International Day of Persons with Disability.
INPRES : The Presidential Instruction.
Kelompok Difabel Desa (KDD) : Village DPOs.
Kelainan fisik, emosional, mental, : Physical, emotional, mental, intellectual, and/or
intelektual, dan/atau sosial social abnormalities
LGOY : Local government official in Yogyakarta.
Mendahulukan kewajiban dari : Putting ones’ obligations to the nation before their
kepentingan pribadi individual interests
MoSA : Ministry of Social Affairs.
MoNDP : Ministry of National Development Planning.
MoF : Ministry of Finance.
Musrenbang : Development planning consultation meeting- An
annual process during which residents meet
together to discuss the issues facing their
communities and decide upon priorities for short-
term development programs.
ODI : Overseas Development Institute.
OHANA : A local DPO in Yogyakarta focusing on research,
policy and advocacy.
Orang berkelainan : Impaired people
Orang tidak normal : Abnormal people
Orang-orang yang dalam keadaan : Persons who have physical or mental impairments
kekurangan jasmani atau
rokhaninya
Orang yang terganggu atau : Persons who are disturbed or have lost the ability
kehilangan kemampuan untuk to survive
mempertahankan hidupnya
OPDs : Local government work units.
Penderita Cacat : Persons suffering from defects.
Penyandang Masalah : People with problems of
Kesejahteraan Sosial /PMKS social welfare.

17
Penyandang Cacat : People with defects.
Penyandang Disabilitas : Persons with disability.
Penyandang Kelainan : People with abnormalities
PKH (Program Keluarga Harapan) : Family Hope Program - Social assistance with some
conditionalities to the poorest households which
have expecting or lactating mothers and children
between 0-15 years old.
Peraturan Desa : Village Regulation.
Peraturan Pemerintah : Government Regulation.
PNPM Peduli program : The National Self-Reliant Community
Empowerment Program - A national-wide scope
World Bank funded program which gains positive
impacts to lift up the people from poverty.
PPDI : Indonesian Association of Persons with Disability -
A national umbrella DPO in Jakarta focusing on
advocacy.
PWDs : Persons with disabilities.
RAN Disabilitas : National Disability Action Plan.
RANHAM : National Action Plan of Human Rights.
RENAKSI : Indonesian National Plan of Action for People with
Disability.
RGS : Royal Geographical Society.
RKA-KL : Central government Ministry/Agency Work Plans
and Budgets.
RKPD : The annual local government work plan and
budget.
RKT : The Annual Work Plan.
RPJMN : Government’s National Medium-Term
Development Plan.
SAPDA : A local DPO in Yogyakarta focusing on advocacy
and research on women and children with
disability.
SDGs : The Sustainable Development Goals

18
SIGAB : A local DPO in Yogyakarta focusing on diffability
inclusion and advocacy.
Sistem Informasi Desa (SID) : Village Information System
Surat Edaran : Circular Letter
Tuna : Javanese: loss, impairments; Bahasa: without,
missing, lacking such as in tunarungu (deaf)
persons with hearing impairment.
Undang-undang : Law(s)
UNCRPD : The United Nations Convention on the Rights of
Persons with Disabilities.

19
 CHAPTER ONE
INTRODUCTION

This thesis concerns the potential of Disability Inclusive Budgeting (DIB), as a possible
mechanism to realise disability inclusive development and disability rights in Indonesia.
It presents a multi-method applied policy study utilising qualitative design that seeks to
investigate and explore the potential of DIB as a government mechanism for realising
disability rights in Indonesia post-ratification of the United Nations Convention on the
Rights of Persons with Disabilities (UNCRPD). The first section of this chapter provides
context and background to the study. The second section presents the significance of
this study, and the aims and the research questions that drive this thesis. Finally, the
third section describes the structure of this thesis.

1.1. Context and background

This section provides the context and background important for this study. The general
situations that Indonesian people with disability face are discussed as a context that
describes disability issues in Indonesia.1 The shift in approaches to disability and
Indonesian development, or pembangunan, is also briefly discussed as a background for
the potential of DIB as a possible mechanism for disability mainstreaming in
development.

1.1.1. The status of people with disability in Indonesia

People with disability are one of the world’s most disadvantaged groups and make up
about 15 per cent of the global population (World Health Organisation 2011). The World
Report on Disability of 2011 estimates that 80 per cent of people with disability live in

1
Both terms ‘people with disability’ and ‘disabled people’ are used interchangeably in this thesis because
‘disability’ and ‘disabled’ here does not mean inability or impairments per se, but the disadvantage
experienced by people with disability. See p.54 for further explanation.

20
developing countries (World Health Organisation and World Bank 2011).2 Studies
demonstrate that Indonesia is likely to have slightly higher disability prevalence than
other countries in South East Asia (Irwanto et al. 2010, Kusumastuti et al. 2014). The
factors driving this difference include higher rates of natural disasters, violence, poor
traffic and occupational safety, prevalence of infectious diseases, poor knowledge of
healthcare, malnutrition resulting from poverty, and high rates of non-communicable
diseases (Kusumastuti et al. 2014). In addition, Indonesia is undergoing a demographic
shift in which the age of the population is increasing, suggesting higher rates of age-
related disability in future (Adioetomo et al. 2014). The lack of a reliable national
disaggregated disability data (Liu and Brown 2015), means it is likely that the official
statistical picture currently underestimates the real number of people with disability in
Indonesia. For example, the 2015 intercensal population survey reports that almost 9
percent of the population aged two and above have disability (Larasati et al. 2017).
However, the World Health Organisation (WHO) measure suggests that Indonesia has
up to 37 million citizens with disability or over 15 percent (Thohari 2013, Liu and Brown
2015).

Despite this hazy statistical picture on Indonesian disability prevalence, it has been
suggested that people with disability in Indonesia are some of the most vulnerable and
marginalised people in the community (Adioetomo et al. 2014, Kusumastuti et al. 2014).
In spite of improvements in economic development and the existence of legislation that
guarantees the rights of disabled people to participate in development, there has been
little significant change in the lives of the majority of people with disability in Indonesia
since the UNCRPD ratification in 2011 (Dibley and Tsaputra 2019). Most of these people
still depend on the charity of others and lack opportunities to participate in
development on the same basis as other citizens (Harahap and Bustanuddin 2015).
Accessibility has been identified as one of the main barriers to participation for people
with disability in Indonesia, where physical barriers play a significant role in
marginalising and excluding people with disability (Yeo and Moore 2003). For example,

2
Developed and Developing countries are contentious terms in development studies, but these are the
terms used in the 2011 World Report on Disability.

21
many disabled people cannot access public places such as mosques, shopping centres,
train and bus stations due to their inaccessible design (Thohari 2013).

In addition to the issue of accessibility, the discrimination and marginalisation faced by

disabled people in Indonesia remains a significant barrier to their participation, and
significantly relates to how disabled people are perceived by society (Purwanta 2012).
In some Indonesian cultures, there is a belief that having a disabled child can bring
disgrace to the family, particularly for children with intellectual disability and those with
mental illness (Kusumastuti et al. 2014). Having a child with a mental illness, for
example, is believed to be some form of karmic consequence of bad deeds that the
parents committed in the past (Kusumastuti et al. 2014).

Such stigmatising beliefs combined with undignifying labels attributed to people with
disability – such as penyandang cacat, meaning defective people, orang berkelainan,
meaning impaired people, or orang tidak normal, which means abnormal people –
continue to influence the ways that those in broader Indonesian society view and treat
disabled people (Harahap and Bustanuddin 2015). It is not surprising then that people
with disability in Indonesia are commonly viewed as unproductive members of society,
a view which leads to a neglect of their rights (Kusumastuti et al. 2014) and undermines
their capacity to contribute to national development (Harahap and Bustanuddin 2015).

1.1.2. Approaches to disability and development in Indonesia

The end of the thirty two-year dictatorial Suharto regime in 1998 marked an
unprecedented transition in Indonesia to a democratic political system. This change
encouraged civil society organisations to voice their concerns over issues of importance
to them. In this atmosphere Disabled People’s Organisations (DPOs) began challenging
stereotypical views towards disabled people and realising the rights of persons with
disability in all aspects of life (Thohari 2013). Disability activists from Central Java also
introduced the term difabel as a way of fighting stigmatising labelling against people
with disability (See Chapter Three for more discussion on disability terminology).

22
The ratification of the UNCRPD by the Indonesian government in 2011 serves as the
ultimate momentum for the dawn of a new framework in addressing disability in
Indonesia: a rights-based approach to disability. The key principles of the UNCRPD are
participation, inclusion, non-discrimination, equality of opportunity, empowerment,
transparency and accountability (Katsui and Kumpuvuori 2008, Worm 2012). These
principles are used by disability movements in many countries to push their
governments to adopt rights-based approaches to disability (McEwan and Butler 2007,
Degener 2016).

Following the UNCRPD ratification in 2011, Indonesian disability activists actively

encouraged national and local governments to implement this international convention
in their domestic programs and policies (Irwanto et al. 2010). Such activism is part of a
long Indonesian tradition where movement organisations have played a key role in
pushing the government to change their approach to disability from social welfare focus
to rights realisation. Disability activists also strongly demanded that government adopt
the 2030 Agenda with its Sustainable Development Goals (SDGs) and implement
Disability Inclusive Development (DID).

Empowerment predates more recent ideas of inclusive development and has long been
a part of the human development (Chambers 1994, World Bank 2000). The shift to a
discourse of empowerment happened in parallel with a move towards ‘inclusive
development’ in accordance with the dual meaning of this term. Empowerment is
inclusive in the sense that it empowers people to take part in a growing economy; and
in the sense that it promotes the participation of all people in setting development
agendas and implementing particular initiatives. The emergence of inclusive
development in Indonesia relates to this historical change in how the approach to
pembangunan shifted from guidance (pembinaan) to empowerment (pemberdayaan).
The New Order (Orde Baru), the reforms era (Era Reformasi) and the post-reforms era
(Era Pasca Reformasi) are significant settings in which this shift happened. This shift
captures both meanings of ‘inclusive’ in Indonesian development: 1. including people in
economic growth and opportunities, and 2. encouraging people as participant actors in
development.

23
Pembangunan in Indonesia was executed with the emphasis on economic development
during the New Order (Orde Baru) under the administration of former President
Soeharto (Ali 2004). This era was also called the Development Order, with Soeharto
identified as the Father of Development (Heryanto and Lutz 1988). The meaning of
pembangunan in this era was closely associated with the ideology of modernisation (Li
2007). During the New Order, pembangunan took the form of building modern physical
infrastructure and boosting economic growth through extraction of raw materials from
the natural environment (Li 2007). Pembangunan also included the mobilisation of
cheap and even free labour, although framed in positive terms such as mutual
cooperation (gotong-royong) or participation (Heryanto and Lutz 1988). Experts and
technocrats planned and determined the path and direction of pembangunan for
society, which was called pembinaan or guidance (Heryanto and Lutz 1988, Li 2007).
Disability was seen as a separate issue from this model of pembangunan. Disability was
a paternalistic welfare issue and people with disability had to live in institutions to be
rehabilitated and ‘normalised’ because they were considered by society as unproductive
as well as a social and economic burden (Purwanta 2012).

The end of the Suharto regime in 1998 saw tremendous change in Indonesian
government policies, identified with the Reformasi era. The Reformasi government
committed to total reforms in all areas, including a shift from top-down to a more
bottom-up approach in pembangunan through decentralisation policy, where people
were included in development. The implementation of decentralisation policy in
Indonesia started in 2001 and aimed to facilitate democratisation at the local level by
transferring power and financial resources to local governments (Sutiyo and Maharjan
2017). In decentralisation policy, development programs are to be executed by local
governments based on such principles as diversity, regional autonomy, community
participation and community empowerment (Sutiyo and Maharjan 2017). Thus,
decentralisation marked the shift in the approach to pembangunan in Indonesia from
guidance (pembinaan) to empowerment (pemberdayaan). Most prominent among
these empowerment development programs was the National Self-Reliant Community
Empowerment Program (PNPM Mandiri) which saw people in rural and urban areas

24
given entitlement to decide which development priorities were suitable to their needs.3
The PNPM program provided funding up to IDR 3 billion for each sub-district every year,
the use of which was determined by the people themselves (Tambunan 2012).

Decentralisation policy introduced in the Reformasi agenda targeted decentralisation of

development planning and budgeting in order to encourage people’s participation in
this process. The national government introduced participatory planning and budgeting
in local development. This was expected to enable greater participation of local
communities in development decision-making and to encourage the application of good
governance principles such as inclusion, accountability and the transparent distribution
of resources (Nurbudi 2008). However, the implementation of this community
participation in development planning has had varied success depending on ‘the actors,
local capacity, and social economic factors in the areas’ (Nurbudi 2008: 7).

Another reform in approach to development during the Reformasi era is diversity

mainstreaming, starting with a focus on gender and its key mechanism of Gender
Responsive Budgeting (GRB). ‘GRB is viewed as an important tool for gender
mainstreaming’ because it ‘provides analytical tools for the integration of a gender
perspective into government budgets (with an emphasis on public expenditure) to
allocate government resources in an equitable manner in order to address the different
needs of women and men, girls and boys in the society to achieve the goal of gender
equality’ (Fernandez 2015: 13). Gender mainstreaming was adopted by the Government
of Indonesia through a President Instruction No.9 of 2000 on gender mainstreaming in
national development (Susiana 2015).

In the post-reformasi era that started from 2014 onwards (Komara 2015), Indonesian
pembangunan, conforming with the global commitment to achieving the 2030 Agenda
for Sustainable Development, now focuses on achieving implementation of the
Sustainable Development Goals (SDGs) at both national and local levels, with inclusion
and participation as the main principles (Bahuet and Ansye 2018). There is a close
relationship between SDGs and the rights-based approach to development. A rights-

3
PNPM Mandiri is the policy and operational umbrella for all community empowerment programmes in
the country that includes PNPM Peduli, PNPM rural, PNPM urban, PNPM Generasi and PNPM Green.

25
based approach to development is an approach that ‘sets the achievement of human
rights as an objective of development’ and ‘uses thinking about human rights as the
scaffolding of development policy’ (ODI 1999: 1). A rights-based approach to
development also requires that core human rights principles (which include equality and
non-discrimination, participation and empowerment, and transparency and
accountability) need to be applied to all development processes (Worm 2012). Human
rights guide the implementation of the 2030 Agenda, and the SDGs contribute to the
realisation of human rights by promising to leave no one behind, including people with
disability (Winkler and Williams 2017, DIHR 2018).

In the same spirit as the SDGs, the human rights-based approach to development aims
to create opportunities for inclusion and participation of all those whom it claims to
help: the poorest, the most marginalised, minorities and other disadvantaged groups
including people with disability (Uvin 2007). In relation to disability, the human rights-
based approach aims to shift the emphasis away from only specialised programs and
towards disability mainstreaming into all development programs (Stubbs 2009, Degener
2016). This disability mainstreaming (learning from the connection of gender
mainstreaming and GRB) is also the aim that DIB is intended to achieve, and hence DIB
as a potential government mechanism for disability rights realisation is assumed to be
underpinned by the rights-based approach to disability in development (MoNDP 2015).

As a result of those international trends and in tandem with other factors, the
Indonesian government introduced a set of guidelines for Disability Inclusive Budgeting
(DIB) in 2015 as one of the efforts to implement the UNCRPD and to achieve DID by
mainstreaming disability into all development programs and policies. Given that DIB is a
new approach by the Indonesian government and their first attempt to implement a
policy alligned with the rights-based approach to disability in development, potentially
important questions are raised as to the challenges and opportunities arising from such
a shift and regarding policy and practice within Indonesian contexts and beyond.

26
1.2. Thesis aims, research questions and significance

This study investigates the current Indonesian government mechanisms of DIB

implementation and explores the potential of the current implementation mechanisms
of DIB from the perspective of Indonesian disabled people and the Indonesian
government. The needs and priorities of Indonesian disabled people will be considered,
as well as the expectation of Indonesian disabled people for their own role in DIB
implementation processes. Therefore, the aim of this study is to examine the potential
of DIB for realising the rights of people with disability in Indonesia. This aim is achieved
through several objectives that include exploring the main conditions that have allowed
for DIB’s emergence and the extent to which DIB currently occurs in Indonesia,
identifying the underlying challenges and opportunities in achieving DIB, and identifying
the meaning of this policy to Indonesian people with disability and their expectations of
this policy.

To address the aim and its objectives, this thesis sets out to answer the following three
questions:
1. What were the conditions that allowed for the emergence of DIB at this time in
Indonesia, and how has its implementation progressed?
2. What are the challenges and opportunities in achieving DIB in Indonesia, and what
contributes to these?
3. What does DIB mean to people with disability and what do they expect this policy to
achieve?

The significance of answering these research questions is both practical and scholarly.
For practical significance, the research findings of this thesis may further understandings
of what is required of government policies aimed at mainstreaming disability into
development. The conditions that have driven DIB’s emergence in Indonesia as well the
challenges and opportunities available to achieving the implementation of this possible
mechanism may also inform similar programs in other countries. As an applied policy
study, this thesis will provide insights from the voices of disabled people for government
agencies in Indonesia and beyond that can enhance the inclusion and participation of
people with disability in development programs. For disability activists, the insights from

27
this thesis may inform them about government and policy related issues that will be
important for their advocacy work.

The main scholarly significance of this thesis lies in its contribution to emerging disability
studies in the global South. Global North/South are contested concepts. These terms are
broadly used to refer to the socio-economic and political divide between richer and
poorer nations (Kwarteng and Botchway 2018). However, this view has recently been
considered simplistic by some development scholars because many poorer countries
have experienced significant economic and social development, and therefore global
North/South should refer to richer or poorer communities which can be found both
within and between countries (RGS 2013). The use of global North/South terms in this
thesis alligns with Critical Disability Studies that use these as the metaphors ‘which are
more political and theoretical than geographic’ (Biyanwila and Soldatic 2016: 408). In
Critical Disability Studies, the global North is a shorthand used to refer to colonising
imperial powers (Meekosha 2011), and the global South refers to the majority of the
world population in poorer economies which were historically conquered or controlled
by modern imperial powers and are often associated with poverty, economic
exploitation and dependence (Meekosha 2011, Biyanwila and Soldatic 2016). Indonesia,
on which this thesis is focused, is part of the global South in this sense, and one of the
homes to 80 per cent of people living with disability in developing countries (WHO
2011).

‘While the global North and South categories are differentiated and stratified realities,
the dominance of the global North, in particular western modernity, is driven by the
objectives of capitalism and colonialism, which marginalise and ignore an array of
conceptions and theories within the South’ (Biyanwila and Soldatic 2016: 409). Disability
studies emerged from the global North and have been exported to the global South
without reference to the thoughts of disability theorists from and different contexts in
the global South (Meekosha 2008). ‘The dominance of the global North in the
universalising and totalising tendencies of writings about disability has resulted in the
marginalisation of these experiences in the global South’ (Meekosha 2011: 667). These
reflections suggest the importance of studies such as this thesis that voice the
experiences of people with disability in the global South.

28
In relation to the topic of this thesis, studies from or about disability in the global South
offer different ways of thinking about disability-budgeting to those in the global North.
Indonesia is one of the first governments in the global South to introduce DIB on a
national scale as a possible implementation mechanism of the UNCRPD, of which the
2015 budgeting and planning guidelines from the Bappenas (Ministry of National
Development Planning) are to date its most tangible tool. Studying this unprecedented
initiative provides a timely opportunity to contribute to our understanding of post-CRPD
government policy responses to a rights-based approach to disability in development
across the global South. There is now a need for research that examines the specific
policy mechanisms that governments in the South employ to implement disability
budgeting, as well as the interaction of policy and advocacy and the issues that emerge
between them. This thesis offers critical perspectives on disability mainstreaming to gain
a deeper understanding of the voices of people with disability from the global South
about their inclusion in development.

1.3. Structure of the thesis

The forthcoming chapters are structured to answer the research questions and build an
argument about the potential of DIB for realising the rights of persons with disability in
Indonesia. The frameworks and the findings of this study are presented in the following
nine chapters.

This introductory Chapter One begins by providing important context and background
to this study. This context describes the situations of people with disability in Indonesia,
the emerging rights-based approach to disability and some shifting approaches to
development in Indonesia that provide a background to the emergence of DIB. The aims
and research questions, as well as the practical and scholarly significance of this thesis,
are also explained in this chapter.

Chapter Two reviews the relevant literature about disability budgeting in disability
studies, as well as relevant literature from development and citizenship studies. This
chapter draws together theories about disability-budgeting in both the global North and

29
global South contexts, a rights-based approach to disability, and disability inclusion in
development. Chapter Two also identifies gaps where the study can contribute to the
continuing development of ideas in disability inclusive budgeting as an interdisciplinary
topic. Significantly, there are very few studies in the global South that explore disability
budgeting. Those that do exist explore the philosophical framework for disability
budgeting in the global South as a type of identity budgeting. This thesis picks up on
these more theoretical explorations and applies them to investigate a specific disability-
budgeting approach as a government-initiated policy mechanism in the Indonesian
context, a country in the global South. Studying the Indonesian experience of
implementing a rights-based approach to disability through DIB has the potential to
reveal implications for such policies across the global South. This would also mean
bringing voices from the global South into a global Northern-centric study of disability
budgeting.

Chapter Three presents international and Indonesian contexts about disability concepts,
language and terminology. This chapter also sets out the disability terminologies used
in the thesis, and how and why they are used. The reader is provided with an overview
of the emergence of disability labels in Indonesia, and will gain insights into their
contemporary usage and the contestation that continues to inform disability advocacy,
activism and politics.

Chapter Four describes the study and provides an overview of the methodological
framework. The chapter begins with a presentation of the researcher’s multiple
positionings as embedded in his lived experience as a person with disability, his
Indonesian citizenship, activism in the Indonesian disability rights movement and his
status as a government official in Indonesia. The chapter then goes on to outline the
research design, including the sampling frame, the recruitment and eligibility of
participants, consent and accessibility support and compensation for participants.
Finally, the chapter describes the methods used in data collection and data analysis in
which standard ethical procedures were followed, as well as its credibility and
methodological limitations.

30
Chapter Five presents findings from a documentary analysis of key policy documents
relating to disability and development in Indonesia between 2004 and 2017. This
chapter examines the conditions that prompted the Government of Indonesia to
develop the DIB as a disability mainstreaming mechanism, and goes on to critically
examine the ways DIB is defined, how it is to operate in the Indonesian context based
on its available set of guidelines and the mechanisms currently in place for its
implementation. It also examines the capacity of the implementation mechanisms
within DIB to achieve its intended outcomes. This chapter demonstrates that DIB is a
positive significant step taken by the Indonesian government towards mainstreaming
disability rights across its development policies and programs. In developing DIB, the
Indonesian government has responded to both internal factors related to previous
disability policies, and external factors arising from international trends on disability
rights and inclusive development. These external factors in particular have situated DIB
as an important part of the so-called paradigm-shift from a social welfare focus to a
rights-based approach in promoting the rights of people with disability in Indonesia. This
chapter also identifies some of the current implementation challenges that hamper DIB
from achieving its full potential to mainstream disability in development, as well as to
operationalise the inclusion and active involvement of persons with disability in its
entire implementation processes.

Chapters Six, Seven and Eight present an analysis of the empirical findings of the study.
Chapter Six explores the challenges in achieving DIB in Indonesia, identified in Chapter
Five, drawing on the perspectives of government officials, disability activists, and people
with disability. It discusses how a range of paradigmatic and implementation issues
associated with the government’s approach to disability have become significant
barriers to progressing DIB. The issues identified in this chapter suggest the lack of a
comprehensive paradigm shift from social welfare to a human rights approach to
disability and the lack of reliable mechanisms to ensure DIB implementation as a shared
responsibility. This chapter finds that changing terminology and one possible
mechanism such as DIB is inadequate to realise disability rights and inclusion without a
comprehensive paradigm shift to a rights-based approach to disability and without

31
practical mechanisms and strategies to realise them in thinking and practice. Exploration
of these issues also raises questions on how to address them.

Chapter Seven explores the aspirations of people with disability who contributed to this
study, commenting on possible ways to address the issues that have slowed DIB’s
progress and to ensure how DIB can achieve its full potential through listening to the
voices of people with disability. This chapter begins with an exploration of disabled
people’s expectations for DIB budget allocation to address identified priority areas. The
chapter then explores the expectations people with disability have about disability
inclusion in development through DIB. It suggests that people with disability have much
more expansive understandings of the main aspects of DIB (such as priorities, inclusion
and participation) than government officials and policy guidelines. This chapter also
discloses the high expectations of people with disability for DIB to be a mechanism that
may also deliver on their broader goals of recognition and legitimacy of their disability
citizenship to become active agents in State-led development.

Chapter Eight takes up the aspirations of people with disability presented in Chapter
Seven, as well as the challenges to implementing DIB presented in Chapter Six. It
presents a case study of Desa Inklusi (Inclusive Village) in Yogyakarta, drawing this out
as a good practice example of how the principles of DIB and the expectations of people
with disability can be realised. In particular, Desa Inklusi demonstrates key factors that
can support participation of disabled people in development and presents this localised
good practice as a model for a nation-wide approach to DIB implementation.

Chapter Nine synthesises the insights emerging from the findings chapters and provides
a broad discussion of the study’s findings and how they further answer the aims and
research questions. This chapter provides a number of key insights in relation to DIB’s
emergence and implementation challenges, as well as the demands of people with
disability for this mechanism. The challenges in DIB’s implementation are synthesised as
limited implementation of a rights-based approach to disability through domesticating
international human rights legislations, and a disjuncture between policy and practice.
The expectations of disabled people for DIB are interpreted and conceptualised as a

32
unique form of Indonesian disability citizenship, Difabel Citizenship, that highlights the
importance of the concepts of rights, obligations, recognition, and legitimacy.

Chapter Ten outlines the contributions of this thesis to relevant debates in disability,
development and citizenship literature and to emerging studies on disability budgeting
in the global South. This chapter also highlights how the insights that this thesis has
generated can contribute to practice, and finally assesses the study limitations and
broader questions arising from this thesis that future research needs to address.

33
 CHAPTER TWO
LITERATURE REVIEW AND CONCEPTUAL FRAMEWORK

Chapter One has outlined that this thesis investigates the potential of DIB for realising
the rights of people with disability post-ratification of the United Nations Convention on
the Rights of Persons with Disabilities (UNCRPD) in Indonesia. DIB is a possible
mechanism to mainstream disability into development through development planning
and budgeting processes. This mechanism is intended to implement the mandates
required by the UNCRPD and the SDGs that the Indonesian government ratified and
adopted in 2011 and 2015 respectively. This thesis examines the extent to which this
mechanism has been implemented from the perspective of, 1. government officials as
the policy implementer, 2. disability activists and 3. people with disability.

In doing so, this thesis contributes to several areas of scholarly significance or debates.
The first area concerns the debates about the limitations of policies developed in the
global North to be applied in the global South (see Chapter One on the use of global
North/South terms in this thesis). Alongside this is a need for research that examines
how such policies are applied in practice, their limitations and possibilities. Second, this
thesis makes its contribution to the debates about the need for disability mainstreaming
to go beyond the aims of poverty reduction, to address the broader more encompassing
aims of ‘development’. There is, therefore, a need to interrogate what ‘development’
means in relation to disability in particular contexts, and as voiced by people with
disability. Third, this thesis contributes to interdisciplinary debates about the
importance of understanding the intersection between citizenship, rights and
participation to the achievement of development. However, these concepts are also
contextually specific and so require research as to their localised meanings and
expressions.

The first section of this chapter examines the different considerations required when
examining disability budgeting in the global South, compared to its dominant
understandings as developed and applied in the global North. This section argues that
global Southern disability budgeting indicates the importance of disability

34
mainstreaming, rights frameworks and inclusion for disability rights realisation. There is
a need to examine what disability-budgeting, underpinned by the disability rights
framework in the global South looks like. The second section reviews the literature from
both the global North and South to understand the concept of disability mainstreaming
in development that DIB aims to achieve. This section argues that the literature has
highlighted the significance of disability mainstreaming beyond poverty reduction.
However, there is insufficient literature that actually maps out what this particular focus
should look like in the global South and what policy is best to achieve it. The third section
reviews theories from the literature on the intersection between rights, participation
and citizenship in disability mainstreaming in development. The section argues that
research is needed to examine what this intersection means to people with disability.
The final section presents the conceptual framework and explains the main concepts
utilised in the present study drawn from the literature reviewed in the previous sections.

2.1. Disability-budgeting in the global North and the global South

Disability-budgeting research emerged in the 1990s, originating from the global North
and relevant to people with disability there. The research on disability and budgeting
from this perspective has traditionally revolved around the costs of living with a
disability (Berthoud 1991, Smith et al. 2004, Hinton 2006, Wilkinson-Meyers et al. 2010)
and personal or individual budgeting in determining and utilising services, resources and
independent living (Laragy 2002, Spandler 2004, Leece and Leece 2006, Barnes 2007,
Glendinning et al. 2008, Manthorpe et al. 2009, Fisher et al. 2010, Eriksson 2014, Fleming
et al. 2014).

These studies are largely based on the circumstances and experiences of people with
disability in the global North, and so their relevance and applicability to the global South
has increasingly been questioned. One of these areas of incompatibility is with the
emphasis on individualised funding or direct payment mechanisms to meet individual
needs of disabled people (Leece and Leece 2006, Hinton 2006). Direct payment policies

35
are seen to enable independence and control as well as to improve the quality of
services because people with disability are given freedom to determine what kind of
support they actually need and how it should be delivered (Hinton 2006). Fisher et al.
(2010) further explain individualised funding as a system of organising consumer -
directed care originating in parts of North America and Western Europe. This system has
different names in different countries where, for example, it is called ‘direct payments’
in the UK, referred to as ‘cash for care’ in some other European countries, as ‘self-
determination’ in the USA and as ‘self-managed care’ in Canada (Fisher et al. 2010).

A second limitation is that this individualised funding for disabled people in the global
North focuses on meeting the various intrinsic needs of people with disability rather
than addressing the extrinsic ones. Smith et al. (2004) investigated the additional needs
and costs of disability from the perspective of people with disability themselves in the
UK, identifying that such expenses are both intrinsic and extrinsic in nature. Extrinsic
needs, or those that are not related to personal specific needs, require environmental
change such as public infrastructure which in turn generates additional costs so that
people with disability can participate in recreational, cultural and educational pursuits.
These include the provision of access to public buildings, facilities, transport and
interpreter services throughout public and commercial settings. These needs are those
which can be met through changes in the public realm. Intrinsic needs, on the other
hand, relate to the personal needs of people with disability such as additional costs for
fuel (needed for longer use of a heater to control body temperature), for personal care
or for equipment to help them lead an independent life such as a power wheelchair
(Smith et al. 2004).

Berthoud (1991) argues that people with disability have to spend more money on their
needs to maintain the same standard of living as those without disability. The additional
costs of living with a disability have been calculated to be proportionately greater for
those with lower earnings which consume most of their disposable income (Hinton
2006). It can be said that finance rules the lives of people with disability, dictating their
daily activities and leading to poverty due to extra expenses, the presence of
impairments, and social as well as economic exclusions. As Hinton suggests, 'you have
to be rich to afford to be disabled' (Hinton 2006:107). It is irrefutable that people with

36
disability face additional costs for things that are taken for granted by people without
disability such as transport, mobility and medical treatment (Hinton 2006). Berthoud
(1991) also explains that personal preferences and the social and economic framework
within which disabled people live affect what they need. These additional costs of living
with disability and economic exclusions and varied specific needs of people with
disability suggest the importance of individualised funding to enable disabled people to
live their life like other people.

These two characteristics of disability policy in the global North—individualised funding

and a focus on intrinsic rather than extrinsic needs—may not be suitable in the global
South that ‘represents the majority of the world population in poorer economies’
(Biyanwila and Soldatic 2016: 409). The key reasons for this, among others, are because
the infrastructure and public facilities in the global South are generally poorer and so
extrinsic collective needs may be more significant to address in order to ensure disabled
people’s access to such basic human rights as education, health, and employment. In
short, the large body of literature that examines disability policies in the global North
has limited relevance to the global South.

The limitations in the literature raise the question as to what kinds of disability
budgeting mechanisms are appropriate for the global South. There is a nascent, yet
growing literature that has started to address this question. For example, Biyanwila and
Soldatic (2016) reported preliminary research on identity participatory budgeting
advanced by civil movements of the global South that has become a significant feature
of global development policy and practice. This study by Biyanwila and Soldatic (2016)
raised very important insights about how disability budgeting in the global South was
different from that of the global North. While individualised disability budgeting in the
global North draws on personalisation and self-directed support discourses, disability
budgeting in the global South seeks to promote collective realisation of disability rights
through collective and institutional practices of macroeconomic budgeting for disability
(Biyanwila and Soldatic 2016). Such rights realisation through a budgeting process is
more than just the right to personal choice in purchasing and using a disability service,
but it calls for disabled people’s participation ‘in democratic governance by enforcing
disability inclusive financial allocations across the public sphere’ (Biyanwila and Soldatic

37
2016: 417). In the same vein, a second study that documents a report on the
implementation of the UNCRPD in the Philippines also provides a significant insight
about disability budgeting in the global South (Purcil 2016). This study in the Philippines
demonstrates that the rights framework of this international treaty has helped to enable
disability activists in the global South to demand disability mainstreaming with active
involvement of disabled people in macroeconomic budgetary allocations to fulfil
disability rights (Purcil 2016). Thus, disability budgeting in the global South is not only
about resource allocation, but also about disability rights realisation through disability
mainstreaming in all aspects of development and disabled people’s active involvement
in influencing the government budgeting policy. Both of these studies point to the
importance of disability mainstreaming, rights framework and inclusion for disability
rights realisation through disability budgeting in the global South.

The problem remains, however, that the conceptual framework of disability inclusion
and disability rights is derived from the norms and values of the global North. Some
scholars argued that domestic implementation of such global North concepts through
ratification of international human rights treaty such as the UNCRPD in the global South
has been challenging (Lord and Stein 2013, Schiemer 2017).

Similarly, scholars have pointed to how the concept of disability rights and models of
disability embedded in the UNCRPD is driven by a Northern discourse that is not
necessarily applicable to the contexts in the global South (Shakespeare 2006, Meekosha
2011). Some authors have raised their concerns about the entrenchment of this British
social model of disability in the UNCRPD. McEwan and Butler (2007) question whether
the social model that has been formulated in global North industrialised countries is
appropriate in the global South, as a social model entails an understanding that disability
is created by society and environment and therefore restrictive environments need to
be modified to be accessible (Retief and Letšosa 2018). The idea of a barrier free
environment promoted in the global North as a means of achieving independence for
disabled people is not compatible, for example, with Indonesian collectivist values and
a feudal status system that does not encourage independence (Komardjaja 2001).
Extreme resource constraints with many competing priorities may also make equity

38
difficult to achieve in the global South. Such contextual differences therefore require
care to be taken when implementing ‘global’ policies such as the UNCRPD.

Further, the focus on individual rights assumed that the ‘individual’ is primary, whereas
collective structures such as family and community dominate the global South (Schiemer
2017). The individual rights enshrined in the UNCRPD ‘reflect the dynamics of an
industrialised society’ whereas ‘many countries in the global South are predominantly
based on agriculture and subsistence farming, which reflects more traditional
community structures’ (Meekosha and Soldatic 2011: 1388). In addition to the
challenges identified in translating the disability rights concept in the UNCRPD to the
various different contexts in the global South, one question remains open: ‘how a
convention that is not mainly based on the norms and beliefs of the global South can be
implemented in countries of the majority world’ (Schiemer 2017: 182).

Beyond conceptual issues are practical ones, such as whether countries in the global
South have the capacity to implement what is required from the ratified international
treaties. The most common challenges in implementation of the UNCRPD in the global
South include limited disability expertise and implementation capacity at the
government and civil society level (Lord and Stein 2013). In the same vein, Lang et al.
(2011) deduce that it is possible for countries which have ratified the UNCRPD, and have
the most progressive disability rights legal framework and policies, may fail in their
implementation of the UNCRPD. The failure is simply because they do not have an
effective administrative infrastructure to implement it. Governments that have ratified
the UNCRPD have pursued inconsistent and unstable policies to implement it, due partly
to limited resources, changes to the political agenda of the global North, as well as
conflicts, widespread poverty and increasing natural hazards in some countries in the
Middle East, Africa and Asia (GAN 2018). These limitations point to the need for policies
that are compatible with the resource and technical environments in the countries of
the global South and investigations on what contributes to these limitations and
opportunities exist to address them.

To conclude, the majority of the literature on disability budgeting has emerged from,
and in relation to, the global North. Such literature may not be relevant to the global

39
South, due to different circumstances and socio-economic and cultural contexts. A few
studies that preliminarily looked at disability-budgeting in the global South offer
different ways of thinking about disability-budgeting to those in the global North (Hans
et al. 2008, Biyanwila and Soldatic 2016,Purcil 2016). This insight highlights a need for
investigations as to how a disability budgeting underpinned by the concepts of disability
rights and inclusion in the global South can be put into practice and what mechanisms
are used to implement it. There is also a need for research that examines in more detail
the limitations of ‘global’ policies such as the UNCRPD in the global South, as well as the
possibilities for other budgeting mechanisms

2.2. Disability mainstreaming beyond poverty?

Developing policy from the perspective of the global South necessarily entails examining
the relationship between disability and poverty, and beyond that to ‘development’.
Previous literature, as highlighted in the earlier section, suggests that the emergent
disability-budgeting in the global South is not only about resources allocation but more
importantly it is about disability mainstreaming in development. Disability and poverty
is the common connection made in the relationship between disability and
development.4 Such connection entails that disability mainstreaming in development
particularly in the global South poorer economies needs to concentrate on poverty
reduction programs (UN DESA 2015, Karr et al. 2016). This section outlines debates in
the literature about why disability mainstreaming needs to go beyond poverty
reduction. Questions arise, however, as to the extent that limiting disability budgeting
to poverty reduction misses mainstreaming disability into more encompassing
understandings of ‘development’.

Poverty remains, of course, a critical issue for people with disability in the global South.
The estimate that 82 per cent of people with disability living in the Global South are in
poverty, and that one fifth of the world’s poorest people are persons with disability, as

4
Poverty in this context refers to the multi-dimensional understanding of poverty which is common
in human development and as understood in the 2030 Agenda.

40
well as the assumption of a mutually reinforcing disability and poverty relationship, has
strengthened the connection between disability and development (Eide and Ingstad
2011, Goodley and Lawthom 2013). The first World Report on Disability launched in
2011 by the World Health Organisation (WHO) also acknowledges the relationship
between disability and development, emphasising that disability is a development issue
due to the two-way link between disability and poverty and therefore ‘disability should
be a part of all development strategies and action plans’ (Grech 2016:4).

Furthermore, disability and poverty are connected in a vicious cycle (Yeo and Moore
2003, Eide and Ingstad 2011). When disabled people are faced with multiple barriers to
enjoy their basic human rights to education and employment, for example, disability
creates or contributes to poverty. In the same way, lack of nutrition during pregnancy
or lack of money to access good health services and buy medicines increases the risk of
people becoming disabled (Eide and Ingstad 2011). Therefore, people with disability,
particularly those living in poor countries of the global South, are more vulnerable to
experience poverty (Karr et al. 2016). Because of the relationship between disability and
poverty, the integration of disability into development agendas is important to reduce
poverty as well as to achieve social inclusion and equitable development (UN DESA
2015). At the same time, attempts to prevent disability in the global South poorer
economies need to ‘deal with underlying poverty and its associated risks’ (McEwan and
Butler 2007: 452). Some donors, development agencies and organisations in the global
North such as the World Bank, USAID and the UK Department for International
Development make frequent references to disability in their documents and policies for
poverty reduction backed by international human rights instrument such as the
UNCRPD. They suggest the need for inclusive development ‘by providing a
comprehensive framework for governments’ to implement disability mainstreaming in
development (Grech 2016:5).

However, there has been increasing support for the idea that disability needs to be
mainstreamed in the broader development agenda particularly beyond the increasing
focus on poverty and its reduction (Grech 2009). While poverty is frequently made as a
basis for the inclusion of disability in development, the barriers to basic human needs
that disabled people living in poverty in the global South confront – such as the lack of

41
food, reliable health services, sanitation, inadequate infrastructure, and remoteness –
may be irrelevant to the disability debates in the global North (Grech 2009). To tackle
these issues requires commitment to the idea that disability mainstreaming in
development goes beyond focusing on poverty reduction efforts, because the issues
that people with disability face cut across sectors and require cross sector responses
(Stein and Stein 2014). For example, taking a slightly different view, Metts (2004) sees
the relationship between disability and development from both humanitarian (rights
based) and economic perspectives. The economic perspective embodies the view that
disability is a development issue beyond narrow focus on poverty reduction through the
government social protection programs. The expectation is that global commitment to
equalising social and economic opportunities for people with disability can increase their
human capital and enable them to reduce their dependence on cash transfers and other
forms of public support (Metts 2004).

Furthermore, the mainstreaming of disability rights beyond programs to address

poverty will not only benefit people with disability but also the entire community. For
example, the implementation of universal design principles such as installing ramps at
public places benefits not only people with disability but can also help elderly people to
avoid stairs and facilitate the movement of goods (Stein and Stein 2014). Such indirect
benefits can help to make a case for increased expenditure, even within limited budgets.

Further benefits go beyond the material to the fulfilment of civil and political rights of
people with disability. In another example of the importance of mainstreaming beyond
poverty reduction, a study from Uganda shows that a developing country can benefit
from disability rights mainstreaming into government policies, particularly in terms of
access to administrative and political representations in the government (Katsui and
Kumpuvuori 2008). The authors point out that Uganda has been successful in applying
the human rights-based approach in the civil and political rights of persons with
disability. Ugandan politics has representation of people with disability at all levels
including in the parliament, along with 47,000 councillors with disability working in the
local government structure of which half are women (Katsui and Kumpuvuori 2008). This
insight suggests that disability mainstreaming needs to address all sectors including

42
politics because disability is a multi-sector issue, and focusing only on poverty reduction
will strengthen the status quo of disability in development as a welfare issue.

While the importance of mainstreaming disability rights beyond poverty and across all
sectors is emphasised in several studies, few investigate a specific mechanism to achieve
these aims (Miller and Albert 2005, Katsui 2008, Huq et al. 2013, Edwards 2014). Miller
and Albert (2005) analysed the strengths and weaknesses of gender mainstreaming to
inspire actions towards better inclusion of disability rights into development policies and
practices. This study points out that, in spite of several proposals and policy papers that
discuss mainstreaming disability in development, none describe precisely what needs to
be done to mainstream disability rights in all sectors in practice (Miller and Albert 2005).
Similarly, through an investigation of disability mainstreaming in Japan and Finland,
Katsui (2008) argues that there has been no concrete action in practice even with the
growing awareness of the needs of disability rights mainstreaming in development.
While many governments or program implementers recognise the importance of
disability rights mainstreaming in development, they have no mechanism at their
disposal to put it into practice (Huq et al. 2013)

To sum up, the need for disability mainstreaming beyond poverty reduction and as part
of more encompassing development agendas is hence established in the literature.
What is still lacking, however, is a clear sense of what such mainstreaming would look
like, or what possible forms it could take given the particular circumstances common
across the global South. Furthermore, the need to incorporate disability into
‘development’ requires an understanding of what this polyvalent concept means,
particularly to the people who are the targets of these programs.

2.3. Disability mainstreaming in development: Rights, participation and

citizenship

The literature has suggested that ‘development’ entails not only poverty reduction, but
needs to be achieved in reference to rights, participation and citizenship. In the
literature these concepts are often treated as being universal. However, as this thesis

43
demonstrates, the meanings associated with such concepts are often particular to
certain populations and in different socio-cultural contexts. This section examines how
these concepts have been operationalised in existing disability and development
literature.

The adoption of the UNCRPD has played an important role in promoting discussion
about human rights and citizenship rights for people with disability (Sépulchre 2017,
Hilberink and Cardol 2019). As a civil rights international treaty, the UNCRPD is actually
establishing citizenship for people with disability with its eight guiding principles that
together reflect the scope of citizenship (Hilberink and Cardol 2019). The guiding
principles include: ‘(1) Respect for inherent dignity, individual autonomy including the
freedom to make one’s own choices, and independence of persons; (2) Non-
discrimination; (3) Full and effective participation and inclusion in society; (4) Respect
for difference and acceptance of persons with disabilities as part of human diversity and
humanity; (5) Equality of opportunity; (6) Accessibility; (7) Equality between men and
women; and (8) Respect for the evolving capacities of children with disabilities and
respect for the right of children with disabilities to preserve their identities’ (Hilberink
and Cardol 2019: 1). These guiding principles of the UNCRPD position disability as a
human rights issue and at the same time a crucial focus of global development measures
(Karr et al. 2016). The UNCRPD, which entered into force in 2008, has marked the need
for a paradigm shift in perspectives towards people with disability as rights holders and
active members of society rather than objects of charity (Mji et al. 2009, Adioetomo et
al. 2014). Participating in development as active members of society is seen to be critical
to the achievement of citizenship.

Hickey and Mohan (2005) outline that participation was mostly approached as a right of
citizenship in the context of development in both the global North/South from 1970s to
1990s. Citizenship was defined as a set of socio-political practices that determine a
person’s status and rights as a member of a community in which the person can access
socio-economic resources (Hickey and Mohan 2005). Conceptualising citizenship more
broadly than as a community membership, Tilly (1995) argues that citizenship
represents practices in which individuals and groups maintain and claim their rights and
that citizenship can be claimed from below by the marginalised groups. In line with this,

44
the concept of participation has started to move towards political participation and
encouraging the influence of marginalised groups over the broader development policy-
making processes (Cornwall 2000).

In disability literature ‘citizenship’ has a different connotation to its use in development

studies. Citizenship has been used as a concept to theorise disability in connection with
barriers from society, covering such issues as social justice and rights, political
engagement, human rights, participation in community, and others (Howard 2013,
Sépulchre 2017). Since the 1990s, studies on disability and citizenship from the global
North increased because of the extensive use of the concept of citizenship in academic
work and political rhetoric, expansion of disability studies underpinned by the social
model and rights-based framework, and the use of the citizenship concept by the
disabled people’s movement to claim that disabled people are full citizens as opposed
to ‘dependent patients’ (Sépulchre 2017: 953).

While more studies have made connections between rights, participation and
citizenship, little is known about what such connections mean for disabled people
themselves and how they are realised in different contexts (Gaventa 2002).
Furthermore, the meaning of citizenship in relation to rights and participation of people
with disability is frequently left undiscussed. People with disability tend to be considered
as homogenous, and such studies overlook the fact that ‘citizenship is a mutual
relationship and that persons with disabilities contribute to their communities, albeit in
informal and unpaid work schemes’ (Sépulchre 2017:954). Research is needed to
further examine the relationships between rights, participation and citizenship in the
context of disability mainstreaming in development and what these connections mean
to people with disability. Bringing in understandings of citizenship from both
development and disability literature can inform better approaches to understand full
participation of people with disability in development as required by the UNCRPD.

This thesis attempts to contribute to filling the gaps identified earlier in Section 2.1, 2.2
and 2.3 by examining what DIB means to people with disability and their expectations
regarding their participation in this policy for disability mainstreaming in development.
In understanding the expectations of people with disability for their participation in DIB

45
and broader contexts of development, this thesis utilises the relevant concepts in
disability rights, development and citizenship studies. Previous literature indicates the
importance of linking participation in development with citizenship (Gaventa 2002,
Hickey and Mohan 2005, Howard 2013). Disability mainstreaming in development
requires participation and leadership of disabled people as citizens in all phases of
development (CBM 2006, UN DESA 2011). In understanding such participation and
leadership of disabled people, there is a need to know more about what relationships
between rights, participation and citizenship specifically mean to people with disability,
rather than only rely on universal definitions.

2.4. Conceptual framework for the study

The literature review in the previous sections draws from an interdisciplinary body of
knowledge that cuts across the disciplines of disability studies, development studies and
citizenship studies. The literature review established that a key task for this thesis is
addressing the gap in knowledge about disability budgeting that aims to mainstream
disability into all sectors in the global South, and what people with disability expect
about inclusion and participation in disability mainstreaming in development. In this
section, the conceptual framework that describes the main concepts of this study will
be spelled out. A diagram that illustrates the interrelationship of the following main
concepts that came from existing theories, the study participants and the researcher’s
analysis is provided on Chapter Four to clarify the methodological aspects of
implementing this conceptual framework in relation to the data analysis (see page 93-
94).

a) Rights based approach to disability

Over the last decades, particularly with the advent of the UNCRPD, disability has become
a very important issue of human rights on a global level including the countries of the
global South (Schiemer 2017). At the heart of a rights-based approach to disability lies
the recognition that people with disability are active subjects with legal claims to their
rights, and not merely passive recipients of aid (Worm 2012). To explore how DIB

46
emerged in Indonesia, this thesis draws on theories on the rights-based approach to
disability.

A rights-based approach to disability and inclusion are central principles in the UNCRPD
as reflected in the preamble and the language of its articles. Consequently, disability
movements have drawn on these ideals to push their governments to make a shift from
welfare to rights-based approaches to disability in their policies and programs (McEwan
and Butler 2007, Degener 2016). However, some disability scholars opine that the
application of rights-based approaches to disability in development across cultures,
particularly in the countries of the global South, is problematic (Katsui 2008, Stubbs
2009, Grech 2009). The challenges in operationalising the rights-based approach to
disability in development in the global South include: a) complex conception of disability
from culture to culture and very diverse disabled people as well as complicated
development contexts such as urban-rural, gender, race and other dimensions of power,
b) the required shift from charity to rights is difficult to achieve in the global South
because welfare programs are still needed by a majority of disabled people living in
poverty, and c) the rights approach requires political mobilisation of disabled people
which is more than challenging in the global South where civil and political rights are not
secured (Katsui 2008, Stubbs 2009).

These insights raise the significance of understanding positive and negative impacts of
the rights approach to disability in development and its application in a specific context
in the global South. Evidence-based rather than theoretical arguments are required to
ensure that this approach is usable and useful in practice (Katsui 2008a). Drawing from
and adding to these arguments, this study examines DIB as a possible disability
mainstreaming mechanism underpinned by the principles in a rights-based approach
and looks at challenges as well as the opportunities in approaching disability in the rights
framework in Indonesia.

b) Inclusion in development

The main interrelated principles of the rights-based approach to achieve disability rights
mainstreaming in development are inclusion and participation of disabled people as
rights-holders (Albert and Hurst 2006, Katsui 2008, Worm 2012). Inclusion is a concept

47
pertinent both to disability rights and to development, and therefore for this thesis. This
thesis draws on the concepts of inclusion and participation to understand what people
with disability in this study expect from DIB processes.

The term ‘inclusion’ has various meanings in both disability and development literature.
Social inclusion in disability studies can mean people with disability are accepted as an
individual regardless of their impairments, are allowed to have relationships with family
and friends, to participate in recreation and social activities, to have employment and
many other things (Rohwerder 2015). In global South contexts there can be additional
meanings as disability inclusion emerged in response to the increasing discourse of
disability as a human rights issue (Oliver and Barnes 2010, Rohwerder, 2015).

Disability inclusion in the global South is framed around the UNCRPD and more recently
the SDGs that mention persons with disability within five of its 17 goals (Rohwerder
2015). With the emergence of disability inclusion in the framing of disability rights and
embodied in Disability Inclusive Development (DID), the focus of participation is on
maximising the inclusion of people with disability in development processes (Grech
2016). Disability Inclusive Development (DID) means development that actively includes
and benefits people with disability (DFAT 2015).

Inclusion is also a contested term in development studies. Pouw and Gupta (2017: 105)
explain that inclusive development is contested in four different ways:

‘The first refers to whether scholars and policymakers choose to use inclusive
development (where development is much broader than growth and may even
mean a steady state or de-growth), inclusive growth (where there is a focus on both
increasing growth and sharing the growth through, for example, employment
opportunities for all and redistributive mechanisms), or inclusive wealth (focusing
less on flows of income to reproducible stocks in society and includes the argument
that investing in growth may be at the cost of wealth.’

In this perspective there is a narrow understanding of inclusive development as an

economic process in which growth is redistributed across divides within society,
particularly to the poor. In a different perspective, inclusive development is also defined
as development that includes marginalised people, sectors and countries in social,

48
political and economic processes for increased human well-being, social and
environmental sustainability, and empowerment (Gupta et al. 2015: 546). Given that
inclusion is a contested concept with diverse interpretations in both disability and
development literature, bringing the inclusion concepts from both of these disciplines
will be significant to understanding a global South disability budgeting mechanism like
DIB because it aims to achieve Disability Inclusive Development.

c) Disability citizenship

Disability citizenship is a notion mainly understood in the literature as people with

disability having not only rights to all areas of citizenship but also that their citizenship
rights have to be accompanied and supported by legislation and policy that will remove
all barriers to participation (Darcy et al. 2016). This is because accessibility and inclusion
are the underpinning requirements for citizenship and full participation of people with
disability in all aspects of life including development (Darcy and Taylor 2009). Therefore,
disability citizenship is the third important theory that this thesis draws on to
understand the expectations of people with disability.

Morris (2005) outlines three aspects of disability citizenship as self-determination,

participation and contribution. Self-determination denotes that individuals can have
capacity for free choice and exercise their autonomy; participation includes political and
broader community participation; and contribution represents the value of disabled
people’s making contributions to economic and social life (Morris 2005, Smith 2013).
However, these concepts of disability citizenship originated from the global North. As
addressed in the previous sections of this chapter, values and insights from the global
North are not necessarily applicable to the global South. How citizenship is defined by
people with disability in the global South and/or how citizenship relates to disability in
the global South contexts is not yet known.

This section has discussed three overarching concepts that come from existing theories
in the interdisciplinary areas already reviewed: a rights-based approach to disability,
inclusion in development, and disability citizenship. Bringing citizenship together with
rights and inclusion concepts in a global South context is also a contribution of this thesis
to understanding full participation of disabled people in development.

49
2.5. Conclusion

This literature review identifies the need for more research about disability-budgeting
from the global South. While disability-budgeting in the global North is shown to focus
on individual or personalised funding for disabled people, emerging studies from the
global South look at disability-budgeting as a model inspired by identity budgeting such
as gender budgeting that is underpinned by concepts such as mainstreaming, rights and
inclusion. In relation to disability, the review has demonstrated that there is now a need
for more conceptual clarity about inclusion of disability and people with disability in
global South disability budgeting in practice in order to better understand the specific
policy mechanisms, how they are implemented by governments and how these can be
enhanced. There is also a need to explore the factors that may influence the
implementation of disability-budgeting as a multisectoral policy underpinned by the
rights-based approach to disability in development. Because the voices of disabled
people about inclusive development in the global South have rarely been addressed in
previous relevant studies, there is also a need for detailed exploration of people with
disability’s understanding and expectation for disability inclusion in State-led
development planning and budgeting.

In this literature review, pertinent concepts and studies from Disability and
Development literature are brought together. The significance of this is three-fold: a)
the epistemic encounters of disability and development studies are rare in the previous
literature, b) disability and development communities can learn from each other’s
language, tenets and priorities to advance emerging interdisciplinary research from both
disciplines, and c) theorising disability and development both in local and global contexts
is important for development scholars to more deeply understand disability issues and
significant for disability scholars to comprehend complex development issues in the
global South (McEwan and Butler 2007, Grech 2009).

By investigating the potential of DIB as a possible disability mainstreaming mechanism

to realise the rights of persons with disability in Indonesia, the new knowledge that this
Indonesia focused study generates may contribute to the theoretical gaps identified
earlier and to broader debates about disability and development in the global South. For

50
example, examining the challenges and potential success of DIB in Indonesia, that is
intended by the Indonesian government as a policy to implement the UNCRPD through
disability mainstreaming in development, may contribute to knowledge about barriers
and keys to successful implementation of the convention in the global South. To date
the potential of DIB to deliver disability rights mainstreaming has not been fully
examined. This thesis therefore offers an original and significant contribution to
emergent disability research on disability-budgeting in the global South and particularly
in Indonesia by exploring the potential of DIB as a government possible mechanism of
realising disability rights post ratification of the UNCRPD. The following chapter presents
a brief overview of debates about disability language, both internationally and in
Indonesia, that is significant to provide relevant contexts in understanding the findings
of this study.

51
 CHAPTER THREE

DEFINING DISABILITY IN INDONESIA

Debates about how disability is understood, and the language used to signify these
different understandings, play a significant role in disability studies and disability
politics, both internationally and in Indonesia. This chapter presents the international
debates about how disability is identified and labelled and how these are specifically
expressed in the Indonesian context. Section one introduces the terms ‘disability’,
‘people with disability’, ‘disabled people’, ‘penyandang disabilitas´ and ‘difabel’, and
provides an overview of how and why each term is used in this thesis. Section two gives
a history of how disability language has changed in Indonesia from the time of its
emergence in the policy context in 1947 until the present. Section three discusses and
critiques the emergence of the term difabel as a terminology advocated by progressive
disability activism in Indonesia, and Section four presents the debate around disability
terminology between disabled activists and the Indonesian government that has
occurred since the ratification of the UNCRPD. Overall, the chapter provides the reader
with an overview of the emergence of disability labels in Indonesia, insights into their
contemporary usage and the contestation which continues to inform disability
advocacy, activism and politics.

3.1. An overview of disability terminology used in the thesis

This section provides an overview of the disability terminology used in this thesis. The
terms, which are drawn from both global and Indonesian disability discourses, include:
disability, disabled people, people with disability, penyandang disabilitas and difabel.

a) Disability

The term ‘disability’ in disability studies is primarily used to refer to oppressive social
barriers that exclude people with disability from participation in society, rather than
physical or cognitive impairments of body or mind (UPIAS 1976, Barnes 2009, Retief and
Letšosa 2018). Proponents of the social model of disability argue that disability is a

52
socially constructed disadvantage imposed on disabled people (UPIAS 1976, Retief and
Letšosa 2018).5 However, many scholars have criticised the social model’s creation of
binaries between society, body, mind and impairment, and argue that disability should
be seen as a multi-faceted phenomenon, in which various elements such as physical,
psychological, biological, social, cultural and economic elements together interact to
produce a complex experience of disability (Bhaskar and Danermark 2006, Shakespeare
2006, Owens 2015). Furthermore, Shakespeare (2006:51) argues that creating an
‘accessible environment minimises the inconvenience of impairment, but does not
equalise disabled people with non-disabled people.’

As discussed in the previous chapter, the emergence of the UNCRPD has introduced a
human rights approach to disability and a non-radical social model (Harpur 2012). The
non-radical social model factors in barriers created by society along with the impact of
impairments themselves (Harpur 2012). In its preamble the UNCRPD describes disability
as an evolving concept resulting from ‘interaction between people with impairments
and attitudinal and environmental barriers that hinders their full and effective
participation in society on equal basis with others’ (Harpur 2012: 3). This thesis follows
the concept of disability advocated in the UNCRPD. The references to ‘disability’ or
‘disabled’ in the following chapters thus denote any disadvantage experienced by
disabled people resulting from the interaction between their permanent or temporary
impairments and various attitudinal and environmental barriers that hamper their full
and effective participation.

b) People with disability and disabled people

Person-first language, such as ‘people with disability’ and/or ‘persons with disabilities’
is commonly accepted in Australia and the USA, and has been used in international
conventions, such as the UNCRPD. Person-first language focuses on personhood, and
aims to promote more positive perceptions of people with disability (Feldman et al.
2002). The use of person-first language is believed to benefit people with disability
because it relegates disability to a secondary characteristic and ‘prevents a common

5
The original social model also argued that capitalism caused the oppression of people with disability
and drew on Marxist concepts of radical economic reform (Harpur 2012).

53
occurrence of using disabling conditions as a noun rather than an adjective’ (Feldman et
al. 2002: 13).

Despite the prominence of person-first language, disability-first language, such as

‘disabled people’ is still the approach favoured by many people with disability when
describing themselves and is particularly identified with disability activism and
scholarship in the United Kingdom. Disability-first language can be interpreted in
multiple ways. The term ‘disabled people’ designates that individuals are disabled by
barriers created in society. Furthermore, for many, this term enables disability to be
expressed as both a characteristic and an identity, which, like any identity, can be worn
with pride by the person describing themselves. Advocates of this term criticise person-
first language as implying that disability is a problem located within the person
(Mackelprang 2010). In scholarship and in the disability movement, disability first and
person first terms are both widely used and heavily contested. In this thesis both ‘people
with disability’ and ‘disabled people’ are used interchangeably. This is because
‘disability’ and ‘disabled’ here does not mean inability or impairments per se, but the
disadvantage experienced by people with disability resulting from interaction between
impairments and various external barriers, as stated in the UNCRPD. Person first and
disability first terms are also used interchangeably in Indonesia and so the choice to use
these terms interchangeably here, also reflects preferences in the context in which the
thesis is set.

c) Penyandang disabilitas

The term penyandang disabilitas is the official term for people with disability in
Indonesia. It was adopted by the Indonesian government after the ratification of the
UNCRPD in 2011 to replace the various demeaning labels that were previously applied
to disabled people. In this term, penyandang means ‘the owner of’ and disabilitas is
adapted from the English word ‘disability.’ This was chosen as the official term in
Indonesia to align with the English word ‘disability’ used in International treaties, and
because it was not euphemistic, and it did not have any negative or undesirable
meanings (Maftuhin 2016). In this thesis the term penyandang disabilitas and disabilitas
are used when referring to Indonesian laws and regulations on disability.

54
d) Difabel

Difabel is the Indonesian adaptation of the term ‘differently abled’ (Suharto et al. 2016)
and is the term preferred by disability activists in Java and some other parts of Indonesia.
The meaning of the term difabel emphasises the ability of an individual with disability
over the focus on impairment. This term was introduced by disability activists in
Yogyakarta in the 1990s, and was intended as a counter discourse to deficit-oriented
labelling by government and society towards people with disability in Indonesia (Suharto
et al. 2016, Maftuhin 2016).

Difabel provides a positive identity for people with disability by focusing on people’s
abilities rather than their inability in the face of physical, environmental and attitudinal
barriers (Suharto et al. 2016). Advocates of the term difabel argue that they do not deny
the existence of impairments, but emphasise that all people have abilities and no person
is defective, including those with impairments (Purwanta 2012, Salim 2013). For
example, paraplegic persons can drive or can cook, but they do it in a different way or
with certain modifications and the output of their doing is obviously similar to people
without impairments (Suharto et al. 2016). In this way, difabel emphasises the ability of
an individual with disability over the focus on impairment and broadly aligns with the
social model of disability.

Purwanta (2012) further relates the term difabel to an effort by Indonesian disability
activists to counter the global North discourses of 'disabled' or 'disability', which have
produced a dichotomy of disability and normalcy or disabled and able-bodied. The term
difabel in Indonesia is also inflected with Islamic tenets that God never creates defective
human beings. All His creations are perfect and are able, including those with
impairments, who can fully develop their potential when given opportunities in an
accommodating environment (Purwanta 2012).

This thesis acknowledges the importance of respecting people’s right to use the term
difabel in describing themselves and uses the term difabel as it appears in quotations
from interviews and focus groups with participants with disability. Difabel was widely
used by the disabled participants in this study, and features particularly in the analysis
of the expectations of people with disability for DIB (see Chapter Seven and Chapter

55
Nine). This analysis reveals how identifying as difabel drives people with disability in this
study to claim their difabel citizenship in relation to their participation in DIB and
broader State-led development policies and programs.

3.2. Evolution of disability language in Indonesia

There is a close relationship between the evolution of disability related terminology in

Indonesia and the ways disability has been understood and articulated in government
policies and by disability movements. During the Old Order era (1945-1966) and the New
Order Era (1966-1998) in Indonesia, the State utilised various terms to refer to people
with disability. These included penyandang cacat (people with defects), penderita cacat
(persons suffering from defects), bercacat (having defects), kekurangan jasmani dan
rokhani (physically and mentally deprived), and penyandang kelainan (people with
abnormalities) (Suharto et al. 2016).

As Table 1 below sets out, the adoption of these terms by the Government of Indonesia
was largely influenced by the adoption of the medical model of disability by the Dutch
Colonial Government, political changes and disability activism. Table 1 also shows that
under the influence of international moves to a rights-based approach, official disability
terminology in Indonesia has shifted over time from penyandang cacat to penyandang
disabilitas following the ratification of the UNCRPD:

Table 1: The evolution of disability terminology in the Indonesian government.

No Period Terminology and Documents Important events
meaning in English
1 1947-1954 (Ber)cacat = with Undang-undang (Law) Suharso, an Indonesian
impairment(s) Nomor 33 Tahun 1947 graduate of the Dutch
tentang Ganti Rugi Buruh School of Medicine for the
yang Kecelakaan (on Indigenous, and later
compensation for work-re- Minister of Health in 1950s,
lated accident) introduced the medical
Undang-undang (Law) model of disability. He
Nomor 4 Tahun 1979 established a rehabilitation
tentang Kesejahteraan centre for people with
Anak (Child Welfare) disabilities and a prosthetic
centre for people with
physical disabilities in Solo.
This later became the

56
 biggest rehabilitation centre
in Indonesia with
continuous financial support
from the government.
2 1954-1974 Orang-orang yang Undang-undang (Law) The first implementation of
dalam keadaan Nomor 12 tahun 1954 segregated schools for
kekurangan jasmani tentang dasar-dasar disabled children based on
atau rokhaninya = pendidikan dan the types of impairments,
Persons who have a pengajaran di sekolah called Sekolah Luar Biasa
physical or mental untuk (special school for disabled
impairments seluruh Indonesia children).
(Fundamental Principles
for Teaching and Learning
for All Indonesian Schools)
3 1974-1980 Tuna such as in Undang-undang (Law) The government introduced
tunarungu (deaf ) = Nomor 6 Tahun 1974 new approaches to the
Javanese: loss, tentang Ketentuan- implementation of the
impairments ketentuan Pokok segregated schools. For
Bahasa: without, Kesejahteraan Sosial (on example, introducing SDLB
missing, lacking principal provisions in which was a special primary
social welfare) school for disabled children
Orang yang that accommodated
terganggu atau children with physical and
kehilangan sensory impairments in one
kemampuan untuk similar school.
mempertahankan
hidupnya =
Persons who are
disturbed or have
lost the ability to
survive
4 1980-2011 Penderita cacat = Peraturan Pemerintah 1990s witness the
Persons suffering (Government Regulation) emergence of Indonesian
from defects Nomor 36 Tahun 1980 disability activism
tentang Usaha particularly in Yogyakarta.
Penyandang Kesejahteraan Sosial Bagi
kelainan = Penderita Cacat (Welfare 1998 is The end of Suharto's
Abnormalities Services for Persons 32 year dictatorial regime
Suffering from Defects) which marked
Kelainan fisik, Peraturan Pemerintah unprecedented transition of
emosional, mental, (Nomor 72 Tahun 1991 Indonesia to a democratic
intelektual, tentang Pendidikan Luar political system.
dan/atau sosial = Biasa (on special
Physical, emotional, education) A rights-based approach to
mental, intellectual, Undang-undang (Law) disability policy was
and/or social abnor- Nomor 20 Tahun 2003 introduced by the Bamako
malities tentang Sistem Pendidikan Millennium Framework for
Nasional (on the national Action 1992–2002 and
system of education) renewed in the second
Biwako Millennium
Anak berkebutuhan Surat Edaran Direktorat Framework for Action
khusus (anak luar Jenderal Pendidikan Dasar (2003–12) Plus Five in which
biasa) = Dan Menengah (Circular Indonesia was a member
Children with Letter of Directorate state.
special needs General of Primary and
(special needs Secondary Education) In 2004, Indonesia
children) Nomor 380/G.06/MN developed a National Plan

57
 Tahun 2003 Perihal: of Action (NPoA RENAKSI)
Pendidikan Inklusi (on for People with Disabilities
inclusive education). 2004–13 (Ministry of Social
Affairs, 2004).
Penyandang cacat = Undang-undang (Law)
handicapped Nomor 4 Tahun 1997
people tentang Penyandang
Cacat (on handicapped
people)
5 2011- Penyandang Undang-undang (Law) Indonesia signed the UN
present disabilitas = persons Nomor 19 Tahun 2011 CRPD on 30 March 2007
with disabilities tentang Ratifikasi without reservations, and
Konvensi Hak-hak ratified the Convention on
Penyandang disabilitas (on 10 November 2011.
ratification of the UN
Convention on the Rights
of Persons with
Disabilities)
Sources: Purwanta (2012); Thohari (2012); Adioetomo et al. (2014); Edwards (2014).

As the table indicates, prior to 2011, government policies, regulations and formal laws
variously used the terms bercacat, penderita cacat, tuna, penyandang kelainan, and
penyandang cacat to refer to people with disability. All of these terms are based on a
deficit model of disability, focusing on bodily and mental deficits as the main problems
that cause the disadvantages experienced by people with disability. This view was
formalised by Law No.4 of 1997 on People with Defects. The prevalence of this model
for understanding and talking about disability demonstrates the Indonesian
government’s focus on disability as a social welfare issue from 1947 until the year before
the UNCRPD ratification in 2011.

3.3. Emergence of Difabel

The Reformasi (reform) movements, led by Civil Society Organisations at the end of
Suharto’s regime in 1998, gave momentum to oppressed minority groups, including
people with disability, to voice their aspirations (Antlov et al. 2008, Aspinall 2013, Fuad
2014). These groups demanded that the government pay more attention to
implementing programs for the realisation of equal rights of persons with disabilities in
all aspects of life (Thohari 2011). Progressive disability activists from Yogyakarta and
Central Java areas, also used this momentum to challenge the official language used to

58
describe disability in government policies, proposing the term difabel to replace the
official term penyandang cacat (people with defects) (Fuad 2014). However, even
though advocates believe the term difabel to be the most appropriate and positive term
for people with disability in Indonesia, it has not received official recognition at the
national policy level.

Suharto et al. (2016) argue that the term difabel was invented by Mansour Fakih who
was a leading scholar familiar to social activists in Indonesia. The circumstances under
which Fakih coined the term and the concept of difabel is not known exactly but the
similar English language phrase ‘differently abled’ was originally coined by the US
Democratic National Committee in the early 1980s as an effort to find a term with a
more positive light in place of the term handicapped (Smith 1985). It may be that Fakih
was influenced by the concept of differently abled during his stay in the United States in
the 1990s where he pursued his Master and PhD degrees at the University of
Massachusetts Amherst USA from 1990 to 1994 (Puthut 2004), and then introduced this
idea to his colleagues in the disability movements in Yogyakarta. Advocates of the term
difabel on the other hand strongly believe that the term originated in Indonesia out of a
fight against disablement through terminology and policies by those in power (Purwanta
2012, Salim and Syafi’ie 2014, Suharto et al. 2016).

This term has since gained popularity amongst people with disability and activists
through various campaign activities (Maftuhin 2016). Disability activists in Yogyakarta
and other regions in central Java promoted this term through their programs, names of
their organisations, media releases and talk shows on local radio and TV, and managed
to have the term used in some local regulations such as village and district regulation on
the difabel (Maftuhin 2016). An extension to the idea has also recently been introduced
by some scholars/advocates of the term difabel, in the concept difabilitas or ‘diffability’,
a uniquely Indonesian term which they claim denotes the consequence of impairments
as differences in abilities rather than disability (Suharto et al. 2016, Shojaei and Shahabi
2018).

59
3.3.1. Criticism and positive impact of Difabel

Despite its popularity among many disabled people in Indonesia, the term differently
abled that the Indonesian difabel term derived from has been criticised by some scholars
from the global North as euphemistic, and a concession to politically correct language,
which risks ignoring the individual biological and psychological effects of impairments
and special needs that a person with an impairments has (O’Neill 2011, Brown 2013).
Tarsidi and Somad (2009) both argue that difabel advocates incorrectly equate
‘disability’ with inability and question whether people with impairments are in fact
difabel, have different abilities.

Although difabel advocates maintain that they do not deny the existence of
impairments, this is not reflected in the literal meaning embedded in the term and
neither is it in its conceptual meaning, which emphasises the importance of ability. The
emphasis on ability can potentially distance the self from disability as a part of a
multifaceted identity (Cameron 2012). Such an approach suggests the possibility for
advocates of the term difabel to trivialise the actual disabling experiences of people
living with disability. It may also reinforce the importance of ableism and discourage
discussions about disability and what it means being a disabled person.

Regardless of the contested meaning of the term difabel, its emergence demonstrates
the efforts of the Indonesian disability movement to contest the negative and
demeaning term penyandang cacat attributed to people with disability in government
policies. Most importantly the term difabel signals an ideological dissension by labelled
people, who seek to contest the long-standing negative attribution of a term
emphasising their incapability, and to claim their right to an identity and nomenclature
based on their own preference and politics. Thus, while there may be a lack of support
from those in power and inadequate theorisation, the use of the term difabel works to
bring a more desirable impact and create a more positive identity for people with
disability. As will be shown in Chapters Seven and Nine, the positive identity associated
with the term difabel serves an important role in encouraging people with disability to
argue for their rights as citizens. This claim for difabel citizenship enables two key claims

60
- a demand for full participation in DIB, and also a claim for inclusion in state-led
development processes more broadly.

3.4. Ratifying the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD) – debating terminology

The contestation over the term to replace ‘penyandang cacat’ (people with defects) was
finally taken up by the Indonesian government at the time of the operationalisation and
translation of the UNCRPD into Bahasa Indonesia in order to ratify the convention. To
identify alternative terminology for disability in Bahasa Indonesia, the Indonesian
National Commission on Human Rights and the Indonesian Ministry of Social Affairs
(MoSA) held a seminar and workshop in 2009 at the MoSA’s Physical Disability
Rehabilitation Centre in Cibinong, inviting representatives from DPOs mostly based in
Java (Daksa.or.id 2015, Tarsidi and Somad 2009). Nine alternative terms were suggested,
with the three most recommended being difabel, orang berkebutuhan khusus (people
with special needs) and penyandang ketunaan (people with impairments) (Tarsidi and
Somad 2009). However, workshop participants failed to come to agreement on the one
preferred term to use in place of penyandang cacat and for the law to ratify the UNCRPD
(PPDI 2010). Following the failure of this process, MoSA and the Indonesian National
Commission on Human Rights (KomnasHAM) organised a separate expert meeting in
Bandung in March 2010 and at that meeting a decision was taken to use the term
penyandang disabilitas for the law to ratify the UNCRPD (PPDI 2010).

Some disability rights activists criticise the term penyandang disabilitas as retaining
elements of the deficiency model because the word penyandang, which means ‘the
owner of’, signifies that the main problems of disability lie with the person and their
impairment. As Irwanto states, the whole person is lost in the highlighted anomalies or
abnormalities that characterise the individual (Irwanto et al. 2013). Some also argue that
it was inappropriate to adopt a foreign term without considering local and cultural
values (S.A. Purwanta 2016, pers. comm., 4 August). Many disability activists,
particularly in Central Java, have advocated for difabel to replace penyandang disabilitas
as the official term referring to people with disability. They argue that the word

61
disabilitas itself conveys a negative connotation, because it retains the prefix dis- from
the English word disability. They also argue that the term penyandang disabilitas
references the medical model of disability, because it highlights physical and functional
deficits and does not acknowledge people’s abilities (Suharto et al. 2016).

Debate around disability language is also found in other countries, including the United
Kingdom and Australia. According to advocates of the social model view in the UK,
people with impairments are understood to be disabled by the barriers and
unwelcoming attitudes of society and therefore their preferred terminology is ‘disabled
people’ (UPIAS in Cameron 2015), where disability identity is a term of pride rather than
an attribution. In Australia, the preferred terminology is ‘person with disability’, which
acknowledges the person first before the disability to emphasise the value and worth of
the individual as a person (DPOA 2017). Clearly, disability is a contested identity in
multiple contexts (Cameron 2015) and this also is seen in the Indonesian context.

3.5. Conclusion

This Chapter provides both international and Indonesian contexts regarding the
disability concepts, language and terminology used throughout this thesis. It concludes
that while the term difabel may lack theoretical rigour, it has an important role to play
in empowering people with disability in Indonesia to develop a positive self-identity,
which extends to their claim for difabel citizenship, as discussed in Chapter Seven and
Nine. This thesis acknowledges the ongoing contributions of disability scholars and
activists internationally and in Indonesia, in continuing to shape the way disability is
understood and the central role of language to identify and label those understandings.
This thesis further recognises that the UNCRPD has created a platform for dialogue
between government and the disability movement in Indonesia, and thus the UNCRPD
definition of disability – which includes any disadvantage experienced by disabled
people resulting from the interaction between their impairments and external barriers
they experience – is the definition used throughout the thesis.

However, several terms are used when referring to people with disability, depending on
the context. While understanding that certain terms are preferred in different English-

62
speaking countries, this thesis uses the terms disabled people and people with disability
interchangeably. This usage stems from the common definition of disability under the
UNCRPD, as well as the way person-first and disability-first terms are used in Indonesia.
The official Indonesian terms Penyandang disabilitas and disabilitas are used when
referring to Indonesian laws and regulations on disability. And, the term difabel, which
is frequently used by disabled people to identify themselves, is used as it appears in
quotations throughout the thesis. Further discussion and analysis of this term and its
significance for the implementation of DIB can be found in Chapters Seven and Nine.

63
 CHAPTER FOUR
METHODOLOGY

This chapter outlines the methodology used to undertake this qualitative multi-method
applied policy study of the potential of DIB for realising the rights of persons with
disability in Indonesia. The use of multi-method in this thesis means utilising multiple
qualitative methods including participant observation, documentary analysis, interviews
and focus groups. This qualitative approach was chosen because this study is aligned to
applied policy research that investigates a policy initiated by a government and the
results of which are potentially implementable (Srivastava and Thomson 2009, Ritchie
and Spencer 2011). The study is also aligned with qualitative empirical research and
other traditions of reflexive disability research. Specifically, the qualitative approach is
more aptly suited to answer the contextual and dynamic research questions formulated
in Chapter One (Ritchie and Spencer 2002). The data generated in this study are also not
amenable to measuring or counting in quantitative methods. Qualitative approaches
are used to answer questions about experience, meaning and perspective from the
participants’ standpoint (Hammarberg et al. 2016). Furthermore, qualitative approaches
are also increasingly used to examine government policies (Ritchie and Spencer 2002,
Lewin and Glenton 2018). This chapter details the researcher’s positionality, the
research design, data collection and analysis. The study was approved by the Human
Research Ethics Committee at the UNSW Sydney Australia in 2016 (approval number
HC16220) and also received research approval from the Indonesian Ministry of Domestic
Affairs (approval number 440.02/768/Polpen) for the conduct of fieldwork in Yogyakarta
and Jakarta Indonesia.

The first section of the chapter presents the researcher’s positionality in the research,
providing a reflexive account of multiple positionings in relation to the study. The
second and third sections provide an account of the multiple methods of data collection
and the data analysis utilised to give rise to the study’s insights. The credibility of data
collection and analysis is established and the limitations of these methods are addressed
in the final sections.

64
4.1. Positionality

Disability scholars highlight the central importance of positionality and reflexivity for
researchers conducting disability related research (Tregaskis and Goodley 2005, Ostrove
and Rinaldi 2017). Questions such as, ‘Why you are doing this research?’ or ‘What made
you choose this research topic?’ are asked of all scholars including researchers with
disability. It would be insufficient for a disabled researcher to respond to such question
by simply stating that, “It is because I am a disabled person and I have a great passion
for disability rights.” There are multiple positionings embedded in my lived experience
as a person with disability, an Indonesian citizen, an activist in the Indonesian disability
rights movement, and in my status as a government official in Indonesia and currently
as an academic researcher. This all requires an analysis of my positioning to show how
this intersectionality has led me to this study and shaped the research process.

I was born with a profound physical disability, to a working-class family in Bukittinggi, a

small town in West Sumatra Indonesia. Although I have lived with quadriplegia my whole
life, my parents always said that my different physical condition was God’s blessing that
will never stop me from being what I aspire to be and to my making great contributions
to society and my country. This idea was firmly instilled in me throughout my schooling
years. My parents demanded that I go to mainstream schools when most of their
relatives, neighbours and friends suggested that I attend a special development school
or live in a nursing home as a way to normalise me. These attitudes from others were
reflective of the widely held belief in Indonesian society during the 1980s that being
institutionalised would be the best for my future and the proper place for disabled
people. Contrary to this, my parents believed that I was equally valuable as my non-
disabled brother and therefore was equally capable of learning in the way my brother
and other children without disability did.

Given this positive mindset, I continued my study in university and then pursued a
Masters’ degree on an international scholarship in Australia. Following graduation, I
elected to work for the Government of Padang City Indonesia at the City’s Department
of Social Affairs. Despite my significant academic achievements and a university degree
from overseas, disability remained the most salient feature most people attributed to

65
me. The first job assigned to me was a low-level job that had nothing to do with my
university degrees and skills: word processing letters. They assumed that a person in a
wheelchair is best suited to operate a computer because this job does not require much
mobility. The job was assigned without considering my access requirements and I had
to solve the issue by myself such as using an on-screen keyboard. Notwithstanding this
inappropriate employment placement, my role in the Department allowed me extensive
interactions with other disabled people and disability activists who regularly came to the
Department for various reasons. For example, some disabled people frequented the
office to submit proposals for funding support either for individual needs or for their
organisations. Some disability activists came to the department to invite government
officials to their workshops and seminars. These connections gave me valuable
opportunities to understand and work with people with disability and which encouraged
me to get involved in disability activism in the city and across Indonesia. My frequent
and close interaction with disability activists was eventually recognised by the
Department and in 2011 I became the liaison officer for the local Disabled People’s
Organisations (DPOs) in my city.

During my years of working in the government, I learned to negotiate the difficult

balance many disabled bureaucrats face, between the expectations placed on me in my
role as a government officer and the accountabilities and allegiances demanded by
disability activism. My colleagues in the movement saw to my education in disability
rights and the great importance of disability inclusion in all aspects of life. I felt keenly
their expectations of me to be an ally in making changes from within the government,
changes to ensure disability inclusion in government policies and programs. This
expectation was built implicitly on trust that I could and would convey their voices and
criticisms, given that I was disabled and that I shared their ideals. On the other hand, as
a disabled person with close links to DPOs, I was trusted by the Department to liaise with
disability activists in order to respond to their criticisms and to explain why the
government was not able to always meet their demands.

These tensions inherent in my position were not easy to manage. In responding to the
criticisms towards the government, I had to explain to my fellow disability activists the
reality of government that prevented the fulfillment of their demands. To my

66
supervisors in the Department, I gradually educated them and explained why disabled
people voiced their criticisms and demands and the importance of fulfilling those
demands. Explaining the symbolic and practical importance of disability rights to my own
supervisors at the Department was very difficult. They were inclined to strongly believe
that the traditional social welfare approach to disability – which had informed disability
policy making for many years – remained the most appropriate. Their view that they had
greater knowledge and experience in working in the disability sector than a junior
government employee like me was most confronting. This tension has inspired me to
conduct this study on exploring the potential of DIB as a government mechanism for
realising the rights of persons with disability in Indonesia. Investigating DIB in Indonesia
serves as the opportunity to study a phenomenon that is central to the movements in
disability rights and development globally and is aligned with my commitment to
disability rights.

Despite the challenges, my multiple positionings have afforded me many opportunities

that other researchers might not have had when undertaking the research and fieldwork
activities. Experience of living as a person with disability and the knowledge that I gained
from my active engagement in the Indonesian disability movements helped me
understand the lived situation and experience of disabled people and to sensitise what
was not explicitly stated during discussions. It is also likely that activists were willing to
be more open in expressing their views and thoughts with me as a disabled person.
Some participants in the focus groups, for example, told me that they were very happy
to be involved in helping me with the research because they believed that a disabled
researcher could relate better with their lived experience and problems. Being a
bureaucrat with good connection to the national ministries helped me understand the
language of government, accessing government documents not available publicly and in
reaching important elites to interview.

Such multiple positioning also shaped my relationship to the data. In investigating the
potential of DIB for realising the rights of people with disability in Indonesia, there was
a need to collect data from people with disability, disability activists and the government
policy elites: the three groups to which I have membership. My multiple positioning
enabled me to identify important information emerging from the three groups that was

67
not always stated explicitly. However, I was also cautious that being disabled and
sharing the experiences of living with disability with disabled informants could risk me
over-identifying with informants with disability, affecting my analysis. Other researchers
without disability might see things differently, resulting in a different reading of the
data. Therefore, I made special efforts to maintain as objective an analysis as possible. I
was aware that being a disabled researcher does not necessarily make me an expert in
the lived experiences of all my disabled informants who had various types and degrees
of impairments. People with disability are highly diverse and heterogeneous both in
their types and degrees of impairments and in their lived experiences of disability.

Given my positions as a researcher with disability, a disability activist and at the same
time a government officer involved in the policy making, I have a strong commitment to
voice the concerns, ideas and thoughts of my fellow people with disability. I see the
research that I do as influencing the disability policy landscape in Indonesia for the
better. My learnings from membership of the three groups has shown the difficulty of
the voice of people with disability being included, heard and accommodated. These
thoughts bring me to the notion of disability-inclusive research.

Research conducted in Ireland investigating the opinions of people with disability shows
the need for disability-inclusive research where people with disability should be engaged
as consultants or partners instead of merely the research subjects and, in the extreme,
where disability research should be conducted only by disabled researchers (Kitchin
2000). Having a disability does not necessarily mean that the study that a disabled
researcher is conducting will be non-oppressive (Tregaskis and Goodley 2005) and
therefore researchers with disability must take all required efforts to minimise, if not to
avoid, the risk that they may unintentionally abuse their power (Tregaskis 2004). This is
because the researchers with and/or without disability write academic articles, have the
academic voice and authority, have the education and the language which contributes
to the acceptability of what they write (Shakespeare 1996).

This study has yet to fully adopt disability-inclusive research apart from the fact that I
am a researcher with disability who will always do my utmost to voice the thoughts and
lived experiences of my fellow people with disability in the research. At the same time,

68
as a disabled researcher and a disability rights activist, I also aspire to make this study
an accessible academic work in which I write not only to the academic community but
also to people with disability, particularly to those who have contributed their thoughts
and ideas in this very research. Disability-inclusive research, in my opinion, is an evolving
process and a long-term commitment, not something that starts at the beginning of a
project and ends as the project is finished.

In conclusion, my multiple positionings as a person with disability, a disability activist,

and a bureaucrat influenced the entire research process from the selection of research
topic, relations with the research participants, to interaction with data. I used this
reflexivity in the entire research process to maintain an informed stance as an academic
researcher. I operationalised this reflexivity process by taking notes of my thoughts,
reactions, questions, assertions and hunches that emerged during the research process.
When possible, I also shared and discussed my reflections with my fellow disabled
researchers in Indonesia to further critically interrogate those reflections. In the face of
the challenges and risks flowing from my positioning as a person with disability, many
opportunities not available to other researchers arose from the intersectionality of the
multiple positioning during the research process; these opportunities helped me as a
disabled researcher to voice the concerns of those whom the study will impact on by
putting rigour and validity above everything else in order to contribute to improving
disability policy in Indonesia.

4.2. Research design

4.2.1. Study design
Srivastava and Thomson (2009) suggest that applied policy research is not limited to one
particular stream of data collection or methodology. Therefore, this study used multiple
qualitative methods to collect data that included documentary desk-based review of
policy documents, semi-structured interviews with government officials, and with senior
knowledgeable people of Disabled People's Organisations (DPOs). Tied with this were
focus groups of grassroots people with disability, as well as individual participant
observation. The use of multiple methods not only provides a more in-depth data set

69
but also increases the reliability of the findings by allowing validations (Srivastava and
Thomson 2009).

4.2.2. Sampling frame

a) Document selection

Sampling of the documentary data was done by purposively selecting government policy
and budget documents providing information about disability related programs and
disability mainstreaming in both Indonesian government disability and development
sectors issued between 2012 and 2016. This is the timeframe during which the
Indonesian government implemented the UNCRPD following its ratification in 2011. This
period also witnessed important events in Indonesia following the ratification of the
UNCRPD. The important events include: emerging disability rights local ordinances in
some regions; President Jokowi signing the Suharso charter to show his commitment for
promotion of disability rights; the drafting of Indonesian new National Plan of Action for
Human Rights that integrate disability rights for 2015-2019; and the success of
Indonesian disability activism to push for the enactment of a new rights-based disability
law (Edwards 2014, Nursyamsi 2015, MoNDP 2015).6

Purposive sampling was used for the selection of the documentary data. Purposive
sampling can be seen as a series of strategic choices made by researchers about where,
how and with whom they do their research, which must be tied to their objectives (Palys
2008). Bryman (2012) explains that generic purposive sampling is the selection of units
(people, organisations, departments, documents etcetera) with direct reference to the
research questions asked. As a method used in conjunction with other qualitative
methods, the purposive document selection in this study was guided by the central
research questions and the groups of people to be engaged as research participants in
the fieldwork. Such process is in line with Qualitative Document Analysis in which
researchers need to determine the relevance of the documents to the research

6
A charter signed by Joko Widodo to show his commitment to the fulfilment of the rights of people with
disability in Indonesia during his presidential campaigns in July 2014 (Laisila 2014).

70
questions and aims and decide if the documents’ content fits the conceptual framework
of the study (Bowen 2009).

The documents in this study were purposively selected based on the central research
questions and the identified purposive sample of the research participants. The
following table summarises how and what documents were selected and what was
extracted:

Table 2: A sampling of documents and data extracted

No Documents Reason for Method of Data extracted
selected selection retrieval

DIB implementation mechanism

Disability Rights Mainstreaming

Disability inclusive budgeting

Definitions (rights, inclusion,

Disability rights regulated

Stipulations on disability
Emergence of DIB

budgeting
DIB)

1 Law Number A new disability Searches of the 🗸 🗸 🗸

8 of 2016 on law in Indonesian
Persons with Indonesia with government online
Disabilities a focus on database of laws and
disability rights regulations at
enacted in April http://www.peratura
2016. n.go.id

2 The Guideline Provides Direct approach to a 🗸 🗸 🗸 🗸

for Disability information person known to be 🗸

Inclusive about what DIB involved in the

Budgeting and Planning is making of this
and Planning and its guideline and
published by implementation requested a copy.
Ministry of mechanism.
National
Development
Planning.

71
 3 Presidential This regulation Searches of 🗸
Regulation was issued to Indonesian
Number 75 of affirm disability government online
2015 on the as a rights database of laws and
National issue. regulations at
Action Plan http://www.peratura
for Human n.go.id
Rights 2015 –
2019.

4 Local Law of A local Direct approach to a 🗸 🗸 🗸

Yogyakarta disability law person known to be
Province referred by one of the
Number 4 of many other participating DPOs in
2012 on the provinces in Yogyakarta and
Protection Indonesia as a requested the copy
and first example of of the law.
Fulfilment of a local law
the Rights of developed with
Persons with reference to
Disabilities. the UNCRPD.
5 Government Sources of Keyword search of 🗸 🗸
press or information relevant online
media about what DIB government
releases, is, how it ministries and
reports and emerged and departments:
online how it works disability budgeting,
articles disability rights,
disability rights
mainstreaming, DIB.
6 DPOs’ media Sources of Online search of 🗸 🗸
releases, information relevant DPOs
reports and about DPOs websites keywords:
online views on what disability budgeting,
articles. DIB is, how it disability rights,
emerged and disability rights
how it works mainstreaming, DIB.

These documentary data were particularly useful for establishing the context for this
study and for understanding how disability has been mainstreamed in the policies and
programs of Indonesian state-led development post ratification of the UNCRPD. These
data helped to understand the factors that drove the emergence of DIB and to what
extent DIB has occurred. This understanding was important in exploring the potential of
DIB to realise disability rights with the research participants through interviews and
focus group discussions. Those documentary data included policy documents,
legislation, media releases, reports and online articles deriving from the relevant
ministries in Jakarta (national level) and the relevant departments in Yogyakarta (local

72
level) as well as from national and local DPOs that provided relevant information
particularly about DIB and its implementation as set out in Table 1. Most of these
documents were publicly available online from government websites and a few others
were officially requested. These documentary data were reviewed again together with
data collected from interviews and focus groups so that themes emerged from all three
sets of data.
b) Fieldwork site and participant selection

The fieldwork was conducted from 26 July to 24 October 2016 in Yogyakarta and from
26 October to 24 November 2016 in Jakarta in the form of interviews, focus groups and
participant observation. The samples for the interviews and focus groups conducted for
the study include government officials from relevant departments at the national and
local levels, senior persons from Indonesian national and local DPOs and grassroots
people with disability. The government officials were purposively selected from the
elites in ministries and departments relevant to development planning, budgeting policy
and disability issues in Indonesia at the national and local levels (Jakarta and
Yogyakarta).7

The sites for this study were Jakarta and Yogyakarta that respectively represent the
national and local levels of government in Indonesia. DIB is a strategy for the Indonesian
government to mainstream disability rights in national and local development policies
and programs. The planning and budgeting of development programs happen at both
the national and local levels. Yogyakarta province was purposively selected because it is
home to strong disability movements (Thohari 2011). The province also boasts the fact
that Yogyakarta city, the province capital, instituted a pilot project in the 1990s to make
the city accessible for people with disability (Thohari 2014). Yogyakarta also has a
Peraturan Daerah (Provincial Regulation) for disability rights which closely refers to the
UNCRPD. Many other local governments in Indonesia come to Yogyakarta for a
comparative study in relation to this disability rights regulation (Nursyamsi 2015). As

7
Defining elites is a challenging task because elite status is not static (Harvey 2010). The term elites in
this chapter is used to describe those people who at the time this study was conducted predominantly
occupied senior positions and were influential decision makers in the government departments (Harvey
2010).

73
addressed in Chapter Two, it was also in Yogyakarta that the difabel concept was
introduced for the first time (Thohari 2011). In addition, Yogyakarta is renowned as a
miniature of Indonesia because different ethnicities, races and religions live and grow
together peacefully (Nurbudi 2008).8

4.2.3. Recruitment and eligibility of participants

There are three groups of research participants in this study: government policy elites;
senior disability activists from DPOs; and grassroots people with disability with some
pre-existing knowledge of the UNCRPD and/or DIB. The different types of research
participants were recruited by different methods. The government officials were
purposively selected from ministries and departments for their expertise or involvement
in development planning, budgeting policy and disability issues in Indonesia. Some from
Jakarta represented the national level and others from Yogyakarta gave a local
perspective. The government officials can be categorised as policy elites (Thomas 1993,
Goldstein 2002), and were identified via ministries' public websites. Targeted officials
were contacted by letter (with the University's letterhead and acknowledged by
supervisors), that gave a brief outline of the study, the time requested for interviews,
the ground rules for interviews, how the information gathered would be used, how it
would be reported and where it would appear.

The recruitment of senior disability activists was done by contacting Directors of the
national and local DPOs in Jakarta and Yogyakarta via e-mails and/or telephone. This
initial contact provided basic information on the proposed study and sought the
nomination of a senior knowledgeable person from their organisations to participate in
the study. The recruitment of grassroots disabled people was done with the help of four
local partner DPOs based in Yogyakarta. The six partner DPOs at both national and local
level in Jakarta and Yogyakarta include National PPDI (Indonesia Disabled People's
Association), National HWDI (Indonesian Association of Women with Disability), SIGAB

8
The recent growing intolerance in Indonesia may show a different picture. For example, Carolina
(2019) reported that the Yogyakarta city that was once ‘the poster child of pluralism,’ where Muslims
and Catholics lived in harmony, has changed with rising incidents of religious intolerance with more
active presence of hardline Muslim pressure groups in the region.

74
(Institution for Advocacy and Integration of Differently-abled People), SAPDA (Advocacy
Centre for Women and Children with Disability), CIQAL (Centre for Improving Qualified
Activities in Life of People with Disability), and OHANA (Indonesian Organisation for
People with Disability). These organisations were chosen because they engaged actively
in policy advocacy as well as in the UNCRPD ratification and implementation processes
in Indonesia. For example, these DPOs use research and advocacy in public education
campaigns to promote changes to laws and policies, and are also very active in raising
awareness about the UNCRPD for government, society and people with disability
themselves.

The participants of Focus Groups were recruited through invitation posters and an
Expression of Interest (EOI). The partner DPOs helped to advertise the invitation to
participate in the Focus Group Discussion by posting the invitation via their social media
and printed posters at their offices along with the EOI forms, the printing costs of which
were reimbursed by the researcher. These DPOs stated their endorsement of the study
in their letters of support (see Appendix 1). EOI forms written in plain Indonesian
language contained brief information about the research and asked some demographic
questions that included name, contact number, gender, type of disability, residential
status, occupation, education, whether they had ever participated in trainings or
awareness about the UNCRPD, and types of support needed to participate (see
Appendix 2 Recruitment materials for EOI form). The EOI questions asked the type of
impairments, ensured participants were aged 18-55 (working and adult age in Indonesia)
and that they lived in the community and had received training or awareness raising on
the UNCRPD from the local DPOs.

Basic knowledge of the UNCRPD was important because the focus group participants
discussed their rights and needs as enshrined in the UNCRPD that DIB can potentially
address. More importantly, this particular selection criterion enabled the generation of
significant data from the participants about disabled people’s rights to development in
their own perspectives. The unique insight from disabled people in this study has
enabled the conceptualisation of difabel citizenship, which is a new knowledge that this
thesis generates (see Chapter Seven and Nine). This insight might not have been
captured if the participants had no basic knowledge about disability rights and if the

75
participants were beyond DPOs’ outreach such as disabled beggars and homeless
people. Despite the sensitisation programs on disability rights that Indonesian DPOs
have been continuously implementing, there remains a huge number of disabled people
living in both rural and urban areas who had rather keep relying on others’ charity to
live than empower themselves by joining DPOs because that is their life choice (Faqih
2013, Arjawinangun 2017, Leandha 2019).

EOI forms were forwarded either directly to the student researcher or to the DPOs who
passed them on. The prospective participants knew about this study from information
provided by DPOs and/or from disabled people already recruited who informed and
invited other disabled people to participate (snowball sampling). Eighty EOIs were
received from disabled people. Of these, forty six were deemed eligible against the
selection criteria. Thirty participants were selected out of the forty six eligible
participants based on the proportional gender distribution (fifteen males and fifteen
females), disability type distribution, age distribution, education level and occupation.
The remaining sixteen participants retained as possible reserves were mostly male and
had physical disability. Eligible selected participants were contacted by telephone for
confirmation of their attendance and other matters such as time for their availability
and the venue for the focus groups. The ineligible participants were contacted by
telephone, thanked for their interest and informed why they were not eligible and
referred to the partner DPOs should they need further help or information.

The invitation to participate was written in plain Indonesian language and contained a
description of the study, the details of how the focus group would be conducted, the
incentives to be provided, and instructions for obtaining and forwarding the EOI form
directly to the student researcher or via the DPO from which they found the invitation
to participate (see Appendix 2 Recruitment materials for the invitation poster). To re-
confirm, a letter of invitation (on the University’s letterhead and acknowledged by the
administrative supervisor) with the advertisement poster and EOI form attached were
emailed by early July 2016 to each of these organisations, setting out information on the
purpose of the focus group as a part of the research, and requesting their assistance in
recruiting people with disability to take part. Selection criteria for preferred focus group
participants' characteristics, date, time, venue and how the DPOs could help with the

76
focus group were included. The student researcher had preliminary contacts with the
director of each DPO to informally discuss the assistance needed in identifying
participants for the focus groups, which could include their members, patrons, clients
or people with disability from neighbouring villages who come to visit their offices.

The following tables describe the details for the participants of the interviews and the
focus groups conducted during the fieldwork in Indonesia:

Table 3: Semi-structured interviews with Yogyakarta provincial government officials

No. Participants Gender Organisation Date Duration
(Coded for Analysis)
1 LGOY1 M Department of Social Affairs 22/8/2016 1 hour
2 LGOY2, M Local Body for Planning and 24/8/2016 1 hour 15
LGOY3 F Development (Bappeda) minutes
3 LGOY4 F Head of Brebah Sub-District 4/10/2016 1 hour
4 LGOY5 M Department of Health, Bapel 4/10/2016 1 hour
Jamkesos (Implementing Unit
for Social Security)
Total 4 hours 15
minutes

Table 4: Semi-structured interviews with senior disability activists in Yogyakarta

No. Participants Gender Organisation Date Duration
(Coded for Analysis)
Code for Analysis
1 DAY1 M SIGAB (Institution for advocacy 4/8/2016 1 hour
and integration of differently-
abled people)
2 DAY2, DAY3, M, F SAPDA (Advocacy centre for 8/8/2016 1 hour
women and children with
disability)
3 DAY4, DAY5, DAY6 M, F, F CIQAL (Centre for Improving 8/8/2016 1 hour
Qualified Activities in Life of 20
People with Disability) minutes
4 DAY7 F OHANA (Indonesian 2/9/2016 1 hour
organisation for people with 45
disability) minutes
5 DAY8 M Provincial Commission on the 4/8/2016 1 hour
Rights of Persons with 30
Disability) minutes
Total 6 hours
35
minutes

77
Table 5: Focus Groups with grassroots people with disability in Sleman Yogyakarta
Province9
No. Participants Gender Age Type of Education Occupation Date
(Coded for disability
Analysis)
1 GPWD1 F 28 Physical Secondary Unemployed
2 GPWD2 M 35 Physical Secondary Self employed
3 GPWD3 M 22 Sensory Undergraduate Student
4 GPWD4 F 36 Physical Secondary Social worker 10/9/16
5 GPWD5 F 25 Sensory Primary Unemployed
6 GPWD6 M 42 Physical Primary Peasant
7 GPWD7 M 32 Physical Secondary Self employed
8 GPWD8 M 38 Physical Primary Self employed
9 GPWD9 M 21 Sensory Undergraduate Unemployed
11/9/16
10 GPWD10 F 34 Physical Undergraduate Private
employee
11 GPWD11 M 45 Physical Primary Unemployed
12 GPWD12 F 47 Intellectu Secondary Unemployed
al
13/9/16
13 GPWD13 F 35 Physical Secondary Private
employee
14 GPWD14 M 43 Physical Primary Carpenter
15 GPWD15 M 21 Sensory Undergraduate Student
16 GPWD16 F 44 Physical Primary Unemployed
17 GPWD17 M 52 Physical Primary Private
14/9/16
employee
18 GPWD18 M 23 Sensory Undergraduate Student
19 GPWD19 F 46 Physical Primary Self employed
20 GPWD20 M 24 Sensory Undergraduate Unemployed
21 GPWD21 F 42 Physical Secondary Self employed
22 GPWD22 F 38 Physical Primary Unemployed
23 GPWD23 F 44 Physical Secondary Self employed 15/9/16
24 GPWD24 M 46 Physical Secondary Private
employee
25 GPWD25 F 19 Sensory Primary Unemployed

9
Grassroots in this context means people with disability who are not disability activists and/or are
ordinary citizens.

78
 26 GPWD26 F 43 Physical Primary Unemployed
27 GPWD27 M 45 Physical Primary Self employed
28 GPWD28 F 42 Physical Primary Unemployed
16/9/16
29 GPWD29 F 27 Physical Secondary Self employed
30 GPWD30 M 49 Physical Primary Self employed

Table 6: Semi-structured interviews with national government officials in Jakarta

No. Participants Gender Organisation Date Duration
(Coded for Analysis
1 CGOJ1, CGOJ2 M, F Ministry of Social Affairs 27/10/2016 2 hours 40
(MoSA) minutes
2 CGOJ3 M Ministry of Home Affairs 31/10/2016 1 hour
(MoHA), Head of Policy
Analysis of the Legal Bureau
3 CGOJ4 F Ministry of National 8/11/2016 1 hour
Development Planning
(MoNDP)
4 CGOJ5, CGOJ6, M, M, Ministry of Finance (MoF) 11/11/2016 1 hour
CGOJ7, CGOJ8, M, M
Total 5 hours 40
minutes

Table 7: Semi-structured interviews with senior knowledgeable people from National

DPOs
No. Participants Gender Organisation Date Duration
(Coded for Analysis)
1 DAJ1 F National HWDI (Indonesian 16/8/2016 1 hour
Association of Women with
Disability)
2 DAJ2 M National PPDI (Indonesia 8/11/2016 1 hour
Disabled People's Association)
Total 2 hours

The Tables above show that, in total, eleven participants from government agencies
took part. Disability status was not asked of these participants, and there was only one
participant with visible physical impairments from the government groups. The
participants from DPOs included senior persons from each of the two national DPOs in
Jakarta and from each of the four local DPOs in Yogyakarta (Total 9). Six focus groups
were conducted with thirty grassroots people with disability in Yogyakarta (each focus
group consisted of three to seven persons).

79
4.2.4. Informed consent

Informed consent was required from all study participants. Prior to the commencement
of each interview or focus group discussion information about the study was discussed
with participants and consent was provided by signing hard copy consent forms. Verbal
consent was provided for participants with cognitive impairments after a simplified
consent script in plain language was read to them and for those who could not sign their
name due to their impairments.

4.2.5. Accessibility supports

Accessibility supports were provided for focus group discussions with grassroots people
with disability to maximise the participation of people with different types of
impairments. Support strategies included a support person as a communication
assistant, such as a sign language interpreter for participants with hearing impairment
and a person to explain in plain or simplified language to participants with intellectual
disability. Visual aids such as captioning of main themes being discussed through a slide
projector was also provided in each session. Participants with the need to bring a carer
were reimbursed for this cost.

4.2.6. Recompensing participation

Grassroots people with disability were recompensed for their participation in the focus
group discussions. Each of the participants received IDR150,000 ($15) in cash towards
the cost of travel or carer costs. As participation was voluntary no other monetary
contribution was made to participants. Refreshments and lunches were provided during
the focus groups. Liamputtong (2012) states that participants can feel more relaxed
when they eat and drink together and allow the researcher to clarify some issues in
further discussions. Participants in interviews were given a UNSW silver coloured key
ring as a token of appreciation.

80
4.3. Data collection

Empirical data collection was done via multiple methods, including interviews, focus
group discussions and participant observations. The details of the data collection
methods for each aspect are explained below.

4.3.1. Interviews

Interviews with the government officials and the senior disability activists were semi-
structured and often conversational in style. Government officials and senior disability
activists were interviewed only once because opportunities for follow up interviews
were limited and because of time pressures faced by this group. Interviews with the
government officials were conducted first because the information obtained from these
interviews informed the interviews with senior disability activists and focus groups with
grass-roots people with disability. Follow-up conversations with DPO representatives
continued within several events organised by the DPOs in which the researcher was
invited to participate. These were open-ended, organic and occurred in a naturalistic
manner during lunches and other informal occasions.

All interviews were conducted in Indonesian language because it was the preference of
the interviewees and was also the first language of the researcher. An interview guide
was developed (see Appendix 3) which comprised of a list of questions or specific topics
referenced to the research questions (Bryman 2012). Questions raised in the interviews
did not rigidly follow the sequence in the interview guides and additional questions were
also posed as needed during the interviews. Thus the interviews allowed room to pursue
other topics which were not in the interview guides but were viewed as important by
the interviewees in relation to the study's topic (Bryman 2012). This approach allows the
emergence of new important insights from the interviewees that might not have been
disclosed by rigidly following the pre-prepared interview schedules. All interviews were
digitally recorded and were transcribed as soon as possible after the interview.

81
4.3.2. Focus group discussions

Focus groups were used to obtain in-depth information from grassroots people with
disability. This method enables a group interview and at the same time interaction
within the group and the joint construction of meaning (Bryman 2012). Topics targeted
issues around the needs and rights of people with disability in Indonesia as enshrined in
the UNCRPD and how DIB can potentially address them. Identification of needs and
rights were defined by people with disability themselves since there are few previous
studies that have involved people with disability in Indonesia in identifying their needs.

Focus groups were conducted with six groups, one per week over a six-week period.
Each group consisted of five or six persons and lasted between two and three hours
(determined by the support needs of participants). This interval allowed time to review
each focus group process and content before the next. Focus group participants were
not selected on the basis of their gender. Each prospective participant was provided
with the FGD schedule and they opted for the week they were available at. Each group
included both males and females with equal chance of speaking. The choice of number
and size of focus groups in this study was based on the saturation theory in which data
saturation will be reached between twenty and thirty samples or less (Bryman 2012,
Liamputtong 2013). Therefore, information emerging from each focus group was
preliminarily analysed to see if data saturation had been reached by identifying when
additional information from the participants no longer generates new understanding.
Bryman (2012) argues that conducting too many focus groups can place pressure on the
research given the often significant time required to arrange groups and to transcribe
the recordings. Some qualitative research projects only need a smaller number of focus
groups or interviews because the sample size can be influenced by the theoretical
underpinnings of the study (Bryman 2012, Baker and Edwards 2012). For example, a
study that employs ‘Interpretive Phenomenological Analysis is likely to entail a much
smaller sample size because of the fine-grained analysis that is often involved’ (Baker
and Edwards 2012:18).

Focus groups were conducted on as informal a basis as possible so as to make the

process more an interactive dialogue and organic informal conversation. This was done,

82
for example, by starting the focus groups with greetings and ice breaking statements in
Javanese language, the local language spoken by the participants, by using Ngoko
dialect, an informal or casual version of Javanese language. The rest of the discussions
were conducted in Indonesian language because the researcher has limited proficiency
in Javanese language. Using Indonesian language was not an issue because the
participants also spoke this national language.

The discussions started with warm-up conversation topics such as the participants’ daily
activities or their backgrounds in which the student researcher was also able to share
his personal background particularly in relation to his disability and study. Such casual
opening conversations helped to reduce the formality of the discussions and to build an
atmosphere where the participants could feel comfortable to express their thoughts and
concerns. The focus groups were recorded with a digital voice recorder and a note taker
was used to capture visual group dynamics. The recordings were transcribed as soon as
each focus group was completed. Each of the focus groups was concluded with a group
photo.

4.3.3. Participant observation

Methodologically the field itself provided opportunities such as invitations to attend

events and meetings which DPO partners suggested would be valuable sources of
additional context and information. Participant observation was therefore adopted as
an additional data collection method which allowed a greater depth of understanding
of the discourses and practices of disability in local development and critiques of
government policies and programs. Participant observation can also identify ‘the hidden
transcript’ that allows the uncovering of passive resistance among minorities or
oppressed groups (Joo 2010).

During the four-month fieldwork in Indonesia, the researcher attended several relevant
meetings and events at the invitation of government agencies and the partner DPOs. At
these meetings, participant observation was conducted by both observing and
participating to varying degrees as set out in the following table:

83
Table 8: The events attended on invitations while conducting the fieldwork in
Yogyakarta
No. Event Site Activity Date
1 DPOs workshop on the Bantul, Participant observation during 15-17 Aug
Indonesian alternative Yogyakarta group discussions and 2016
report /UPR of human rights presentations:
2017, organised by OHANA. - Listening to the discussions and
presentations and taking notes.
- Asking questions and giving
comments during the discussions
and presentations.
2 Visit to IDEA office Sleman, Talking and discussing with 18/08/16
Yogyakarta Managers about disability
inclusion in local development
budgeting
3 The Temu Inklusi 2016, Kulonprogo, Participant observation during 24-28 Aug
organised by SIGAB Yogyakarta seminars, group discussions and 2016
presentations:
- Listening to the discussions and
presentations and taking notes.
- Asking questions and giving
comments during the discussions
and presentations.
4 The periodical monitoring Kepatihan Participant observation during the 29 Aug
meeting on the Danurejan, meeting : 2016
implementation of the local Yogyakarta - Listening to the discussions and
law on the fulfilment of the presentations and taking notes.
rights of persons with - Asking questions and giving
disability in Yogyakarta, comments during the discussions
organised by provincial and presentations.
Bappeda (Local Body for
Planning and Development)
of Yogyakarta
5 Visit to PPDI Sleman office Sleman, Talking and discussing with Chair 24
Yogyakarta and Vice-Chair September
2016
6 The high level meeting of Padang, Participant observation during 27-30
Mayors for inclusive cities in West seminars, group discussions and September
Indonesia, organised by Sumatra presentations: 2016
UNESCO and Padang City - Listening to the discussions and
Government presentations and taking notes.
- Asking questions and giving
comments during the discussions
and presentations.
- Facilitating and moderating the
seminars, group discussions and
presentations.
7 Visit to PPRBM Office Solo, Talking and discussing with the 3 October
Central Java Program Coordinator about 2016
disability inclusion in development
programs
8 Socialisation and one-stop Sleman, - Talking and discussing with 17 October
service for the Jamkesus Yogyakarta Director and Program Manager. 2016
(special health insurance for - Observing, taking notes and
persons with disability), talking with people with disability

84
 organised by Bapeljamkesos accessing the one-stop service of
Department of Health of the Jamkesus and the staff of
Yogyakarta Department of Health who
organised the event.

At these events, participants were informed that the purpose of the researcher
attending was to give further context to the research and signed approval was gained to
use a digital recorder as well as to use information collected from the meetings and
events for the study. In general, conducting participant observations through attending
various events and meetings enabled the student researcher to obtain valuable
information. For example, the two-day workshop in Bantul District held by OHANA and
Konas Difabel in August provided in-depth information and applied examples of what
the Indonesian government has done with their policies and programs in fulfilling the
rights of persons with disability following the UNCRPD ratification. The workshop was a
part of the activities to prepare for the alternative report to the UN or Universal Periodic
Review (UPR) on the human rights implementation in Indonesia. Another example, the
four-day Temu Inklusi in Kulonprogo District held by SIGAB by the end of August,
provided rich information about disability inclusion at the village level including
participation of disabled people in village development and budgeting. The use of this
material was useful to help put the materials from the interviews and focus group
discussions in context.

Fieldnotes were compiled as a way of capturing detailed accounts of the activities and
the reflections of the researcher as participant observer. These fieldnotes helped to
provide nuance and context for the empirical data collected through interviews and
focus group discussions. Two types of fieldnotes, reflexive notes and descriptive
observation notes, were developed with the help of the research assistant (scribing
fieldnotes dictated by researcher who is unable to take written notes due to his
impairment). Reflexive notes documented the researcher’s thoughts and impressions in
relation to activities and conversations with different people in the field throughout the
period of fieldwork. Descriptive observation notes functioned to document the details
of the activities themselves including workshops, government meetings, DPO meetings,

85
lunches with DPOs, seminars, and inclusive village gatherings. Fieldnotes were compiled
both on the spot and after the events at home together with the research assistant.

4.3.4. Research assistant

A research assistant was required to provide assistance mostly with difficulties of

accessibility in undertaking fieldwork activities. This individual was required to have
some experience with research fieldwork but also experience in working with disabled
people. The research assistant undertook prior visits to the sites to check accessibility
for wheelchairs, drove the researcher to meetings/interviews, handled logistics during
interviews, circulated the research advertisements and arranged meetings in the field
as well as helped with scribing the fieldnotes and finding wheelchair-accessible
accommodation during fieldwork. The latter was the most difficult task.

The research assistant was recommended by a colleague of the researcher’s from the
University of Gajah Mada (UGM). Having had a short interview via telephone with this
person, he met the criteria and indicated he was happy to undertake what was
ultimately demanding work. The research assistant was trained in qualitative research
and he was briefed on ethical standards including confidentiality. This person proved
himself to be a great and reliable research assistant who also helped in providing
feedback and useful suggestions to the researcher.

4.3.5. Ethics

Standard procedures were followed regarding obtaining ethics approval, storing data
securely, ensuring informed consent and protecting confidentiality. Consent was sought
from all research participants before they engaged in the study. The consent information
for the grassroots people with disability was also written in plain language and/or easy
read style (simplified, direct, personalised) and read out to accommodate the inclusion
of people with intellectual disability. This information was explained in person on the

86
day of participation with assistance from a support person or a guardian of the
participant where appropriate.

As would be expected from a study of the lived experience of disability, participants

divulged sensitive information during interviews and focus groups. Such information
was treated with respect and confidentiality. Participants' privacy and anonymity was
protected by de-identifying individuals via the use of a coded naming system. For
example, government official participants drawn from national ministries in Jakarta and
local government agencies in the Special Region of Yogyakarta Province are denoted as
CGOJ (Central Government Official in Jakarta) and LGOY (Local Government Official in
Yogyakarta). The participants from Disabled People’s Organisations, similarly drawn
from the above sites are denoted as DAJ (Disability Activists in Jakarta) and DAY
(Disability Activists in Yogyakarta). Grassroots people with disability participating in the
focus groups are denoted as GPWD (grassroots people with disability).

4.4. Data analysis

The process of data analysis in this study was an iterative and recursive process. The
data analysis commenced with the data collection processes and continued throughout
all the phases, towards the final conceptualisation of the study findings (Bryman 2005,
Bryman 2012). This section provides detailed description of data analysis approaches for
both documentary data and interview data collected during the fieldwork.

4.4.1. Documentary data (policy analysis)

The documentary data were analysed using Qualitative Document Analysis (QDA). QDA
is defined as a systematic and rigorous procedure of document review or analysis that
requires the examination and interpretation of data to develop meaning, understanding
and empirical knowledge (Bowen 2009, Wach et al. 2013). The term ‘document’ can
cover a very wide range of different types of sources. Bryman (2012) explains that such

87
variability includes but is not limited to official documents deriving from state and
private sources such as legislation, laws and reports, mass media and virtual (internet)
outputs and personal documents in both written and visual forms.

Document analysis was the most relevant analysis approach in this study for several
reasons. First, this study aligns with applied policy research which is not limited to one
particular stream of data collection or methodology (Srivastava and Thomson 2009).
Desk-based research or document analysis is also commonly used in conjunction with
other qualitative methods such as interviews, group discussions or observations in policy
related studies that aims to corroborate findings across different datasets and to reduce
the potential biases from a single study (Bowen 2009, Ritchie and Spencer 2011).
Second, documents can provide background information and data about the context
within which the research participants operate (Bowen 2009). The data drawn from the
documents can be used to contextualise the data collected from interviews. No matter
how incomplete or uneven the documents, they can be very useful in pre- and post-
interview situations and in augmenting interview data (Bowen 2009). Third, documents
can serve as an effective means of tracking change and development as well as verifying
the findings from other sources of data (Bowen 2009).

The document review in this study, therefore, methodologically aims to contextualise

the data collected during the fieldwork and to refine the questions to be asked in the
interview and focus group schedules. The refined interview and focus group questions
resulting from the document analysis enabled the researcher to collect data in the field
which were coherent with the methodology in order to answer the central research
questions. The results of document analysis were reviewed again together with data
collected from the interviews and focus groups in order for themes to emerge across all
three sets of data.

Specifically, this document review aimed to examine the main driving factors for DIB’s
emergence, the implementation mechanisms and the extent to which this policy has
been implemented in Indonesia. The documents selected, based on the sampling
framework discussed earlier in sub-section 3.2.2, were reviewed, placed in context and
coded for analysis by employing the three-stage process of QDA.

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Qualitative Document Analysis requires that researchers immerse themselves in the
document texts and produce trustworthy and convincing data interpretations (Wesley
2014). Therefore, the first step was to establish the meaning of the documents and their
contributions to the issues being studied, to determine their relevance to the research
questions and aims, and then decide if the documents’ content fits the conceptual
framework of the study (Bowen 2009). In addition, critical self-reflection was also
exercised before and during the analysis and any personal biases were noted to guard
against partiality because the researchers should filter the raw documents through their
personal lenses to produce the data (Wesley 2014).

To be analytical and empirical, therefore, QDA is a three-stage process: open coding,

axial coding and selective coding (Altheide 2000, Wesley 2014). During open coding, all
documents captured via the sampling are read and any observable patterns in the text
recorded in order to identify general themes. The axial coding stage involved reviewing
the entire sample of documents and tagging particular passages as included under the
different categories of theme identified in the stage of open coding. In the last stage,
selective coding, documents are searched for discrepant evidence and mis-coded
passages (Wesley 2014).

The three-stage process in this document review combined elements of content analysis
and thematic analysis. Content analysis is the process of organising information into
categories related to the central questions of the study (Bowen 2009). Thematic analysis
is a process of recognising patterns within the data with emerging themes, which
become the categories for analysis (Bowen 2009). Throughout this process, memos
were kept to capture ideas and questions about DIB and disability rights as
understandings emerged and changed. These memos were developed at each stage of
the review process. A list of preliminary and secondary questions was developed to
guide the document review and to elucidate underlying concepts, practices and
processes of due relevance to this study and set out in Table 9 as follows:

Table 9: Questions developed to analyse key documents

Preliminary 1. Are the following terms mentioned in the documents? Where are
questions they mentioned?
a. disability right/rights

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 b. disability inclusive/inclusion
c. disability inclusive budgeting
2. Are disability right/rights or disability inclusive/inclusion or disability
inclusive budgeting explicitly defined in the documents?
3. Is there a specific statement regarding the disability inclusive
budgeting in the documents?
4. In what context is disability rights or disability inclusive/inclusion or
disability inclusive budgeting are mentioned in the documents?

Secondary 1. What terms are used in the government documents (national and
questions local) to relate to disability inclusive budgeting and disability rights?
2. What terms are used in the DPOs’ documents to relate to disability
inclusive budgeting and disability rights?
3. How are the government disability programs seen by the DPOs as
reflected in their documents?
4. How Disability Inclusive Budgeting is defined and understood in the
government programs or policies (national and local)?
5. How Disability Inclusive Budgeting emerged?
6. How disability inclusive budgeting is defined and understood in the
DPOs documents?
7. To what extent disability inclusive budgeting has been implemented
based on the government documents (national and local)?

This QDA was methodologically able to help in refocusing the central research questions
and refining the methods employed in the fieldwork. Inevitably this document review
also refined the interview schedules used for the semi-structured interviews and focus
groups. The review findings also brought forward some questions regarding the DIB
implementation mechanism for further exploration during the fieldwork.

4.4.2. Empirical (fieldwork) data

In preparation for empirical data analysis, all interviews and focus groups were
transcribed verbatim as soon as possible after each session was completed. Over half of
the interview and focus group transcription was undertaken by a professional
transcriber who was a native speaker in both Indonesian language and Javanese
language; the remainder was completed by the researcher with the help of the research
assistant. Most of the participants in the interviews spoke Indonesian language, but

90
sometimes they uttered a few Javanese phrases or sentences that the transcriber and
the research assistant had to translate into Indonesian language.

Each transcription was read and re-read several times while listening to the digital
recordings of the interviews and focus groups to ensure accuracy of the transcriptions.
Doing this enabled immersion in the data and allowed attention to the contextual
meanings of the conversations in both the interviews and focus groups. To maintain
closeness with the data and to capture the contextual nuance of the conventions, all
verbatim transcriptions were analysed in Indonesian language, the first language of the
researcher. Translation into English was undertaken by the researcher only for those
passages of data used as quotes.

The qualitative empirical data collected from interviews and focus groups as well as
fieldnotes from the participant observations were analysed by employing Framework
Analysis which is aptly suited for applied policy research (Srivastava and Thomson 2009).
This approach can be categorised as a thematic analysis. A framework that can assist
with thematic analysis is described as a matrix-based method for ordering and
synthesising data (Bryman 2012). In the analysis, data were sifted, charted and sorted in
accordance with key issues and themes (Ritchie and Spencer 2011). This was done using
five steps: familiarisation, identifying a thematic framework, indexing, charting,
mapping and interpretation (Srivastava and Thomson 2009).

a) Familiarisation

Familiarisation is a process during which the researcher comes to know the collected
qualitative data by listening to the recordings and/or studying the transcripts.
Throughout this process key ideas and themes emerge (Srivastava and Thomson 2009).
The three stage coding process was used here as well: 1) open coding, 2) axial coding,
and 3) selective coding (Sarantakos 2005). Transcripts were coded using NVivo 11
software with memoing used to capture recurrent themes and issues and their contexts.
During the coding processes, both elements that were physically present and countable
as well as those between the lines (participant concepts and theoretical concepts) were
noted. In the open coding, preliminary labels or codes were developed with reference
to the research questions as well as the interview and focus group schedules. Then, in

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the axial coding, codes were reviewed and similar grouped together. Selective coding
allowed the creation of categories to identify a thematic framework.

b) Identifying a thematic framework

The key issues and themes identified in the familiarisation stage were the basis for a
thematic framework to classify and filter the data which were refined at subsequent
stages of the analysis (Ritchie and Spencer 2011). Srivastava and Thomson (2009) explain
that refining a thematic framework involves both logical and intuitive thinking about the
relevance and importance of issues and implicit connections between ideas. In applied
policy research this also means making sure that the original research questions are fully
addressed (Srivastava and Thomson 2009).

In this step, codes and research notes (memos) are revisited and categories created in
order to identify the key issues, concepts and themes according to which data were
examined and referenced. A thematic framework matrix allowed data to be sifted and
sorted (Ritchie and Spencer 2011). A priori issues or the research questions and
interview/focus group questions were used to guide observation of emergent issues
raised by the research participants, and analytical themes arising from the recurrence
of particular views or experiences (Ritchie and Spencer 2011).

c) Indexing

When the thematic framework was identified, portions or sections of the data were
indexed in correspondence to a particular theme. NVivo 11 software was used to help
with this stage. All textual data from interviews, focus groups and participant
observations were read again and annotated or indexed according to the thematic
framework on the margins of each transcript using a numerical system (Ritchie and
Spencer 2011).

d) Charting

Having applied the thematic framework to each of the textual datasets, themes were
arranged into charts consisting of headings and subheadings drawn during the thematic
framework identification (Srivastava and Thomson 2009). Data were lifted from their

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original context and rearranged in accordance with the appropriate thematic
references. Charts were drawn up for each key theme or subject area and entries were
made for several research participants on each chart (Ritchie and Spencer 2011). The
charting here was done by entering a distilled summary of the research participants’
views or experiences on the chart or its abstraction and synthesis along with the relevant
referenced chunks of verbatim texts or quotations (Ritchie and Spencer 2011).

e) Mapping and interpretation

Mapping and interpretation formed the last step of the data analysis processes. Having
sifted and charted the data according to key themes, the key characteristics of the data
were interrogated in order to map and interpret the data set as a whole (Srivastava and
Thomson 2009, Ritchie and Spencer 2011). The original research questions guided this
process for themes and associations emerging from the data analysis. Charts and memos
were reviewed and the perceptions, accounts or experiences were compared and
contrasted. Subsequently patterns and connections were sought and explanations were
attempted for all these within the data. Here the salience and dynamics of issues were
weighed up and searched for a structure not only multiple evidence (Ritchie and Spencer
2011).

A diagram was used to help the process of mapping out the theoretical links among
themes and associations generated by the data analysis. The diagram was also useful for
further abstractions across themes and categories. The following figure illustrates the
process used to create an initial diagram for analysing and interpreting conceptual
categories developed from interviews, focus groups and participant observations.

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 UN CRPD & Right-based
National Disability Law

DID

DIB

To realise the
Recognition and
rights of PwDs
legitimacy as
capable citizens
Citizenship Rights
of Indonesian PwDs

Rights and Individual To fulfil responsibility to Active contribution to Meaningful Participation in state-
Participation Rights the state and society state-led development led development processes

Balance between rights Capable Comprehensive disability

and responsibilities Citizens inclusion in development

Inclusion of disability as a
Challenges foundational development issue

Measures in place to
Disability specific support participation
Non-disability specific

Persisting welfare Recognition for PwDs

/charity model in Limited capacity knowledge and capabilities
government policies (knowledge and resources)

The absence of systemic approach Addresses disability

Limited understanding of to ensure PwDs being essential needs in all programs
government officials on rights and integral part of participatory
based approach and DID development mechanism
Positions PwDs as
government partners
Physical inaccessibility and
societal stereotypes and The absence of accountability
stigmatisation mechanism to ensure legal
stipulations implementation

Psychological barriers Policy-practice gap

Figure 1: Initial conceptual mapping

The diagram demonstrates how the initial conceptual connections were systematically
drawn among those categories. This diagram generated a visual mapping that assisted
the exploration of further connections and abstraction across categories. This final stage
of data analysis also required the process of returning to the literature review and
theoretical framework, as well as going back to the related quotations in the
transcriptions to re-ensure conceptual accuracy as well as shuffling and re-shuffling the
connections amongst categories. The following figure shows the final conceptual
framework:

94
 Disability Inclusive Budgeting (DIB) in Indonesia

Rights-based Approach Citizenship and

to Disability Development
(Active Agents)

Inclusion Rights and

Responsibilities

Participation Recognition and

Legitimacy

Realising Disability Rights: Disability rights mainstreaming + Active

Contribution and Participation of Disabled People
in State-led Development

Figure 2: Final conceptual mapping

Figure 2 above demonstrates the refinement of the conceptual categories as well as the
connections amongst those categories. The conceptual framework generated five
concepts that came from existing theories, the study participants and the researcher’s
analysis that were used to understand the empirical data in this study: rights-based
approach to disability, inclusion and participation in development, citizenship, rights
and responsibilities, and recognition and legitimacy. As previously discussed in Chapter
two (see Section 2.4), inclusion and participation are the main interrelated principles of
the right-based approach to development. Participation means full involvement of
people with disability in State-led development. Inclusion is the underpinning
requirement for participation. Disability citizenship requires that rights and
responsibilities of disabled people to participate are recognised and legitimised.

4.5. Methodological limitations

Employing a multi-method qualitative approach to this applied policy study, this

research has been able to provide a contextual, detailed and nuanced account of the
phenomenon being studied. However, the utilisation of this approach also has limited
generalisation for the findings due to the sample that does not capture the diversity of

95
disability, the lack of representation from other government departments, limited study
sites, and no options for follow-up fieldwork. Methodological limitations are outlined
below and other limitations in relation to the study more broadly are discussed in
Chapter Ten.

Firstly, the involvement of participants with intellectual disability and complex support
needs as well as people with mental disability (the accepted category for people with
mental illness in Indonesia) in the focus groups was very low. While the sampling criteria
was open to people with all types of impairments, there was only one eligible participant
who disclosed an intellectual disability. No participants in the study disclosed a mental
disability. This limited take-up was likely related to one sampling criterion requiring that
the participants had some training or awareness-raising about the UNCRPD from DPOs.
People with intellectual and those with mental disability have only in recent years gained
recognition in the Indonesian mainstream disability rights movements. These disabled
people likely face greater barriers in accessing such training or awareness-raising
programs organised by DPOs. People with mental disability in Indonesia, in particular,
mostly live in rehabilitation institutions and mental hospitals (Nurjannah et al. 2015).
The lack of representation of people with intellectual disability and people with mental
illness in DPOs in Indonesia may have partly contributed to the under-representation of
these groups in this study.

This under-representation of people with intellectual disability and mental illness (called
mental disability in Indonesia) means that the disabled participation in DIB is only
understood from the perspective of people with physical and sensory disabilities. The
voices and perspectives of intellectually and mentally disabled people are undoubtedly
valuable to understand the participation of disabled people in DIB and more broadly in
State-led development. Their voices have given valuable insights distinct from those of
people with physical and sensory disability, who were the most numerous participants
in the focus groups. Future research is required to understand how people with
intellectual and mental disability see their participation in development. Furthermore,
this study also limits involvement to disabled people living in the community, and
excluded people living in institutions. It would be interesting to understand how

96
disabled people living in institutions perceive participation in development and what
they expect from DIB.

Secondly, the method of participant observation in this study also has limitations.
Participant observation was limited to attending events on invitations by the local DPOs
and the officials from local governments. Direct observations on the multi-tier
Musrenbang processes that involved disabled people were not possible. Follow up
fieldwork to directly observe the Musrenbang may have given opportunities to directly
observe how disabled people participated in this crucial mechanism for participation in
development. Data on participation of disabled people in the Musrenbang came only
from the accounts given by focus groups and interview participants. Follow-up fieldwork
to conduct participant observation for example in the Musrenbang meetings was not a
viable option for two key reasons: that the Musrenbang ‘s annual schedule within the
month of January did not align with the fieldwork which was conducted in July. The
additional fieldwork required was also logistically challenging given the researchers’
disability-related needs requiring greater funding support for fieldwork than was
available, as well as fatigue related to severe physical impairment which extended
follow-up fieldwork would likely cause.

The lack of representation from the National and Local Parliament or the Presidential
Office is also seen as a limitation of this study. These two bodies are important because
they are the ultimate decision-makers in development policies in Indonesia. However,
the bureaucratic complexity involved in securing meetings with members of these two
bodies made their inclusion in this study unviable. The sampling of only one Indonesian
province also limits the representation of a national picture and so is a further limitation.
The site purposively chosen was the Special Province of Yogyakarta and was chosen
because this province has the most progressive disability movement in Indonesia and is
one of the first provinces to pass the Perda, or Disability Local Regulations, that referred
to the UNCPRD prior to the National Disability Law. The findings from Yogyakarta
therefore in many respects represent the most likely case for success in Indonesia,
rather than reflecting the general situation across the country. Many other provinces
and cities in Indonesia have now passed Perdas, meaning that an extended study that
includes all other provinces may give a more comprehensive picture of a rights-based

97
approach to disability in development, and would show more representatively the
extent to which DIB has been fully understood and implemented nationwide. Similarly,
while the broadest possible range of government departmental representatives was
included in the research, the study has not been able to comprehensively investigate
the views of every department. Broader engagement may have shed further light on the
possibly multiple reasons why social welfare remains the dominant approach to
Indonesian disability policy making.

As noted earlier in this chapter, a qualitative research approach was selected for this
study to allow in-depth exploration of contexts, experience and perspectives, and the
allignment of this study with applied policy research and traditions of reflexive disability
research. While the focus of the study is on qualitatively drawing out issues for DIB as a
possible budget allocation mechanism for disability mainstreaming in development
programs, it does not present quantitative data and information that may help in
calculating the proportion of the government budget that would be expected to be
allocated to spending on disability.

4.6. Ensuring the credibility of data collection and analysis

Rigor of data collection and analysis was ensured by integrating different techniques
such as consensual validation, triangulation, reflexivity, prolonged engagement, regular
debriefing sessions and member checking (Lincoln et al. 2011). Consensual validation
was ensured through multiple stakeholders’ perspectives including disability activists,
grassroots disabled people, and government officials. Triangulation, multiple sources of
data, methods, theoretical and conceptual framework were integrated in the research
design. Being reflexive in the field about positionality and of the research process helped
with keeping track of problems, decisions, possible biases and interpretations in the
field. Although there might be cultural differences when it comes to disability
experiences – for example the researcher was from Sumatra whereas disabled
participants were all Javanese – the commonality of the disability experience helped
with better understanding of the stories of the focus group participants.

98
Familiarity with the context of the study was established through prolonged
engagement before the data collection process started. Prior to data collection, the
student researcher spent the first two weeks of the fieldwork conducting pre-visits to
the local DPOs who partnered in this study. The pre-visits were important not only for
establishing familiarity with the study contexts but also for developing good
relationships with the study participants. Such pre-visits were also in line with the
Javanese tradition of Kulonuwun, where new people initiate introducing themselves to
the host.

The pre-visits also allowed the student researcher to obtain important information for
the fieldwork such as key events to attend as well as to confirm the time and venue for
interviews convenient to interviewees. Debriefings were also conducted with
supervisors, peers and other researchers who were familiar with the research methods
and the context and area of this study. Debriefings aimed to obtain feedback from others
that may elicit alternative perspectives in the collection and/or analysis of data as well
as identify possible weaknesses during the course of research (Shenton 2004). As
described earlier in the methodological limitations, the student researcher was not able
to go back to the field. Informant feedback or respondent validation was conducted
from time to time during the data analysis by contacting the interview and focus groups
participants via e-mails, phone calls and social media in order to check and validate the
student researcher’s understanding and interpretation of the meanings of the collected
data.

4.6. Conclusion

This chapter has justified the appropriateness of the study design, detailed fieldwork
process, the methods used to collect and analyse data as well as information about the
research participants. It explained the theoretical and practical assumptions that
influenced the selection and application of the methods. Furthermore, this chapter
included the researcher’s reflexivity related to his multiple positionings that also
influenced the whole research process. The chapter also described the generation of the
conceptual framework that was used to explain the overall findings of this study
explored in the following findings and discussion chapters.

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 CHAPTER FIVE
DISABILITY INCLUSIVE BUDGETING IN INDONESIA:
EMERGENCE AND MECHANISMS

This thesis aims to understand the potential of Disability Inclusive Budgeting (DIB) for
realising the rights of persons with disability in Indonesia. This chapter is the first of four
chapters presenting findings towards this objective. Reporting on the documentary
analysis, this chapter maps and interrogates key policy documents relating to disability
and development in Indonesia between 2004 and 2017. This chapter examines the
conditions that prompted the Government of Indonesia to develop the legal framework
for DIB and goes on to critically examine the ways DIB is defined in its guidelines, how it
is to operate in the Indonesian context and the mechanisms currently in place for its
implementation.

The chapter begins by highlighting that the Government of Indonesia developed DIB as
one of their key policy efforts to mainstream disability rights into their development
policies and programs. The chapter goes on to demonstrate how the Indonesian
Government developed DIB in response to both internal and external factors. These
include the inadequacy of previous disability policies to realise disability rights and
international pressures, such as the country’s obligation to implement international
instruments such as the UNCRPD and the SDGs. These pressures combined to drive the
Government of Indonesia to change the direction of its disability policy from social
welfare to a rights-based approach and to develop DIB.

The chapter concludes by demonstrating that while the government of Indonesia has
taken considerable steps forward in creating the legal framework for DIB, achieving the
ambitions of this framework have been hampered by several factors. These factors
include, 1) a lack of regulation to guide the implementation of DIB, 2) a weak
implementation mechanism for the Disability Integrated Human Rights Action Plan
(RANHAM), 3) the complex and contested process of community consultations on

100
development decision making through Musrenbang, and 4) the lack of clear guidelines
for supporting participation of disabled people in Musrenbang.

This chapter is structured in four sections. The first section analyses the factors that have
driven the emergence of DIB in Indonesia. The second discusses the definition of DIB
and its underpinning principles. The third section describes how DIB is to operate with
its two main instruments and finally, the fourth section discusses DIB’s central
implementation mechanisms and draws out the factors that impede its implementation.

5.1. Tracing the development of DIB in Indonesia

The development of DIB by the Indonesian government was driven by several internal
and external influences. These influences mutually reinforced one another and
motivated the Indonesian government to adopt DIB. Before proceeding to an analysis of
these key influences, an overview is presented of the Indonesian disability-related policy
documents analysed in this chapter. The function and relevance of these policy
documents to DIB is shown below in Table 9 and outlines how the documents relate to
the Indonesian disability policy framework.

Table 10: Indonesian disability related policy documents and their relevance to DIB
No Policy Document Institution Function Relevance to DIB
1 President Instruction No.9 of President To officially adopt Influenced the
2000 on Gender gender design of DIB,
Mainstreaming in National mainstreaming as a however, DIB does
Development development not have President
strategy in 2000 Instruction.
onwards.
2 National Disability Action Plan Ministry of Social To improve social Poor coordination
(RAN Disabilitas) 2004-2013 Affairs (MoSA) services of people and funding lead to
with disability, disability being
protection and social integrated into the
security, and National Human
strengthen social Rights Action Plan
organisations that 2015-2019, which
provide social includes the
services for people formulation of DIB.
with disability.
3 Ministerial Decree Ministry of To guide the DIB is not issued in a
No.Kep.30/M.PPN/HK/03/2009 National implementation of ministerial decree
on Directive and Technical Development the President but only in the form
Instruction No.9 of

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 Team for Gender Responsive Planning 2000 mandating the of informative
Planning and Budgeting (MoNDP) gender budgeting guideline.
implementation by
all government
organisations.
4 Law No.11 of 2009 on Social MoSA To regulate the MoSA later, in Law
Welfare provision of social No.8 of 2016,
rehabilitation for appointed as the
people with coordinating
disabilities through ministry for
institutional and implementing Law
non-institutional No. 8, and programs
systems, including related to the
community- based fulfilment of the
rehabilitation and rights of persons
mobility with disability,
rehabilitation unit. including DIB
5 Ministerial Decree of Social MoSA To appoint MoSA as MoSA later
Affairs No.82/HUK/2010 on the focal point or the appointed as the
Duties and Procedures of the responsible ministry coordinating
Ministry of Social Affairs for disability issues ministry for DIB.
6 National Human Rights Action Ministry of Law To guide government Disability is not
Plan (RANHAM 2011-2014) and Human organisations in integrated in human
Rights promoting and rights promotion
enforcing human and enforcement.
rights. No This led to disability
mentioning of being integrated
disability or people into the 4th
with disability in its generation
seven main national RANHAM 2015-
programs, which 2019, which
focus mainly on includes the
organisational formulation of DIB
strengthening and
awareness raising for
human rights.
7 The Regulation of Minister of MoSA To categorise people MoSA later
Social Affairs No.8 of 2012 on with disability as appointed as the
Data Collection Guideline for PMKS, alongside 25 coordinating
People with Problems of Social other groups, ministry for DIB.
Welfare (PMKS). including beggars,
the homeless,
prostitutes, the ex-
convicts, the drugs
users, the poor and
other socially and
economically
disadvantaged
people.
8 Presidential Regulation President To officially adopt Formulation of DIB
Number 75 of 2015 the National Human Implementation
Rights Action Plan Guideline is one of
2015-2019 and 88 the 24 disability
human rights actions related actions.
to be implemented
by the government
organisations.

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 9 National Human Rights Action
Plan (RANHAM) 2015-2019
(disability integrated)
10 Panduan Perencanaan dan
Penganggaran yang Berpihak
kepada Penyandang Disabilitas
2015 (DIB Implementation
Guideline)
11 Law No.8 of 2016 on
Penyandang Disabilitas
(persons with disability)
12 Presidential Regulation No. 59
of 2017 on the Implementation
of the Sustainable
Development Goals
Ministry of Law To guide government The formulation of
and Human organisations in the DIB
Rights and MoSA promoting and Implementation
enforcing human Guideline is one of
rights. It includes 24 the 24 disability
disability related related actions.
actions out of its
total 88 human rights
actions.
Ministry of To guide government Implementation
National organisations to guideline for DIB.
Development implement disability
Planning inclusion in their
(MoNDP) programs and
activities.
People’s Overarching Mandates the
Representative legislation to protect allocation of budget
Council (DPR) the rights of people for the fulfilment of
with disability and the rights of persons
mainstream disability with disability but
into development. does not include a
Still designates MoSA specific article on
as the focal point for DIB.
disability related
national policies.
President To mainstream the The aim of this
SDGs agenda into the regulation is in line
Government’s with DIB’s principle
National Medium- of disability
Term Development mainstreaming.
Plan (RPJMN) 2015-
2019 that aims to
ensure prosperity for
everyone, including
people with disability

Policy documents number 4, 5 and 7 in table 9 show that disability is considered a social
welfare issue and is the responsibility of MoSA, which, based on the former disability
law, was also appointed as the focal Ministry for disability in the National Disability
Action Plan 2004-2013. Although a change towards a disability rights approach is seen
in the integration of disability into the National Human Rights Action Plan 2015-2019
and the enactment of Law No.8 of 2016 on Penyandang Disabilitas (persons with
disability), MoSA still plays a dominant role in the disability policy landscape in
Indonesia.

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5.1.1. Internal factors: The inadequacy of previous policies

Two internal factors appear to have motivated the Government of Indonesia to adopt
DIB as a focused mechanism to ensure disability rights mainstreaming in government
programs. It is important to identify these factors because it not only indicates what
drove DIB’s emergence internally, but also identifies issues in implementing DIB that the
following Chapter Six will take up. These are explored below.

a) Issues with RAN Disabilitas and RANHAM

The first internal factor to influence the Government of Indonesia to adopt DIB was the
ineffective implementation of both the National Disability Action Plan (RAN Disabilitas)
and the National Human Rights Action Plan (RANHAM) 2011-2014. As shown below,
several issues hampered the effectiveness of both these plans, including lack of
authority, lack of a clear implementing mechanism and lack of funding.

The Government of Indonesia formulated the National Disability Action Plan in 2004 by
adopting the Biwako Millenium Framework10 2003-2013 (HWDI 2015). To ensure the
implementation of the National Disability Action Plan, MoSA established a cross-
Ministry body called the National Coordination Team on Welfare Improvement of
Disabled People (Tim Koordinasi Nasional Upaya Peningkatan Kesejahteraan Sosial
Penyandang Cacat) (Irwanto et al 2011, Irwanto and Thohari 2017). However, ‘lack of
authority, clear implementation mechanism and funding’ meant that the National
Coordination Team struggled to implement the plan (Kasim 2014, Irwanto and Thohari
2017). The National Human Rights Action Plan 2011-2014 was beset by these same
issues, and when combined with the fact that disability was not specifically addressed
in this plan, little progress was made in ensuring the fulfilment of disability rights
(Attachment to the Presidential Regulation No.75 of 2015).

10
The UN ESCAP, at its fifty-eighth session, adopted resolution 58/4 of 22 May 2002 on promoting an inclusive,
barrier-free and rights-based society for people with disability in the Asian and Pacific region in the twenty-first
century, by which it proclaimed the extension of the Asian and Pacific Decade of Disabled Persons, 1993-2002, for
another decade, 2003-2012.

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The first issue was that the National Disability Action Plan was issued on the basis of a
circular letter from the Coordinating Ministry of Social Welfare (Irwanto and Thohari
2017) which lacked authority. Law experts have argued that, in the Indonesian legal
context, a circular letter cannot be categorised as law or regulation, and therefore is not
legally binding (Harningsih 2009, Salim 2009, Anggono 2015). This was seen to create
challenges for the National Coordination Team in achieving their brief because, in the
absence of a law or regulation, relevant ministries were not obliged to implement the
action plan.

Implementation of the National Disability Action Plan 2004-2013 was further hampered
by the lack of a clear implementation mechanism. Despite the involvement of the
Ministry of Health and the Ministry of Education in the National Coordination Team, the
National Disability Action Plan did not specify how the program was to be coordinated,
executed, monitored and evaluated (Irwanto et al 2011, Irwanto and Thohari 2017). In
practice this meant that the action plan was mainly implemented by MoSA, as the
government ministry with direct responsibility for disability. The final ‘serious problem
in the National Disability Action Plan 2004-2013 was lack of funding or investment to
implement the action plan’ (Irwanto and Thohari 2017:98) and so, as a result, the
realisation of the plan was far from satisfactory.

Similar issues also affected the National Human Rights Action Plan (RANHAM) 2011-
2014. The attachment to the Presidential Regulation No.75 of 2015 on National Action
Plan on Human Rights 2015-2019 identified that the implementation of the RANHAM
2011-2014 was generally ineffective because of:

1. Less optimal coordination among the implementing institutions. 2. Less

effective monitoring, evaluation and execution mechanisms of the
implementation of the National Human Rights Action Plan 2011-2014
(Attachment to the Presidential Regulation No.75 of 2015:4).

Specifically, RANHAM 2011-2014 lacked coordination and teamwork between

government ministries and local governments, lacked sufficient funding and lacked a
sufficiently capable implementing committee (Susetyo 2009). Together with the fact
that RANHAM 2011-2014 also did not include disability, these issues undermined efforts

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to advance disability rights in Indonesia and set the stage for the government of
Indonesia to introduce DIB.

In response to the issues with both of these programs, the Government of Indonesia
took a new approach by integrating disability rights targets into the National Human
Rights Action Plan (RANHAM) 2015-2019. This change of direction is outlined in the
Government of Indonesia’s first report11 to the UNCRPD Committee. The report states
that ‘the fourth-generation RANHAM includes 24 disability related actions out of its total
88 actions, which has made disability one of its major thematic actions’ (The UNCRPD
Report of Indonesia 2017:3). The DIB Implementation Guideline was one of the disability
related actions in RANHAM 2015-2019 (Attachment to the Presidential Instruction
No.10 of 2015 on Human Rights Actions: 6).

As shown, the inadequacy of previous disability policies, due to unclear implementing

mechanism, inadequate regulatory support and insufficient funding, created the
conditions for the Government of Indonesia to improve their efforts for disability rights
realisation. This improvement is to be achieved through the integration of disability as
a major theme in RANHAM 2015-2019 and the introduction of DIB as a more focused
mechanism to strengthen disability rights mainstreaming.

b) Limited capacity of the Ministry of Social Affairs to implement alone

The second internal factor motivating the government of Indonesia to adopt DIB was
the limited capacity of MoSA to implement disability mainstreaming on its own. As
discussed above, previous attempts at disability mainstreaming, such as the National
Disability Action Plan 2004-2013, were unsuccessful partly due to the limited capacity of
MoSA to influence other Ministries (Irwanto and Thohari 2017). The idea for DIB was
subsequently identified by MoSA as a key possible mechanism to support this
coordination function, particularly because the ministry has limited resources to work

11
Article 35 of the UNCRPD affirms that the State Parties are to submit the report for the Convention implementation
within two years of its ratification. In spite of ratifying the convention in 2011, the Indonesian government was only
able to submit the first report on 3 January 2017. However, this can be seen as progress in the efforts for realising the
rights for persons with disability in Indonesia (HRWG 2017 http://hrwg.org/2017/01/12/meskipun-terlambat-hrwg-
apresiasi-laporan-pemerintah-indonesia-ke-komite-disabilitas-pbb/).

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alone (MoSA 2012, MoSA 2014). In 2014, MoSA then approached the Indonesian
Ministry of National Development and Planning (BAPENAS), which has authority for
development planning and budgeting, to lead the development of the DIB
implementation guideline along with representatives from several national DPOs
(MoNDP 2015).

The DIB guideline, introduced in 2015, calls for all ministries to include disability into
their programs. However, it does not specifically mention which government body will
be responsible to coordinate this process (MoNDP 2015). This was clarified the following
year with the introduction of Law No.8 of 2016 on Penyandang Disabilitas (persons with
disability), which designated MoSA as a focal point for disability-related national
policies. According to Article 129 of Law No.8 of 2016 on Penyandang Disabilitas, MoSA
is responsible for the coordination of disability rights implementation and the allocation
of budget for disability rights mainstreaming in coordination with other ministries and
government bodies. This in effect means that MoSA is responsible for coordinating the
implementation of DIB. This coordination function means that MoSA is required to
ensure that other ministries and government organisations address the needs of people
with disability as part of their operations and include people with disability into their
program planning and budgeting processes. Concerns about MoSA’s capacity to
coordinate the implementation of DIB, given previous experience implementing the
National Disability Action Plan, are taken up in Chapter Six.

5.1.2. External factors

The document analysis shows two key external factors that have influenced the
emergence of DIB in Indonesia. The first is due to the international trend that promotes
ideas of disability rights and disability inclusion in development and the other is the
influence on gender mainstream budgeting popularised at the international level, and
implemented domestically.

a) International shifts from social welfare to rights in disability and development

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The growing global importance of various international human rights instruments and
the international trend to a human rights perspective on disability places responsibility
on all national governments. Changes in the landscape of Indonesian disability policy
since 2011 have been influenced by the international context of disability rights
realisation, in particular, the emergence of the UN Convention on the Rights of Persons
with Disabilities (CRPD) and the adoption of Sustainable Development Goals (SDGs) and
their ratification by a majority of countries worldwide.

The Government of Indonesia has an obligation to implement ratified international

conventions such as the UNCRPD by adopting the human rights approach to disability.
Such international obligations are seen in two key documents, the DIB Implementation
Guideline and the attachment to Presidential Regulation Number 75 of 2015 on the
National Action Plan of Human Rights:

Indonesia as one of the member countries of the United Nations has an obligation
to implement various international Human Rights instruments to which Indonesia
agrees such as the Vienna Declaration of 1993 and the Convention on the Rights
of Persons with Disability that was ratified by Law Number 19 of 2011 on the
Ratification of the Convention on the Rights of Persons with Disability. This calls
Indonesia as a part of the global society having a full commitment to eliminate all
kinds of discrimination and to ensure the participation of persons with disability in
all aspects of life. The Vienna Declaration and the Convention on the Rights of
Persons with Disability mandate that all States Parties implement the fulfilment of
the human rights of the vulnerable groups such as persons with disability. Such
realisation of rights is accommodated through the National Action Plan of Human
Rights (MoNDP 2015:45; Attachment to Presidential Regulation Number 75 of
2015 on the National Action Plan of Human Rights: 2-3).

The quotation shows that the Government of Indonesia takes seriously its obligation to
implement the instruments and its commitment to the fulfilment and protection of the
rights of people with disability in Indonesia (Indonesia Disability Convention Team 2017),
as exemplified by its ratification of the UN Convention on the Rights of Persons with
Disability (UNCRPD) in 2011 .

Following the ratification of the UNCRPD by Law Number 19 of 2011, a number of

changes occurred in Indonesian disability related laws and regulations that show the
emergence of a rights-based perspective. In addition to the introduction of new
terminology to address people with disability, as discussed in Chapter Three, Indonesia

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also enacted the new disability Law No. 8 of 2016 on Penyandang Disabilitas (Persons
with Disability) on 15th April 2016. This much expected and long-awaited law is said to
mark a significant and historical movement in shifting the country’s perspective towards
people with disability from a medical and social welfare focus to a human rights-based
approach (Ratnaningsih 2016). Article 27 of Law No 8 of 2016 also mandates the
disability rights mainstreaming across all government ministries including local
governments and mandates the inclusion of disability rights into government budgeting
processes. However, the law does not specifically stipulate that DIB is the mechanism to
be used by the government to achieve this purpose, despite the DIB guideline being
finalised six months earlier. More effective legislation of national disability law would
have provided a stronger basis for government ministries and agencies to implement
DIB.

The enactment of Law No. 8 of 2016 marks a paradigm shift regarding persons with
disability as active subjects and rights holders in Indonesia. This is seen most clearly in
Article 1 of the law that directly refers to the preamble of the UNCRPD:

Persons with disability are those with long term physical, intellectual, mental
and/or sensory impairments that in their interaction with attitudinal and
environmental barriers may experience hindrances and difficulties to participate
fully and effectively as the citizens on equal basis with others (Article 1 Law No. 8
of 2016 on Persons with Disability).

The rights-based perspective can be seen in this law’s definition of people with disability
above, with key elements important to this paradigm, such as interaction with
environmental barriers and full and effective participation on an equal basis with others.
The law also includes all provisions pertaining to disability rights as set out in the
UNCRPD as show in Table 11 below.

Table 11: Disability rights in the Indonesian Law Number 8 of 2016 on Persons with
Disability and in the UNCRPD

The UNCRPD Law number 8 of 2016

Article 5: Equality and non-discrimination Article 2: Principles for disability rights fulfilment,
point g. Equality and point c. Non-discrimination
Article 6: Women with disability Article 5, number 2: The specific rights of women
with disability

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 The UNCRPD
Article 7: Children with disability
Article 8: Awareness raising
Article 9: Accessibility
Article 10: Right to life
Article 11: Situation of risk and humanitarian
emergencies
Article 12: Equal recognition before the law
Article 13: Access to justice
Article 14: Liberty and security of person
Article 15:Freedom from torture or cruel,
inhuman or degrading treatment or punishment
Article 16: Freedom from exploitation, violence
and abuse
Article 17:Protecting the integrity of the person
Article 18:Liberty of movement and nationality
Article 19:Living independently and being
included in
the community
Article 20:Personal mobility
Article 21:Freedom of expression and opinion,
and access to information
Article 22: Respect for privacy
Article 23:Respect for home and the family
Article 24:Education
Article 25:Health
Article 26:Habilitation and rehabilitation
Article 27:Work and employment
Article 28:Adequate standard of living and social
protection
Article 29:Participation in political and public life
Article 30:Participation in cultural life, recreation,
leisure and sport
Article 31:Statistics and data collection
Article 32:International cooperation
Article 33:National implementation and
monitoring
Article 34:Committee on the Rights of Persons
with Disability
The table shows that all of the disability rights regulated in the UNCRPD are contained
in the provisions of Law Number 8 of 2016. The law also regulates and protects disability
rights unique to Indonesian local values such as the right to establish and to participate
in cooperatives (Article 11) and the right to believe in a particular religion (Article 14).
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Law number 8 of 2016
Article 5, number 3: The specific rights of children
with disability
Article 7: Right to freedom from stigmatisation
Article 18: Right to accessibility
Article 6: Right to life
Article 20: Right to protection from disasters
Article 9: Right to justice and protection of the law
Article 9: Right to justice and protection of the law
Article 26: Right to freedom from discrimination,
neglect, torture and exploitation
Article 26: Right to freedom from discrimination,
neglect, torture and exploitation
Article 25: Right to nationality
Article 23: Right to live independently and to be
engaged in the community
Article 23, point a: Personal mobility
Article 24: Right to freedom of expression,
communication and obtaining information
Article 8: Right to privacy
Article 8, point c: Respect for home and family
Article 10: Right to education
Article 12: Right to health
Article 21: Right to habilitation and rehabilitation
Article 11: Right to employment, entre-
preneurship, and cooperatives
Article 17: Right to social welfare
Article 114: Concession
Article 13: Right to participation in politics
Article 19: Right to public services
Article 14: Right to believe in a particular religion
Article 15: Right to participation in sport
Article 16: Right to participation in culture and
tourism
Article 22: Right to data collection
Article 136-137: International cooperation
Article 27-130: The implementation of disability
rights fulfilment and protection by national and
local government, monitoring and coordination
Article 135: The budget for disability rights
fulfilment and protection
Article 131-134: The National Commission on
Disability
Cooperatives (Koperasi) in Indonesia have long been considered as the main pillar (Soko
Guru) of the national economy built on the principle of social bond and altruism
(kekeluargaan) and working together for the people’s mutual benefit (gotong royong)
(Sulastomo 2016). Believing in a particular religion is one of the most important aspects
of life in Indonesia (Ishomuddin 2002). Despite being a country with a Muslim majority,
the State (government) protects the right of Indonesian citizens to practice any religion
or hold beliefs acknowledged by the national laws. Religion in most of Indonesian society
serves as a social cohesive to strengthen the values of humanity, caring, altruism and
tolerance (tenggang rasa and tepaselira) among people with different ethnicities,
culture, languages and religions, while at the same time building national stability and
unity (Ishomuddin 2002). Believing in a particular religion is essentially a private or
individual domain but the government guarantees the freedom of its people in choosing
a religion in order to maintain tolerance amidst the pluralism in Indonesia (Rudini et al.
1994).12

The move to a human rights-based model approach to disability issues in Indonesia

represents a paradigm shift in disability policy. This contrasts with the social welfare
approach reflected by the former Disability Law Number 4 of 1997 on Penyandang
Cacat. The term paradigm shift (pergeseran paradigma) appears in three policy
documents analysed, including Law No.8 of 2016 on Persons with Disability, the DIB
Implementation Guideline and Presidential Regulation No. 75 of 2015 on the National
Action Plan of Human Rights. The preamble of Law No. 8 of 2016 on Persons with
Disability affirms that, ‘A Paradigm Shift in understanding disability issues requires the
amendment of the old Disability Law Number 4 of 1997’ (Law Number 8 of 2016 on
Persons with Disability, emphasis added).

The same phrase also emerges in the preface of the DIB Implementation Guideline as
well as in other pages of the document:

12
However, there are concerns that such freedom of religion is curtailed by the obligation to only
profess the official religions recognised by the Indonesian government. Native faiths are not recognised
as religions and not having a religion or atheism is stigmatized against due to a false association with
communism particularly during the New Order regime (Heriyanto 2017). Furthermore, recent growing
intolerance and radicalism associated with hardcore Muslim pressure groups is also seen as a threat to
religious freedom in Indonesia (Marshall 2018).

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 The budgetary and planning policy is based on a new paradigm of fulfilling the rights
of persons with disability in accordance with Law Number 19 of 2011 on Ratification
of the Convention on The Rights of Persons with Disability (MoNDP 2015, emphasis
added).

The UN Resolution No.61 of 2006 on Convention on the Rights of Persons with

Disability (UNCRPD) was ratified in 2011 by Law Number 19 of 2011. This ratification
has produced a new paradigm in fulfilling the rights of persons with disability
(MoNDP 2015: 51, emphasis added).

The attachment to Presidential Regulation No. 75 of 2015 on the National Action Plan of
Human Rights that integrates disability also stresses that there has been a paradigm shift
in understanding disability from social welfare based to human rights based:

[...] Demands for the fulfilment of disability rights has got stronger following the
ratification of the UN Convention on the Rights of Persons with Disability that
produced a paradigm shift from social welfare based to fulfilment of disability rights
in all aspects of life (Attachment to Presidential Regulation Number 75 of 2015 on
the National Action Plan of Human Rights: 4, emphasis added).

The quotations from the Indonesian policy documents above show the significance of
the paradigm shift from social welfare to rights-based in fulfilling the rights of persons
with disability in Indonesia. The ratification of the UNCRPD by the Government of
Indonesia, which provides a strong foundation to formulate better legal frameworks and
policies on disability, has seemingly driven this paradigm shift (Indonesia Disability
Convention Team 2017), for example the enactment of Law No.8 of 2016 and the
formulation of the DIB guideline.

The paradigm shift is also seen with the adoption of Sustainable Development Goals
(SDGs) by the Government of Indonesia (MoNDP 2015). The 2030 Agenda includes
seventeen interconnected goals that serve as a universal call to action to end poverty,
protect the planet and ensure that all people including people with disability enjoy
peace and prosperity (UNDP 2017). People with disability are referenced eleven times
in the 2030 Agenda as seen in the following table:

Table 12: Disability in the 2030 Agenda

No. Section of the 2030 Agenda Disability References
1 Declaration ‘…to respect, protect and promote human rights and
- Human Rights fundamental freedoms for all, without distinction of
any kind as to race, colour, sex, language, religion,

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 political or other opinion, national or social origin,
property, birth, disability or other status.’ (paragraph
19)
- Vulnerable groups ‘People who are vulnerable must be empowered.
Those whose needs are reflected in the Agenda include
all children, youth, persons with disability (of whom
more than 80 percent live in poverty)’ (paragraph 23)
- Education ‘All people, irrespective of sex, age, race or ethnicity,
and persons with disability, migrants indigenous
peoples, children and youth, especially those in
vulnerable situations, should have access to life-long
learning opportunities...’ (paragraph 25)
2 Sustainable Development Goal 4: Education - 2 references
Goals and Targets Goal 8: Employment – 1 reference
Goal 10: Reducing inequalities – 1 reference
Goal 11: Inclusive cities – 2 references
Goal 17: Means of implementation, data – 1 reference
3 Follow-up and Review ‘They will be rigorous and based on evidence, informed
- Data disaggregation by country-led evaluations and data which is high-
quality, accessible, timely, reliable and disaggregated
by income, sex, age, race, ethnicity, migration status,
disability…’ (paragraph 74, g).

Implementation of the SDGs in Indonesia is in line with and builds on the existing
international and national commitments and mechanisms such as the UNCRPD, Law No.
8 and DIB. The table above shows that the SDGs articulate commitment to empower
people with disability under a number of goals and targets that are also found in the
UNCRPD. It can be inferred that the UNCRPD may serve as a guiding framework for
implementing the SDGs in order to realise the full inclusion and empowerment of people
with disability in development.

The SDGs were officially adopted by the Government of Indonesia through the
Presidential Regulation No. 59 of 2017 on the Implementation of the Sustainable
Development Goals. The efforts to mainstream disability rights, particularly via the
formulation of DIB as a key cross-government policy agenda, encompass both the SDGs
and the UNCRPD. This has created ‘an initial step for the Government of Indonesia to
implement disability inclusive development planning and budgeting’ (MoNDP 2015: 3).

Adoption of the human rights approach driven by the international obligations of the
Government of Indonesia has created the conditions for a paradigm shift in the

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conceptualisation of disability issues in Indonesia. This adoption of the human rights
approach is argued by Mitlin and Hickey (2009) to be a result of the pressure applied by
international development organisations who are committed to the rights-based
approaches to development in which the fulfilment of socioeconomic rights becomes a
significant objective. To comply with this international norm, Indonesia is required to
demonstrate a concrete change; and one that can immediately be seen is at the level of
the legal framework. Consequently, there is a possibility that the Government of
Indonesia might focus on change in the country’s legal framework of disability rights
because this is something that can be achieved within a relatively short time and can be
clearly shown in human rights implementation reports.

In this respect, the Government of Indonesia has shown its international commitment
by ratifying the UN Convention on the Rights of Persons with Disabilities with Law
number 19 of 2011. It hosted the Bali Declaration attended by the ASEAN leaders who
agreed on the promotion of persons with disability in ASEAN society 2015, particularly
through the Asia Pacific Decades for Persons with Disability 2013-2022 (Incheon
Strategies) and adopting the SDGs. The national commitment to a paradigm shift is seen
in terms of domestic policy and legal frameworks with reference to the UNCRPD such as
the new Disability Law No.8 of 2016 on Persons with Disability, the National Action Plan
for Human Rights 2014-2019 that integrates disability and the DIB implementation
Guideline.

Scholars suggest that the most important determinants of the realisation of rights in
countries of the global South lie in the political and social rather than the legal realm
(Rosser and van Diermen 2016: 337). The danger in only pursuing legal solutions is that
efforts to realise disability rights may only be implemented via legal framework change,
leaving changes in real world implementation of the laws and policies unaddressed.
These limitations will be addressed again more critically in Chapter Six and Chapter Nine,
which finds that there has been a disjuncture between policy and practice.

Nonetheless, such change in the legal framework and in policy is visible in the new
disability law and the DIB Implementation Guideline and is influenced by the paradigm
shift from social welfare focus to rights-based understanding of disability in Indonesia.

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This paradigm shift is driven by international moves to promote disability as a human
rights concern and disability inclusion in development.

b) Influence of Gender Responsive Budgeting

The adoption of Gender Responsive Budgeting, another international initiative, has also
influenced the emergence of DIB in Indonesia. As briefly addressed in Chapter One, the
Government of Indonesia officially adopted gender mainstreaming as a development
strategy in 2000, through the Presidential Decree No.9 of 2000 on Gender
Mainstreaming in National Development. To accelerate the implementation of Gender
Mainstreaming, government ministries were required by the Presidential Decree to
include gender perspective into their programs and activities through Gender
Responsive Planning and Budgeting in 2010. This domestic implementation of gender
mainstreaming, originally an international initiative, has set a precedent in diversity
budgeting for the Government of Indonesia, which has been extended to include
disability in an effort to realise the rights of persons with disability in Indonesia. 13 The
implementation of Gender Budgeting has provided lessons in formulating DIB (MoSA
2014).

The influence of gender responsive budgeting to inspire DIB is seen in the following
statement on an MoSA press release from 2014:

[...] The implementation of Gender Budgeting is a lesson learning in the

implementation of government planning and budgeting that is inclusive of persons
with disability (MoSA 2014).

The statement shows that the implementation of gender-responsive budgeting in

Indonesia has served as a model that can be replicated to develop a planning and
budgeting policy that is inclusive of people with disability. However, disability cannot be
directly equated to gender. The complex reality of impairments and the fact that
disability is connected to intrinsic disadvantage makes it incomparable to gender issues

13
Gender Mainstreaming emerged for the first time during the 4th United Nations World Conference on Women in
Beijing in 1995. The Member States including Indonesia were to develop a concept for the implementation of Gender
Mainstreaming as part of their national development strategies.

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(Shakespeare 2013). This is because ‘disability always has a biological dimension that
involves limitation or incapacity and sometimes frailty and pain whereas gender, race
and sexuality have minimal biological underpinning’ (Shakespeare 2013:88).
Furthermore, Shakespeare (2013:29) argues that ‘the oppression that people with
disability are facing is different and more complicated in many ways than gender, racism,
and sexism’. The application of budget mechanisms designed to equalise gender
inequality, without proper regard for the complexities of disability issues, is potential to
contribute to the challenges that the Government of Indonesia may face in the
implementation of DIB. For example, participation of disabled people may be
legitimated, but their special needs and the reasonable accommodations required for
that full participation can be overlooked.

This section has shown that there were a number of internal and external factors that
influenced the Government of Indonesia to develop DIB. Particularly influential were
issues with the implementation of previous domestic disability policy, and the
international trend towards disability rights and inclusion in development.
Understanding internal and external factors that have influenced the development of
DIB starts to uncover some of the current challenges in implementing DIB, as will be
discussed in detail in the following Chapter. These include a) lack of authority; b) lack of
a clear implementing mechanism; c) lack of funding; and d) concerns about MoSA’s
capacity to coordinate the implementation. Having examined why DIB was developed,
the next section examines what DIB is and how it works in the Indonesian context.

5.2. Disability Inclusive Budgeting (DIB) defined

In 2015, the Indonesian Ministry of National Development Planning formulated the

Guideline on Disability Inclusive Budgeting and Planning (hereinafter called ‘the
guideline’) (MoNDP 2015). This section introduces the definition, functions and
principles of DIB and provides an analysis of how DIB is defined in the Indonesian
context. It finds that despite some ambiguities in the language used to describe DIB, the
principles of inclusion and participation are paramount throughout the guideline.

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The full title of DIB guideline in Bahasa Indonesia is Panduan Perencanaan dan
Penganggaran yang Berpihak kepada Penyandang Disabilitas 2015 (a guideline for
planning and budgeting that is pro disability). The Indonesian word berpihak in the title
of the guideline literally means ‘pro, to side with, to take side or to favour’ (Pusat Bahasa
Departemen Pendidikan Nasional 2008:1142). DIB is understood literally as planning and
budgeting that is pro disability or that favours people with disability, with the term
berpihak commonly associated with the allocation of budget for people with disability
(Harry 2009, Pudyatmoko and Dewi 2017).

The term berpihak suggests that at its most fundamental level DIB is a tool to assist
governments in Indonesia to make more equitable budgeting and planning decisions for
people with disability. However, the role of DIB is not limited to budget allocation. As
can be seen from the definition and principles in the guideline, DIB emphasises and
creates a pathway for the inclusion and participation of people with disability in
development in Indonesia. The guideline describes DIB as:

[...] a tool that aims to reduce inequity faced by people with disability in their access
to, participation in, control and benefits of development due to their internal
(physical, mental, intellectual and sensory) and external (physical and social
environment) barriers (MoNDP 2015:36).

Three main functions of DIB can be derived from this definition: ‘1) to create equitable
budgeting, 2) to reduce inequity and 3) to offer wider room for participation of people
with disability in the development processes’ (MoNDP 2015:37). This shows that the
Indonesian government intends DIB to be a tool to realise equitable government
budgeting for people with disability by mainstreaming their rights and needs into
development policies, with their active involvement.

The implementation of DIB is further based on five main principles: 1) a decision-making

process to formulate future programs or activities that aim to offer solutions to the
problems faced by people with disability; 2) involving the experience, aspiration, needs
and issues of people with disability in the budgeting and planning processes; 3) direct or
indirect participation of people with disability; 4) specifying the priorities of
development programs and activities that will benefit people with disability; and 5)
allocating the budget that will benefit people with disability (MoNDP 2015:37).

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Principles 2) and 3) both emphasise the participation of people with disability in
development programs and activities as a key focus. This is beyond the function of
budget allocation as commonly understood from the term berpihak (Pudyatmoko and
Dewi 2017) and raises several questions about the term berpihak in the title of the policy
guideline. To what extent can a government’s program planning and budgeting be said
to be pro-disability? Is allocating a certain amount of budget for people with disability a
form of policy that favours persons with disability? If so, can this be termed pro-disability
when people with disability are not actively involved in its decision-making processes?

A brief exploration of the link between Disability Inclusive Development (DID) and
Disability Inclusive Budgeting (DIB) can help to address these questions and shed more
light on how DIB is defined and understood in the Indonesian context. The DIB guideline
states that inclusive development can help to realise disability rights in Indonesia and
that DIB is ‘the first step to implement Disability Inclusive Development’ (MoNDP 2015:
1). As addressed in Chapter Two, the implementation of DID requires full inclusion, in
which disabled people can determine the process and shape of the development they
are the beneficiaries of (Grech 2016). This implies recognising agency and self-
determination and the prioritising of participation of people with disability.

The term Inclusive Budgeting captures the participation of people with disability, as
advocated through DID (UN DESA 2011) more clearly than the term pro-disability
(berpihak), which is difficult to define and measure. An equivalent term in Bahasa would
be Pengangaran Inklusif Disabilitas. The term inklusif is already widely used across many
government programs, such as Pendidikan Inklusif (Inclusive Education), Kota Inklusif
(Inclusive Cities) and Pembangunan Inklusif (Inclusive Development) and across the
Indonesian disability movement.

Berpihak continues to be used in the DIB Implementation Guideline developed by the

Indonesian Ministry of National Development Planning (MoNDP). However, this analysis
shows that there is an ambivalence between the terminology used in the title of the DIB
guideline and the emphasis on inclusion and participation in the definition and
underpinning principles of DIB itself. Despite this ambivalence, inclusion and
participation of people with disability in development is still central to this mechanism.

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How this is operationalised within the Indonesian government budgeting system is
analysed in the following section.

5.3. How Disability Inclusive Budgeting (DIB) operates

The following section outlines how DIB is to be integrated into existing planning and
budgeting processes by both national and local governments in Indonesia. In general,
governments at all levels across Indonesia rely on two categories of documents for
development budgeting and planning: Strategic Policy Documents and Operational
Policy Documents. Governments in Indonesia will integrate DIB into these two
categories of documents using two instruments: Disability Inclusive Analysis and a
Disability Budget Statement. The guideline states that these two instruments are to be
applied in all phases of formulation of the strategic and operational policy documents
of ministries/agencies at the national level and of agencies or work units (OPD) at the
local level (MoNDP 2015).

The strategic policy documents function to outline government program planning for
national development within a period of time (Law No.24 of 2004, MoNDP 2015). They
are the basis for formulating disability inclusive programs and activities. They include
the national long-term development plan (RPJPN), the national mid-term development
plan (RPJMN), the government work plan (RKP), Central government Ministry/Agency-
specific Work Plans (Renja K/L) and the interim budget priorities and funding ceilings
(Pagu Indikatif) (MoNDP 2015). The operational policy documents function to guide the
implementation and budget allocation for program planning (Law No.24 of 2004, MoF
2015, MoNDP 2015). These documents include the state budget14 (APBN), Central
government Ministry/Agency Work Plans and Budgets (RKA-KL) and Central government
ministry/agency budget implementation check list (DIPA)15 (MoNDP 2015).

The formulation of the strategic and operational policy documents above occurs in
accordance with the national budgetary and planning cycle (MoNDP 2015). It takes
nearly a full year cycle to plan, draft, discuss and adopt a budget at both the national

14
A national budget drafted by central government and, following discussion and negotiation, adopted as law by the
DPR / the House of Representatives.
15
DIPA is a key document in State budget processes.

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and local levels. In the case of the State budgets (APBN), the process begins with
national-level community consultations on development planning (known
as Musrembangnas) held early in the budget planning year (in Indonesia, the fiscal year
runs from 1 January to 31 December). The government then draws up its budget
assumptions, policies and work-plans and submits these to the House of
Representatives (DPR) in May. In June, the DPR’s Budget Committee (known as Banggar)
meets with government officials to form a number of budget working groups. The
discussions involve all eleven of the DPR’s sectoral committees or commissions (Komisi
I-XI) who meet with representatives of ministries/agencies they oversight (MoF 2015).

By July, the DPR’s Budget Committee finalises its report of these preliminary discussions
and continues discussion of the budget outline. On 16th of August the President delivers
his budgetary discourse before Parliament, at the same time tabling the government
financial statement, the draft State budget and proposed work and budget plans for
each central government ministry/agency (the RKA K/L). The State budget is adopted
into law by a plenary session of the House of Representatives in October. Detailed
implementation of the budget is then spelt out in Presidential decrees and the budget
implementation check lists (called DIPAs) prepared for each ministry/agency. The
budget begins to be implemented on 1st of January. To anticipate possible changes, the
Indonesian budget law also provides for a mid-year budget revision process. The budget
revision processes reflect the normal budgetary process and end with the adoption of
the revised budget, known as the APBN-P (MoF 2015).

Within such an intricate process, to date there has been no stated mechanism for the
inclusion or active involvement of people with disability to enable them to influence the
budgetary decision making. Furthermore, the absence of definitive mandates for
ensuring participation – taking account of the complexities of ensuring the multiple
supports to enable participation of people with disability – mean this may be difficult to
enact. To the time of writing, the most tangible tool of DIB is still a guideline and is yet
to be supported by legislation or government regulation. This means that the obligation
to use the instruments of DIB currently remains at the discretion of government
agencies (the national ministries and the local government work units). This essentially
means that government agencies have no obligation to implement DIB in their programs

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and activities. As discussed in the following subsection, these factors can be stumbling
blocks for practical implementation of the aim and principles of DIB, as well as the
instruments of DIB guideline, Disability Inclusive Analysis and Disability Budget
Statement.

5.3.1. Disability Inclusive Analysis

As the first instrument of DIB guideline, Disability Inclusive Analysis is based on the
Investing in Ability Framework and aims to provide a framework for use by
ministries/agencies at the national level and work units (OPDs) at the local level as a
mechanism to ensure the identification of the needs of and issues faced by people with
disability (MoNDP 2015). This approach looks at disability issues not only from health
and social aspects but also focuses on more comprehensive aspects of life and capability
of people with disability (Irwanto et al. 2013). The approach is illustrated in the following
diagram:

(Irwanto et al 2013:12).
Figure 3: Investing in ability framework

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As shown in the life-cycle grid in the diagram above, disability can occur at any time
during one’s life. This ability framework emphasises the importance of approaching
disability issues with both preventive and rehabilitative measures as well as legal reform
to build a disability inclusive society. The social protection and rehabilitation schemes
are required to respond to the contexts and experiences of disability at any time in
individuals’ lives. Because of the unpredictable nature of disability onset, continuum of
care and services is required to prevent any adverse impacts of disability as early as
possible in the life course, thus mitigating the impacts of impairments on the individuals
and their families. Thus, ‘the ability of the individual can be preserved and enhanced’
(Irwanto et al 2013:12).

In this perspective, Disability Inclusive Analysis is to be done by examining the needs of

persons with disability based on their age, gender, types of impairments, and their
capabilities. The analysis also pays attention to aspects of disability rehabilitation and
prevention of adverse consequences of disability in life. Technically the Disability
Inclusive Analysis takes the form of identifying gaps and issues faced by people with
disability by examining the aspects of access, control and benefits (MoNDP 2015).

There are eight steps of Disability Inclusive Analysis that serve as the first stage of DIB
implementation: 1) analysing policies, programs, activities/sub-activities as well as the
objectives and targets formulated in the RKA-KL (Central government Ministry/Agency
Work Plans and Budgets); 2) identifying disability data and information from research,
reports and studies in order to examine existing inequities related to disability issues in
the work and budget plans for each government ministry/agency (RKA-KL); 3) identifying
disability issues both resulting from impairments and social disadvantages from the
aspects of access, role, control and benefit when formulating a program; 4) identifying
the internal and external factors that cause the disability issues; 5) reformulation of the
objectives of programs and activities of the ministries that are not inclusive of persons
with disability; 6) formulating an action plan or a systematic effort to respond to the
identified disability issues and their causes by reducing or minimising the causal internal
and external factors; 7) determining the basic data to be used as the reference; and 8)
determining the indicators for the Annual Work Plan (RKT) as the output as well as those
for the mid-term achievement as the outcome (MoNDP 2015:40).

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Disability Inclusive Analysis has the clear aim of identifying the problems faced by people
with disability and their needs, based on multiple factors intersecting with disability such
as gender, age, impairments, and capabilities. At the same time, political reform is
necessary to shift the development paradigm into an enabling process in which
administrative and legal barriers of the current state policies (that prevent or limit
people with disability to contribute and to participate) need to be eliminated (Irwanto
et al 2013). To date however, there has been no clear pathway or mechanism for
participation of people with disability in Disability Inclusive Analysis. Having involvement
of people with disability is very important at this early stage of DIB implementation
because the results of the analysis form the basis for formulating the Disability Budget
Statements (DBS), as discussed below.

5.3.2. Disability Budget Statement

The Disability Budget Statement (DBS) details how and in what ways a particular
program or activity is already inclusive of persons with disability. The DBS indicates
whether the budgeting of a program or activity has integrated considerations of the
needs of people with disability identified in Disability Inclusive Analysis. If the program
has accommodated the needs of people with disability, then the program budget is
already allocated based on the Disability Inclusive Analysis. This is also integrated into
the Terms of Reference of the Disability Budget Statement, which contains an
explanation of the proposed budget for a program or activity (MoNDP 2015).

In the national budgetary processes, the DBS is to be developed by the ministries and
submitted along with the Central Government Ministry/Agency Work Plans and Budgets
(RKA-KL) to the Directorate General for Budget of the Ministry of Finance. At the local
level, in the same way, the DBS is to be developed by the Work Units (OPD) and
submitted along with the Work Plans and Budgets of local government Work Units (RKA-
OPD) to the Finance Department (MoNDP 2015).

However, in terms of their application, neither the Disability Inclusive Analysis, nor the
Disability Budget Statement, explain how each of the ministries, agencies and local

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governments can ensure that they have all the required resources to apply these two
instruments of DIB. Nor do these instruments clarify how people with disability can
participate in developing and conducting DIA and DBS. Furthermore, there is no clarity
as to whether the government is willing and able provide the resources and reasonable
accommodation required to actively engage people with disability in this process.

The analysis of how DIB operates through its two instruments, Disability Inclusive
Analysis and DBS, shows that participation of people with disability is not guaranteed
although its importance is highlighted in the DIB Implementation Guideline. In other
words, there seems to be an inconsistency between the principles of DIB that promote
participation of people with disability and the instruments that operationalise DIB but
cannot ensure such participation. As will be seen in Chapter Five, such a gap causes
challenges in implementation of DIB and is an important factor contributing to the
Government of Indonesia’s failure to fully realise the rights of people with disability
through DIB. As we will see in the following section the implementation of the
instruments of DIB discussed above further depends on two key implementation
mechanisms.

5.4. Current Disability Inclusive Budgeting (DIB) implementation mechanisms

An analysis of government policy documents related to disability reveals that the

Indonesian government has yet to progress DIB (up to May 2019 and the writing of this
thesis) even though an implementation guideline has been available since 2015
(Attachment to the Presidential Instruction No.10 of 2015 on Human Rights Actions). In
addition, the timeline for DIB implementation, its reporting, accountability and
monitoring mechanisms remain unclear.

Law No.8 of 2016 on Persons with Disability stipulates the obligation of both national
and local governments to allocate budget for disability rights fulfilment and protection:

1) The national and local government are to allocate budgets for the fulfilment and
protection of the rights of persons with disability; 2) The budgets as referred in
Clause (1) derives from: a. National Government Budget; b. Local Government

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 Budget; and c. Other legal and non-binding sources of funds; 3) The other legal and
non-binding sources of funds as referred in Clause (2) point c is managed as per the
effective laws and regulations).
(Article 135 of Law number 8 of 2016 on Persons with Disability).

However, as previously mentioned in this chapter, a definition of disability-inclusive

budgeting is not found in this provision, nor in any other parts of the law although the
DIB Implementation Guideline was prepared prior to the law enactment. The provision
only stipulates that the sources of the budget for disability rights fulfilment and
protection consist of the national budget, local budget and other legal and non-binding
sources of funding. The provision above does not specifically stipulate what mechanism
will be used to allocate the budget for disability rights implementation, let alone the
timeline for its implementation and accountability mechanisms. And unlike other
provisions, it does not have any statement mentioning that further implementation and
mechanism will be reinforced by a government regulation or a presidential decree.

This suggests that the Indonesian government implementation of DIB lacks a robust
regulatory structure to ensure its success. An alternative approach, such as promotion
and introduction of DIB during the drafting process of Law No. 8 of 2016, may have
enabled more thorough implementation of DIB. In other words, it is likely that the DIB
Implementation Guideline designed by the Indonesian Ministry of National
Development Planning (MoNDP) has yet to be implemented because there is a lack of
regulation that specifically sets out instructions for its implementation.

As is commonly recognised, even ‘a national law will not automatically be implemented

in Indonesia without accompanying implementing regulations’ (Irwanto et al. 2010:17).
Morevoer, DIB is currently seen as only an informative guideline for government
agencies (MoNDP 2015). There is therefore no guarantee that a ministry or a local
government will apply DIB when they design their programs. As in the case of Gender
Responsive Budgeting, it was the MoNDP that piloted the implementation of this
initiative through a Ministerial Decree No.Kep.30/M.PPN/HK/03/2009 on Directive and
Technical Team for Gender Responsive Planning and Budgeting. However, this decree
was based on higher regulation (the President Instruction No.9 of 2000 on Gender
Mainstreaming in National Development) and mandated that the MoNDP initiated the

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gender budgeting implementation via President Instruction. This is not the case with
DIB.

If DIB is seen as only a guideline and its effective implementation requires widespread
and sustained awareness-raising efforts as well as clear milestones, accountability and
monitoring mechanisms for a ministry or a local government to internalise and
implement, it remains vulnerable to these agencies’ political will. Political will and
commitment relates to what is termed the policy-practice gap (Hickey and du Toit 2007),
that is, when the institutional capacity and resources exist but not the political will and
commitment (Hickey and du Toit 2007). This highlights the risks that DIB will only be
partially implemented or not at all and perhaps accounts for the fact that DIB has yet to
be widely implemented despite its existing implementation guideline and mechanisms.
The chapter now turns to considering the DIB implementation mechanism through the
analysis of the two mechanisms, Disability Integrated RANHAM and the Musrenbang
(MoNDP 2015).

5.4.1. Disability integrated National Action Plan of Human Rights (RANHAM)

The RANHAM is a policy document that contains targets, strategies and foci of the
prioritised programs and activities of the National Action Plan of Human Rights in
Indonesia. This document is used as a reference by ministries, agencies and local
governments in their programs to protect and promote human rights in Indonesia
(MoNDP 2015). RANHAM 2015-2019 includes twenty four disability related actions,
making disability one of its major thematic actions (The UNCRPD Report of Indonesia
2017). DIB was first mentioned as a policy initiative as one of these twenty four disability
related actions.

As previously indicated, disability integrated RANHAM 2015-2019 was stipulated by the

Presidential Regulation Number 75 of 2015. It requires that ministries/agencies and local
governments prepare actions16 on Human Rights every year. This includes actions on

16
Actions are programs or activities that have comprehensive and measurable objectives, and which can
be monitored through an online monitoring system (MoNDP 2015).

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disability rights mainstreaming and in this way, RANHAM 2015-2019 should have
become an avenue for implementing DIB. However, the implementation of disability
rights mainstreaming still needs to be ratified through a Presidential Instruction (INPRES)
before it becomes law and, as discussed above, without this the problem of commitment
of individual government agencies remains (Rosyidi and Naipospo 2016, Indonesia
Disability Convention Team 2017, Joint UPR Report 2017).

This lack of regulatory support is one of the challenges undermining the capacity of
RANHAM 2015-2019 to ensure disability rights mainstreaming across ministries and
local governments. The UNCRPD Shadow Report, prepared by the Indonesian Disability
Convention Team, highlights the impact of this issue:

The 2004-2013 National Action Plan (RAN) on disability was incorporated into the
National Action Plan on Human Rights (RANHAM) as an attempt to increase
awareness of issues of human rights towards an inclusive society. However, it is still
weak in terms of implementation (Indonesia Disability Convention Team 2017: 15).

But the difficulties in implementing RANHAM 2015-2019 can also be partly explained by
the lack of ‘an independent body to monitor and supervise its implementation’ (Joint
UPR Report 2017: 1). This means that it is still up to each government to implement
RANHAM 2015-2019 or not. Therefore, the implementation of DIB by the Indonesian
government via the disability integrated RANHAM 2015-2019 appears to be limited by
the current weak implementation mechanism of the RANHAM itself. This is one of the
key challenges in DIB implementation facing the Indonesian government.

5.4.2. Bottom-up development planning: Musrenbang

Local development processes in Indonesia require the community to participate actively

through a mechanism of community consultations on development called Musyawarah
Rencana Pembangunan (multi-stakeholder consultation forum for development
planning) or the Musrenbang colloquially. The DIB Implementation Guideline states that
active involvement of people with disability in the budgetary and planning processes is
facilitated through the Musrenbang and that people with disability be included in all the
consultation meetings (MoNDP 2015, Purba 2011). This section introduces the purpose

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and functioning of Musrenbang in Indonesian development planning. It also argues that,
in practice, Musrenbang is complex, often not fully implemented and difficult for many
marginalised groups to engage in. This has a significant impact on the implementation
of DIB, particularly the principles related to inclusion and participation of people with
disability. This issue is taken up in greater detail in Chapter Seven, which will explore the
experiences of people with disability in Musrenbang.

The emergence of Musrenbang in Indonesia was closely associated with the adoption of
a decentralised system by the Indonesian government in 1999 (LGSP 2007, Sopanah
2012, Sutiyo and Maharjan 2017). As a measure to implement fiscal decentralisation,
the Indonesian government encouraged the participation of villagers in the budgetary
planning of government programs by establishing Musrenbang through Law No.25 of
2004 on the National Development Planning System (Sutiyo and Maharjan 2017). The
mechanism is intended as a process for negotiating, reconciling and harmonising
differences between government and non-governmental stakeholders, including
citizens, in order to reach a collective consensus on development priorities and budgets
(LGSP 2007).

In practice, Musrenbang is a systematic series of meetings at village, sub-district, district,

provincial and national levels across Indonesia, whose purpose is to develop a hierarchy
of development priorities and synchronise bottom-up and top-down planning (LGSP
2007, Sutiyo and Maharjan 2017). This process can be described as follows: 1) At the
village level, the Musrenbang aims to agree on program priorities of the local
government departments or Satuan Kerja Perangkat Daerah (SKPD) that will be funded
from the local government annual budget and village allocation funds; 2) At the
Kecamatan or sub-district level, proposals from the village level are sorted, decided on
and agreed for discussion at the SKPD forum; 3) At the SKPD forum, the development
program priorities agreed in the sub-district level Musrenbang are discussed by
incorporating inputs from the local government departments (SKPD) and the District
government as well as by integrating the development priorities at the provincial and
national levels (in this forum, public involvement is restricted because invitations at this
level are usually only issued to government officials from the government departments);
4) At the district level, the draft of the final annual local government work plan and

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budget is discussed; this District level Musrenbang is organised by the District Planning
Agency (Bappeda) where membership of the organising committee is dominated by
bureaucrats, with community participation limited and managed via a delegate system;
and 5) the annual workplan from each district is synchronised at the Provincial level
Musrenbang and eventually informs the Musrenbang at national level (LGSP 2007,
Sopanah 2012).

In terms of this mechanism’s time-schedule, village level development budgets are

formulated in Musrenbang meetings from January to February, and then feed into Sub-
district budgets in February to March, and into the District budgets in March to April.
The output of Musrenbang is the Rencana Kerja Pemerintah Daerah (RKPD) or the
annual local government work plan and budget which is generated in May (LGSP 2007,
Sopanah 2012).

It is important to note that participatory development planning in Indonesia is a complex

and lengthy process and that there are contested views about the balance between
community empowerment and output-based planning (Purba 2011). While the
Musrenbang mechanism was formally recognised in 1999, its actual implementation in
practice since that time appears to depart significantly from the intended framework. It
is generally seen as only part of the required process to fulfil the obligations of the local
governments without real active community participation (Sopanah 2012). And
significantly for DIB, some people, particularly those from marginalised groups, still find
it difficult to have their voices heard and to participate directly and actively (Purba
2011).

This also raises the question as to the effectiveness of this mechanism to ensure
participation of people with disability in the budgetary planning processes through DIB.
While people with disability are not prohibited from participating in the Musrenbang
processes, the extent to which there are efforts directed toward supporting their
inclusion and participation are less obvious. Questions around the effectiveness of the
Musrenbang to ensure participation of people with disability in development budgeting
processes will be taken up through an exploration of the views of people with disability
about their experience participating in the Musrenbang addressed in Chapter Six.

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5.5. Conclusion

This chapter has analysed the emergence of DIB, how it is defined and operates, as well
as its current implementation mechanisms in Indonesia. DIB is a significant step on
behalf of the Indonesian government towards mainstreaming disability rights across
their development policies and programs. In developing DIB, the Indonesian
government has responded to internal factors, such as its own past failures to
mainstream disability rights, and external factors, such as Indonesia’s ratification of the
UNCRPD and SGDs. These external factors in particular, have situated DIB as an
important part of the so-called paradigm shift from a social welfare focus to a rights-
based approach. However, the extent to which this paradigm shift leads to concrete
changes is hindered by several limitations. While inclusion and participation of people
with disability are identified as central underpinning principles of DIB, they are not
reflected in the instruments to be used to operationalise its implementation.

Questions remain about the effectiveness of current implementation mechanisms of

DIB to achieve that goal. Particular challenges relate to the lack of regulation to
implement DIB, and weaknesses in the current DIB implementation mechanisms,
including the ineffective regulatory structure of RANHAM 2015-2019 and lack of clarity
about how people with disabilities are able to participate in the Musrenbang
development planning processes. Together, these factors make it more difficult for the
Indonesian government to realise the full potential of DIB and to operationalise the
inclusion and active involvement of persons with disability in its entire implementation
processes. These findings identify some of the challenges in achieving DIB. The next
chapter turns to an in-depth exploration of the paradigmatic and implementation issues
that appear to contribute to these challenges in achieving DIB.

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 CHAPTER SIX
ACHIEVING DIB IN INDONESIA:
PARADIGMATIC AND IMPLEMENTATION ISSUES

The previous chapter suggests that despite having taken a significant step towards
mainstreaming disability rights, the actual mechanisms in the policy, the regulatory
framework and the resources available are not sufficient for implementation of DIB. This
chapter aims to identify and elaborate on some of the issues in achieving DIB in
Indonesia and in creating the conditions for inclusion and full participation of disabled
people in state-led development planning. The findings reported here and in the
following two chapters of findings draw on empirical data from semi-structured
interviews with government officials and disability activists, focus groups involving
grassroots people with disability, as well as participant observations from eight
workshops and meetings organised by DPOs and the local government. The research
findings in this Chapter identify several key challenges that have prevented the
achievement of DIB, characterised here as a) paradigmatic issues and b) implementation
issues.

The first section discusses the paradigmatic issues inherent in the dominant social
welfare approach, perpetuated by a persisting deficiency model, in the context of both
disability and development. The second section outlines several factors that may help
explain the limitations related to DIB’s implementation identified in the previous
chapter, which included a lack of regulatory structures to ensure accountability, a weak
implementation mechanism and concerns about the capacity of the Musrenbang to
engage disabled people. These factors include the low priority given to disability, limited
resources and the leading role of the Ministry of Social Affairs. It also argues that the
introduction of new regulation and policy aimed at the promotion of disability rights and
inclusion have not necessarily translated to comprehensive implementation of DIB on
the ground. In particular, this chapter argues that even though there has been a
paradigm shift in legal language, and one policy breakthrough, there has not been a

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change in the discourse that guides thinking and practice. Without a more
comprehensive paradigm shift to a human rights-based approach and effective
mechanisms to achieve this change, the chapter highlights the potentially limited impact
of DIB on disability rights and inclusion.

6.1. Paradigmatic issues: Welfare to rights?

In its guideline on DIB implementation, the Indonesian government identifies the need
for a ‘paradigm shift in approaching disability from a charity focus (only social welfare)
to a rights-based approach in all government programs’ (MoNDP 2015:45). A paradigm
shift implies a significant or radical change in thinking and practice. However, the views
of the informants in this study suggest that despite this proposed shift in approach,
social welfare remains the key paradigm informing approaches to disability. This
continuing dominance of the social welfare approach in the context of disability and
development in Indonesia, is further underpinned by a persisting deficiency model,
which conceptualises disability as corporeal or cognitive deficits located within the
individual (Jackson 2018, Haegele and Hodge 2016). This section shows how the rights-
based thinking about disability demanded by DIB remains in conflict with entrenched
ideas that circulate in the context of State-led development.

6.1.1. Persisting deficiency model of disability

Chapter Three discussed how the terminology used to refer to disability has changed
from cacat to disabilitas in disability rights-based policies and legislation, such as Law
No.19 of 2011 on the ratification the UNCRPD and Law No.8 of 2016 on Persons with
Disability. This change in language was further explored in Chapter Five, which outlined
how the Indonesian government has adopted the language of rights as a first step
towards the rights-based and inclusive approach promoted by DIB, the UNCRPD
ratification law and the new national disability law. These are important and overdue

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steps, however this change of language in formal laws and policies appears so far to
have been insufficient to generate a similar change in thinking and practice.

The empirical data suggest that the change in thinking and practice required by a
disability rights-based policy, such as DIB, is challenging for individuals who have
traditionally worked within entrenched medical or deficiency model ideas about
disability. All thirteen government officials interviewed for this study used either the
term penyandang disabilitas or difabel during the interviews. While this suggests a
significant uptake in rights-based language to describe disability in the eight years since
the introduction of penyandang disabilitas, most of these government officials still used
deficiency models to underpin their views of disability. Several highlighted the
importance of rehabilitation for disabled people to prepare them to participate in
society. One official intimated that participation for people with disability was itself
conditional on their ‘rehabilitation’ and ‘treatment’ and that MoSA had a central role in
this process:

Well our friends, penyandang disabilitas, still need to be rehabilitated and treated
by the Department of Social Affairs before they can get along in and diterima [be
accepted] by society. Therefore, MoSA or Departments of Social Affairs at the
regions are the only government agencies that have a lot of programs for disabled
people to ensure that these people can hidup seperti masyarakat lain [live like
others] (CGOJ3).

The use of the phrases diterima oleh masyarakat (accepted by society) and hidup seperti
masyarakat lain (live like others) suggest that ableist standards, as discussed in Chapter
Three, are still applied by at least some individuals among government policy elites.
Another government informant further reinforced the bifurcation of rehabilitation and
active participation by people with disability in government budgeting processes as
required for DIB implementation:

I’m afraid that it’s unlikely for difabel people, particularly those at the grassroots
level, to engage in the government budgeting processes. We still need to help them
with services important for their rehabilitation. (LGOY1).

Although some people with disability may need these services, this statement indicates
low expectations of what people with disability more generally may achieve

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independently. The experiences of people with disability in this study also demonstrate
their concern with the retention of deficiency models in the understanding of disability.
For example, a visually impaired university student expressed discontent when he
described how the deficiency model continues to influence the way disability is
understood by people in the government, and the way in which disabled people are
consistently viewed as incapable:

People in the government always see us being unable to do anything and therefore
we must be helped all the time. How can difabel people like us get involved directly
in determining the budget if they still think that we are incapable (GPWD3).

Another disabled person, who is physically impaired, encountered marginalisation from

her village development processes, couched in benevolence and paternalism. She spoke
about her experiences interacting with the Head of her Dusun (hamlet) who viewed her
participation in the consultation meetings of development planning at the hamlet level
as essentially unnecessary. She said, ‘When I expressed my intention to Pak Kadus [Head
of Dusun] to participate in the Musrenbangdus [village level Musrenbangin], he said that
it was not really necessary for me to participate because they knew what’s best for me
and I was asked just to accept the decision made’ (GPWD13). A person with a hearing
impairment also shared a similar experience when he visited the Dinas Sosial
(Department of Social Affairs) of the district where he lives, saying ‘I felt discouraged
when Bapak Kasi Resos [Head of Social Rehabilitation Division] turned down my
proposal for involving deaf community in evaluating the quality of hearing aids that they
distributed for free for the reason that they are experienced in determining the special
needs of disabled people under their rehabilitation programs’ (GPWD20).

Viewing disabled people as incapable or uninformed about their own needs can be seen
as a form of paternalism, which is a form of discrimination (Patterson 2003). Birks (2018)
argues that paternalism is an act intended for the benefit of a recipient, but is motivated
by a negative judgment about that recipient’s abilities. While the motivation of the Head
of Dusun cannot be known, what is clear is that underlying paternalism informs his pre-
emptive judgements about the possibility for GPWD13’s participation. Irrespective of
any presumed positive benefit of paternalistic views or acts, paternalism is wrong when

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it interferes with a person’s autonomy in decision making (Birks 2018). Despite what
may be inaccessibility problems, the Head of Dusun’s overriding of GPWD13’s decision
to participate undermines her rights as a citizen of the Dusun. The official at a district
level Dinas Sosial in the story of GPWD20 obviously showed his paternalistic view
towards disabled people in which this official saw and treated people with disability as
‘patients’ or patrons of the government rehabilitation programs. Such paternalistic
views are in stark contrast to the call for a paradigm shift to the rights-based approach
to disability. As will be shown in Chapter Seven, people with disability also recognise this
problem, as indicated in their prioritisation of awareness raising programs to change
such deficiency-laden discourse.

Other interviewed government officials accounted for disability as a problem resulting

from impairments that prevent disabled people from participating socially and
economically in society. As discussed in later in this chapter (See Section 6.2.2.), this
account of disability constructs people with disability uni-dimensionally as people with
‘social welfare’ problems, meaning people who need to be rehabilitated so that they can
function as other citizens do. Several ascribed impairments as the main factor for
inability to access employment, saying for example, ‘mental impairments mean that
penyandang disabilitas cannot get a job or compete with normal job seekers’ (LGOY3)
and ‘problems from their impairments make the difabel unable to meet the standards
from mainstream employers’ (CGOJ3). Others emphasised that impairments cause
economic and welfare problems faced by disabled people, for example, that
‘impairments force penyandang disabilitas to stay at home in isolation from normal
people and live a difficult life economically that creates welfare problems’ (LGOY1).
Many also used terms that equate disability with limitation, such as ‘ketidaksempurnaan
(imperfect physical or mental condition),’ ‘keterbatasan’ (physical and mental
limitations) and ‘kondisi tidak seperti orang normal (a condition unlike normal people).

The views expressed by government officials interviewed in this study focus variously on
the need for rehabilitation, low expectations, limitations, lack of capacity, and
impairments as the cause of marginalisation. Notwithstanding the adoption of the
paradigm of rights and the change of terminology at the level of policies and legal
framework, the views and experiences of the participants in this study suggest that

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frameworks such as DIB, the UNCRPD ratification law and the national disability law have
yet to be able to generate similar change in thinking and practice in relation to people
with disability. Ableist, paternalistic and deficiency models remain prevalent in the
everyday discourse about disability shared in the views of the government officials
above. Full participation of people with disability will continue to be undermined while
such paternalistic and deficit-informed views persist.

6.1.2. Deficiency models in disability inclusive development

As described in Chapter Five, including disability in the development agenda is part of

Indonesia’s response to the SDGs. However, until now, disability inclusive development
in Indonesia has been limited to welfare approaches such as poverty reduction, which
does not appear to align with the way inclusion is presented through DIB’s underpinning
principles of ‘involving people with disability to voice their experience, aspiration, needs
and issues in all stages of development programs’ (MoNDP 2015: 37). This issue of which
approach the Indonesian government takes to inclusive development is complicated by
the contested meanings of inclusion and how these are translated by Indonesian
government officials in this study. This section argues that the Indonesian government
runs the risk of relegating people with disability to being mere recipients of development
programs and misses the opportunity for a more expansive approach to inclusive
development that would be more in line with the principles of DIB. Drawing on the
experiences of people with disability, this study further highlights that the poverty
reduction programs that people with disability are included in are themselves based on
a deficiency model and do not engage people with disability as actors or doers in all
phases from formulation to evaluation.

This contradiction in the way that disability-inclusive development is applied in

Indonesia stems in part from the fact that inclusion itself has different meanings in
development and disability studies literature. Social inclusion in the disability literature
emerged as a response to segregating measures for people with disability, such as
residential institutions and special schools, and was driven by organisations of people

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with disability across the world to see disability as a human rights issue (Oliver and
Barnes 2010, Rohwerder 2015). Rimmerman (2013) found that the meaning of social
inclusion in disability studies further varies to include the acceptance of people as
individuals beyond their disability; the involvement of people with disability in
recreational and social activities; having personal relationships with family and friends;
and having employment as well as formal and informal support. In the Indonesian
disability context, social inclusion is generally associated with the removal of physical
barriers faced by people with disability in educational and community settings
(Adioetomo et al. 2014), a more limited concept of inclusion than appears in most
disability literature from the global North.

The term inclusive development emerged when development institutions such as the
World Bank acknowledged that some people were excluded from the benefits of
economic growth and, therefore, development had to be framed to ensure that all
people, particularly the poor, could benefit (Gupta et al. 2015, Pouw and Gupta 2017,
Ra’is 2017). Inclusive development is defined in many ways with a focus on the
achievement of equity and participation as citizens (Hickey 2013). Pouw and Gupta
(2017) argue that inclusive development is about social, environmental and relational
inclusiveness and should not be interpreted as only helping the poor, but it is actually
about empowering the poor through rights, equal opportunities and redistributive
justice. Gupta et al. (2015) view inclusive development as a lens to critically question
and examine how inequality in society can be reduced and how the marginalised can be
empowered. Thus, inclusive development is based on creating conditions that enable
the disadvantaged to take part in and benefit from economic growth. Inclusive
development is a strategy to achieve equity and empowerment, and poverty reduction
is only one of its several tools (Gupta et al. 2015).

Inclusive development in the Indonesian context aims to achieve increased participation

of the poor in economic development and decreased poverty rates and includes three
strategic objectives: pro-growth, pro-job and pro-poor (Tambunan 2012). There are two
different approaches used by the Indonesian government in implementing inclusive
development. First, empowerment approaches that aim to change the conditions that

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produce poverty, mostly through building the capacities of the poor such as the PNPM17
Peduli program (the National Program for Community Empowerment). Second, welfare
approaches that aim to help the poor to meet their basic needs in the short term such
as BLSM (Temporary Cash Assistance), an unconditional cash transfer program to
supplement the consumption of poor households in the face of price volatility, and PKH
(Family Hope Program), a conditional cash transfer for social assistance. As briefly
addressed in Chapter two (see footnote on page 41), the relationship of disability and
development in poverty refers to the multidimensional understanding of poverty in
human development. Tambunan (2012) explains Indonesia’s RPJMN 2004-2009 and
2009-2014 focuses on economic development that makes poverty a key issue in
inclusive development. Therefore, inclusive economic development ‘emphasises that
economic opportunities created by economic growth are available to all, particularly to
the poor, to the maximum extent possible’ (Tambunan 2012:230). In this way the
Indonesian approach to inclusive development is also narrower than the way inclusive
development is understood in development literature from the global North, because it
focuses on efforts to alleviate poverty and to ensure the poor benefit from economic
growth.

A concept of inclusive development that is geared towards poverty reduction is also

reflected in the empirical findings of this study. However, interviews with Indonesian
senior national government officials also reveal different understandings about the
relationship between inclusive development and poverty reduction. For example, a
senior official at the Ministry of Finance (MoF) explained that inclusive economic growth
is marked by decline in poverty rates:

17
Peduli, meaning care, is a community empowerment program under the coordination of the
Indonesian Coordinating Ministry of Human Development and Culture in partnership with Civil Society
Organisations to support the marginalised groups such as vulnerable children and youths, isolated
indigenous people, religious minorities, victims of human rights abuses, people with disabilities and
transgendered community. In the first phase, this program was called the PNPM Peduli and facilitated
from 2011 to 2014 by the PNPM Support Facility (PSF) of the World Bank. In March 2014, The Asia
Foundation was appointed as the Managing Partner in the second phase of the Peduli Program with the
funding support from DFAT-Australian Aid. The second phase of the Peduli Program focuses on social
and economic inclusion in Indonesian development by improving access to basic human rights services
and social acceptance of the marginalised groups. See http://programpeduli.org/tentang/ for details.

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 For the last couple of years, the theme emerging from the Government Work Plan
to be considered in the State Budget preparation is inclusive economic growth. It
can be said that growth is inclusive if followed by decreasing poverty rate (CGOJ5).

Another senior official at the Indonesian Ministry of National Development Planning

(MoNDP) reduced the meaning of inclusion in the Indonesian context to including poor
people:

Inclusion in our development context is frequently associated with poverty

reduction as in inclusive economic growth in which inclusive means including the
poor. If a program includes poor people, then the program can be said inclusive
(CGOJ4).

While the views of these senior government officials differ, both closely relate inclusive
development with poverty alleviation and neither include people with disability as active
participants in the development process. This issue of the contested meaning of
inclusion, will be taken up again in Chapter Seven’s analysis of how people with disability
in this study understand their inclusion in development within the context of DIB
implementation.

When it comes to including people with disability in the development agenda, the
government has focused primarily on welfare approaches. This can be clearly seen in
the Indonesian National Medium-Term Development Plan (RPJMN 2015-2019) to
achieve inclusive development and poverty reduction. This frames disability
predominantly within the broad themes of social protection and social welfare to
achieve poverty reduction in the national development agenda. For example, within one
of the six strategic objectives of the RPJMN 2015-2019, poor people with disability are
included as part of the group masyarakat kurang mampu (less capable communities) as
eligible for comprehensive social protection programs and improvement of basic
services. Notwithstanding the desirability of development programs that seek to
empower disabled citizens, state welfare remains critical to the ability of them and their
families to meet their basic needs. Unfortunately, these too have been designed in ways
that reduce the agency of people with disability by failing to consult with them in the
design of these programs and, as a result, not all deserving disabled people can access
them. This happens because a disability lens was not incorporated in the design of poverty

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criteria set out by the government. The remainder of this section explores the experiences
of people with disability who have been excluded from participating in the design of
poverty reduction programs. It demonstrates that poverty reduction programs that do
not include people with disability as active participants also fall short in their capacity to
meet the needs of people with disability.

Several disabled informants spoke about barriers to accessing poverty reduction

programs due to the absence of consultation with members of the disability community
at the time of the programs’ design. Lack of consultation resulted, for instance, in the
undifferentiated application of policy, where the government-determined criteria for
living in poverty are the same for all recipients, able-bodied and disabled, without taking
into account the lived experience of people with disability. For example, a prominent
disability activist in Indonesia critiqued the ways that disability has been included in
poverty reduction programs:

From my investigation at TPN2K about cash conditional transfer programs that have
included persons with disability, I learned that such programs only target poor
people. Living with disability doesn’t belong to the criteria determined by the
government. People with disability are included as recipients, but it’s more because
they happen to be poor. As a result, many deserving people with disability cannot
access these programs (DAY7).

The observation above suggests that the inclusion of disability into government poverty
programs cannot reach all disabled people who need access to these programs. Some
disabled people are excluded because they do not meet the poverty criteria. The reason
for this is that the poverty criteria set out in the government policies did not include a
disability lens or consideration of disability as a distinct factor in leading to poverty. The
poverty criteria mentioned by the disabled informants above were created by TPN2K
(National Team for the Acceleration of Poverty Reduction). TPN2K is the institution
established by the Government of Indonesia at the central level to coordinate the
acceleration of poverty alleviation across sectors and stakeholders. This institution
developed fourteen poverty criteria for the poor to be able to access government social
protection and assistance programs largely in the form of Conditional Cash Transfers.
The fourteen poverty criteria do not consider the additional costs of living with disability
that may lead to poverty. The level of income is one example for those criteria that do

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not include consideration of disability. A person is considered to live in poverty in
Indonesia if his/her monthly earning or income does not exceed IDR 600,000 or AUD 60
(Anon 2016). Any person (including disabled people) whose monthly income is over this
specified amount is ineligible to access government social protection and assistance
programs.

In relation to income, poverty and disability, Sen (2004:2) argues that ‘income is not
something we value for its own sake.’ To do the same things as able-bodied people, a
disabled person may need more income because disabled people experience what Sen
terms ‘conversion handicaps’, or the disadvantage that people with disability experience
in converting money into ‘good living’ (Sen 2004:5). Physically disabled persons, for
example, may need more income to purchase assistive devices such as wheelchairs or
crutches, or to pay someone to assist them moving around. Furthermore, in Sen’s view
(Sen 2004)(Sen 2004)(Sen 2004)(Sen 2004)(Sen 2004)(Sen 2004)(Sen 2004)(Sen 2004),
an income-based view of poverty has limitations particularly when it is applied to the
situation of people living with disability, ‘With the same level of income [as an able-
bodied person], a disabled person may be able to do far fewer things, and may be
seriously deprived’ (Sen 2004:2).

Relating Sen’s concepts to the context of Indonesian government poverty criteria, a

disabled person or a household with a disabled member that earns higher than the amount
of IDR 600,000 is not necessarily better off than an able-bodied person who earns less than
that amount. However, the poverty criteria do not incorporate the concept of cost of
disability and, as a result, many people with disability cannot access the needed social
protection programs.

Some disabled informants in this study criticised the poverty criteria, claiming that it was
unfair to them. For example, a mother of a child with multiple impairments talked about
the ineligibility of her son to access financial benefits from the government because she
earned slightly higher than the amount specified in the poverty criteria:

My son is not eligible to receive financial assistance from the national government
that I really need only because they see that I have an old car to bring my child to
hospital, and I earn a bit over one million Rupiahs every month. They don’t know
how hard it is to raise my child that costs me a lot for his special needs and medical

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 treatment all his life. Didn’t they talk with disability organisations before deciding
which disabled people are eligible or not? (GPWD12).

GPWD12’s experience is likely to reflect that of many disabled people in Indonesia

where the poverty criteria used to determine access to financial benefits fail to take
account of the lived experience and situation of people with disability. Disabled
informants in this study consistently pointed out the importance of consultations with
the disability community so that programs can be more inclusive of people with
disability. For example, one disability activist observed that more informed disability
inclusion in government poverty reduction programs could have been achieved if it had
been done in consultation with disability community:

The government announced that their poverty reduction programs such as PKH,
Kartu Pintar and many others have included the difabel. Actually, they only include
poor difabel and the criteria for being poor for the difabel are the same criteria the
government used for non-difabel poor people. They called it inclusive, but to me
they are discriminatory because not all difabel people can access the programs.
They didn’t talk with us when deciding such programs. If they did, we would have
recommended amending their current poverty criteria to be disability inclusive, or
making a different set of criteria for the difabel (DAY 8).

Other disabled people also demanded to be actively engaged in the design of poverty
reduction programs, for example, saying ‘they [the government] should have discussed
with us about the eligibility criteria before including poor difabel [as recipients] just like
that’ (DAY3). Others suggested that the local government agency responsible for
program implementation could have involved DPOs in the program delivery as well, for
example, stating ‘DPOs know more about the difabel who really need these programs,
but they [the implementing government agency] never talked to DPOs and engaged
PSM18 [volunteering social workers] instead’ (DAY6). Concomitant to these complaints
are demands that disabled people should be actively involved, which is in line with the
meaning of disability inclusion in DIB principles that promote active engagement of
people with disability and their experience (MoNDP 2015).

18
PSM (Pekerja Sosial Masyarakat) are paid volunteers from village community recruited by MoSA to
reach out people with social welfare problems such as homeless people, street children, beggars and
people with disability and help these people to access various government welfare programs.

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Their demands signal the importance of an approach to disability inclusion that is
broader than the example above taken by the Indonesian government and that
facilitates people with disability to participate in and influence development policy.
Inclusion of disability into poverty reduction programs entails that disabled people are
not seen as mere deficient objects or recipients of the programs, but as active citizens
who can participate from the initial stage of formulation of a program, to the final stages
of evaluation. The exclusionary criteria applied to the program above and the lack of
active engagement of disabled people demonstrates that people with disability are only
included in State-led poverty reduction programs that are still driven by a deficiency
model.

Poor people with disability in Indonesia may still need social welfare programs to reduce
poverty such as PKH, Kartu Pintar, Kartu Indonesia Sehat (cash and non-cash conditional
transfers for social protection, education and health) and others. The national disability
law also guarantees the rights of people with disability to such programs. However, this
does not necessarily mean that the approach to disability in state-led development
should focus only on welfare and poverty reduction programs. Budget priorities
identified by people with disability in this study show a wider range of needs than only
social welfare (as will be discussed in Chapter Seven). In terms of learnings for the
implementation of DIB, disability inclusion will require resource allocation for disability
mainstreaming across all ministries, beyond social protection and social welfare to
achieve poverty reduction, and full participation of disabled people in all government
programs.

6.2. Implementation issues

DIB is a mechanism to mainstream disability across all areas of government. The

objectives of mainstreaming are to ensure that a) marginalised people’s needs and
priorities are not always at the end of the list to get done, and b) that their needs should
be incorporated across every sector of public action. However, the empirical data
gathered in this study shows that disjunctures between principles and regulations on

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paper and real-life practices in implementation processes are a key problem accounting
for the lack of progress in achieving DIB. Written commitments can remain largely
aspirational without the practical mechanisms and strategies to make them realisable in
thinking and practice. This section draws upon the interviews to analyse two issues on
the implementation of DIB: limited resources that result in a low priority for disability in
the development agenda, and the inappropriateness of the leading role of MoSA.

6.2.1. Limited resources

This sub-section addresses the first objective of mainstreaming identified above, that
disability is not yet given priority when developing government budgets. The interview
data shows that the prioritisation of budgets in the face of limited resources account, in
part, for the protracted delays in DIB implementation. While prioritisation is both
necessary and accounted for within the design of DIB, through Musrenbang, the criteria
under which issues are prioritised, and the relative value given to different issues, will
determine whether disability will command the resources required for its
comprehensive mainstreaming in State-led development. For this reason, it is important
to get the participation of people with disability. That is, without participation in decision
making, there will not be inclusive development in the sense that development works
for all.

Some government officials interviewed in this study commented on the issue of limited
resources that forced them to focus their budget allocation only on priority programs
within their ministries or agencies. For example, a senior official at a national ministry in
Jakarta talked about how limited resources led to the postponed implementation of DIB,
saying ‘other ministries beyond MoSA such as the Ministry of Public Works had intended
to implement DIB, but their budgets were barely enough to address their main priority
programs such as building infrastructure in West Papua’ (CGOJ4). Another official at a
provincial agency in Yogyakarta accounted for the difficulties of some local government
agencies to include disability in their programs due to limited local government budgets,
stating ‘except for Dinsos [Department of Social Affairs] that is responsible for disability,

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it would be very hard for other agencies to also address disability in addition to their
priority programs because of anggaran yang terbatas [limited budgets]’ (LGOY2).

Disabled people in this study also identified limited resources as the main reason cited
by the government officials for not being able to realise the demand of disability
community for inclusion in government programs. For example, a person with disability
shared her experience of having an audience with government elites in the City of
Yogyakarta regarding the need for a City Local Regulation on Disability:

Their classic reason is always about budget. They keep saying that they have very
limited budget, or it would be too costly to fully address disability issues. But
apparently, they would prefer things that they think can give them obvious
advantages. For example, road construction that can clearly show that their region
is developed (GPWD10).

GPWD10’s perception that a lack of resources is the government’s justification for

prioritising programs that have more immediate and visible outcomes than disability
inclusion is confirmed by the comments of senior officials at the Ministry of Finance
(MoF). These officials highlighted that program prioritisation is made necessary by
limited resources, and it is done through a budgeting approach that selects programs
based on national development priorities and the strategic outcomes the program will
generate. For instance, an official at the ministry talked about a new approach used by
the Indonesian government in national development planning and budgeting, called the
Money Follow Program that emphasises the importance of prioritisation of issues for
limited resources:

The Money Follow Program requires budget allocation based on national

priorities. The government work plan may have several priorities but given limited
financial resources we have to choose what to prioritise amongst them (CGOJ6).

The Money Follow Program focuses on outcomes-based budget allocation for

government programs and activities that are directly related to national development
priorities (MoNDP 2017). President Jokowi’s Guidelines for Priority Programs (called the
Nawa Cita) are used as the reference point in this outcomes-based approach by national

145
ministries to formulate the national development priorities in Government Work Plan
(RKP). The Nawa Cita’s nine development priorities were translated into the 2015-2019
National Mid-Term Development Plan or the RPJMN (Rencana Pembangunan Jangka
Menengah) introduced in January 2015. These nine development priorities consist of 1)
returning the State to its task of protecting all citizens and providing a safe environment;
2) developing clean, effective, trusted and democratic governance; 3) development of
peripheral areas; 4) reforming law enforcement agencies; 5) improving quality of life; 6)
increasing productivity and competitiveness; 7) promoting economic independence by
developing domestic strategic sectors; 8) overhauling the character of the nation, and;
9) strengthening the spirit of unity in diversity and social reform.

These Nawa Cita priorities are also translated into the 2018 RKP (National Government
Workplan) that includes ten national development priorities: 1) education; 2) health; 3)
housing and settlement; 4) business and tourism development; 5) energy sustainability;
6) food resilience; 7) poverty reduction; 8) infrastructure, connectivity and maritime
affairs; 9) regional development; and 10) politics, law, defence and security. The national
priorities are also supported by mainstreaming programs consisting of mental
revolution, gender equality, climate change and good governance (PresidenRI 2018).
When asked about the position of disability as an issue among those development
priorities, another official at the MoF claimed that it was not yet a priority issue:

The approach [The Money Follow Program] is based on outcomes. The more
strategic the outcomes, the greater the budget to be allocated. In regard to
disability, we are yet to see the strategic outcomes coming out of it (CGOJ5).

This statement is reflective of the persistent social welfare approach to disability by the
Indonesian government. It reveals that disability is still seen as a financial burden that
needs to be addressed through social welfare programs, rather than seeing inclusive
development of people with disability as contributing to economic development.

A further reason for disability having a low priority in budget decisions is the emphasis
on quantitative measurement of outcomes (Prosser 2018). In the case of measuring
disability in development, these measures might include how much money is spent on
issues important to people with disability, compared to other groups. However, one of

146
the weaknesses of this approach is that certain outcomes can be hard to capture and to
measure (Prosser 2018) especially in the absence of reliable comprehensive disability
data in Indonesia (as discussed later in this sub-section). This is particularly the case in
applying an outcomes-based approach in the context of a human rights approach to
disability. Disability inclusion in development and the principles of DIB adopts a rights-
based approach in which people with disability have a right to participate in decision
making in government programs for them (Rohwerder 2015). However, participation of
disabled people in State-led development can be hard to quantify. Participation is an
abstract idea that cannot be reduced to the number of people present in a meeting, as
people with disability may participate to different extents and in non-standard ways
derived from their highly diverse impairment-related needs and supports. The
difficulties in applying outcomes-based measurements to greater participation of
people with disability described above, may contribute to the de-prioritisation of
disability in State-led development.

Furthermore, within the State-led development sector where there are multiple
competing claims, it appears that disability may not be regarded as a sufficiently
pressing issue to warrant inclusion as a priority. This is reflected in the statements of the
senior officials at the MoSA and MoNDP:

This is about skala prioritas [issue prioritisation]. I believe the government has
intentions to allocate budget for disability inclusion, but you know there are other
pressing matters to attend to (CGOJ1).

Skala prioritas dalam pembangunan or issue prioritisation in development can be

defined as a list of State-led priority programs that are compiled based on their levels of
urgency, benefits, costs and the proportion of community that can enjoy them
(Kurniasih 2005). The observations of CGOJ1 suggest that disability is not within the
Skala Prioritas because it is not considered an urgent issue in development:

The government, in this case BPS, has been planning to conduct a specific disaggregated
nationwide data collection for disability in 2015, but this plan was suspended due to
limited budget and the urgent farm censuses that require huge financial resources
(CGOJ4).

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The statement of CGOJ4 also suggests that limited resources and issue prioritisation are
the reasons for the postponement of an important nationwide data collection for
disability. The plan of BPS (The Indonesian Central Bureau of Statistics) to conduct a
national specific and disaggregated data collection for disability was officially announced
in 2014. The BPS already prepared and tested the instrument that proved to be suitable
for the unprecedented specific disability survey to be carried out in 2015 by adopting
the survey method of the Washington Group on Disability Statistics19 (PPDI 2014, Salim
2018). However, the implementation of the plan has been postponed indefinitely due
to limitations in the BPS budget.

Salim (2018) argues that the problem of limited budget faced by the BPS is actually
because the budget for the specific disability survey is allocated, pursuant to the
disability law, to MoSA. The budget allocation for disability data is given to MoSA instead
of the BPS because this ministry is the government organisation assigned by the law to
conduct the national specific disability survey (Article 117 of Law No.8 on Persons with
Disability). However, the MoSA apparently has limited resources and capability to
conduct the nationwide disability survey, a problem that Salim (2018) argues could have
been addressed if the ministry had attempted to collaborate with the BPS. Such a
national disability survey by the BPS could have been the first implementation of DIB for
development programs beyond poverty and social welfare frameworks. The availability
of comprehensive disability data from such a national survey may lead to greater
prioritising of disability because the data can emphasise the urgency, benefits, costs and
the community proportion for disability inclusion in development.

The postponed implementation of the nationwide specific disability survey due to an

urgent farm census as raised by CGOJ1 suggests that disability is yet to be considered as
a priority issue in Indonesian development. The farm census was deemed more urgent
because the farming or agriculture sector is the second top contributor to Indonesian
economic growth after manufacturing (Oktavia et al. 2016). Furthermore, the
agriculture sector feeds over 250 million people in Indonesia and supports the livelihood

19
The Washington Group on Disability Statistics (WG) is a UN city group established under the United
Nations Statistical Commission to address the urgent need for cross-nationally comparable population-
based measures of disability.

148
of millions of Indonesians, and therefore becomes a key component of the
Government’s poverty alleviation strategy (The World Bank 2005, Ruslan 2015). It can
be inferred that the reason for prioritising the farm censuses over disability survey lies
in the greater contribution of the agriculture sector to the economic growth than that
of disability. Prioritising the sectors that impact the majority of population may seem
justifiable and realistic. However, limiting the focus only on issues considered to produce
economic and quantifiable impacts will mean that non-economic but important issues
such as disability will always be left behind. Resource constraints are often the reason
used by countries for legitimatising their inability to fulfil the rights of their citizens
(Katsui 2008a).

Despite a stated commitment to disability rights inclusion in the legal and policy
framework across all sectors of the Indonesian State-led development agenda, resource
limitations and higher prioritisation or Skala Prioritas of other issues for their
contributions to economic growth means that disability is never prioritised highly
enough to get a significant allocation of budget resources. This lack of prioritisation and
associated resourcing holds out little possibility that national ministries will address
disability rights realisation in their programs, let alone through DIB implementation.

6.2.2. Misplaced leadership?

The re-appointment of MoSA as the lead ministry responsible for coordinating disability
rights mainstreaming is also a factor impacting on the implementation of DIB. MoSA is
the lead ministry despite its lack of progress in implementing the RAN Disabilitas or
National Action Plan for Disability (see Chapter Five) and its lack of authority over other
ministries. Interview data with Indonesian government officials reveal that disability
continues to be perceived as a social welfare issue and hence remains the primary
responsibility of MoSA as opposed to a shared responsibility amongst different
ministries and agencies as required by DIB. This sub-section discusses the
implementation issues of DIB that is a result of MoSA being mandated the leadership
and coordinative function.

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This coordinative function is stipulated in Article 129 of Law No.8 of 2016 on Persons
with Disability. Paragraph 4 of the Article highlights that the main responsibilities of
MoSA in relation to its coordinative function include a) synchronising government
programs and policies to ensure the fulfillment of the rights of persons with disability;
b) ensuring effective fulfillment of the rights of persons with disability; c) allocating the
State budget for the fulfillment of the rights of persons with disability; and d)
synchronising the use of the budget to ensure efficient fulfillment of the rights of
persons with disability. The coordinative function of MoSA directly related to DIB
implementation is in the tasks of allocating the budget [mewujudkan anggaran] and
synchronising the use of the budget [menyingkronkan penggunaan anggaran].

While other ministries are required by DIB to mainstream disability in their programs,
they have no budgeting mandate from the law for that purpose. The budgeting mandate
is only given to MoSA. These budget-related tasks of MoSA suggest that, on one hand,
MoSA is the only ministry mandated by the law to allocate the State budget for disability
rights mainstreaming across government programs. On the other hand, this ministry is
also responsible for the oversight of budget use for disability mainstreaming by other
ministries and government branches. However, MoSA is in equal position with other
ministries and has no authority to allocate budgets for the programs of other ministries
nor to determine and supervise how the budgets of other ministries are used for
disability rights mainstreaming. Furthermore, other ministries will have less incentive to
implement DIB because MoSA is the only ministry with budgeting mandate for the
implementation of DIB.

The big tasks mandated by the 2016 disability law to MoSA are in conflict with the
principles of DIB in its 2015 implementation guideline (see Chapter Five). These
principles aim for responsibility sharing across all ministries and the coordinative
function for disability rights mainstreaming is recommended to be placed in the Ministry
of National Development Planning because DIB is a disability mainstreaming policy in
development (MoNDP 2015). Because a national law is higher than regulations and/or
non-binding guidelines such as DIB, the stipulations in the law can easily override the
principles in the guideline.

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One national disability activist explains that the mandate given by the Law No. 8 of 2016
to MoSA as the disability focal point with a new coordinative task is a breach of the law
itself:

Such a mandate is contradictory with three essential matters. First, it [re-

appointment of MoSA as the disability focal point] is in conflict with the aim of the
new disability law; second, it conflicts with other provisions in the law; and third
it goes against the substance of the law itself (DAY1).

One of the key things that differentiates Law No. 8 of 2016 from its predecessor, Law
No. 4 of 1997, is that it requires a much broader group of ministries to be involved in
addressing disability issues (Soekanwo et al. 2015). For activists, as suggested in DAY1’s
statement, it is critical that other ministries are involved, because the kinds of changes
that need to be made, for example, to the education system, the justice sector, to
infrastructure and many others, require the involvement of more than just the MoSA.
Indonesian disability activists have been clear in their expectation that the
implementation of DIB be the responsibility of all ministries. During a DPO workshop on
the Universal Periodical Report of Human Rights 2017, several national and local
disability activists raised their concerns and disappointment at the re-appointment of
MoSA as the focal point ministry for disability. They argued that Law No. 8 of 2016 clearly
stipulates that disability should be the responsibility of all ministries whose work is
relevant to any of the disability rights enshrined in the law (Konas Workshop 2016,
participant observation).20 The activists’ expectations were not necessarily realised in
the final wording of the law, in which the only ministry actually named was the Ministry
of Social Affairs (Dibley and Tsaputra 2019).

The re-appointment of MoSA by Law No. 8 of 2016 as the focal ministry for disability
also risks strengthening the status quo of disability as only a social welfare issue (Solider
2013, Irwanto et al 2011). This is exemplified by MoSA’s 2012 categorisation of people
with disability as one of the twenty six groups of PMKS (Attachment to The Regulation
of Minister of Social Affairs No.8 of 2012). This categorisation indicates that people with
disability are primarily a social welfare issue and that, like other weak and disadvantaged
groups of people, they need to be rehabilitated so that they can function normally in the

20
National DPOs workshop on the Indonesian alternative report for the UPR (Universal Periodical
Report) of Human Rights 2017, held in Bantul Yogyakarta from 15 to 17 August 2016

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society (Suharto 2008). This position can be seen to be in conflict with DIB and Law No.8
of 2016 on Persons with Disability, both of which promote disability as a human rights
issue that requires a multi-sectoral approach.

Furthermore, despite Law No. 8 of 2016 requiring a broader group of ministries to be

involved in addressing disability issues (Soekanwo et al. 2015) there is still an inclination
to concentrate responsibility for disability policy under MoSA. For example, a year after
the enactment of Law No. 8 of 2016, MoSA was the only Ministry that had allocated
budget to implementing regulations for the law (Dibley and Tsaputra 2019). In July 2017,
the Indonesian government announced the decision to have only one government
regulation instead of eighteen subsidiary regulations mandated in Law No. 8 of 2016 in
order for its various parts to be fully implemented (Nursyamsi 2017a). The single
government regulation that covers multisectoral issues of disability would be written
and managed only by MoSA (Nursyamsi 2017a). The government argued that this
decision aligned with President Jokowi’s streamlining of policy, limited the budget of the
other ministries, and suggested that having one implementing regulation would mean
the law could be implemented faster (Nursyamsi 2017b). This decision raised harsh
criticisms from Indonesian disability activists who labelled it a Sapu Jagat regulation (an
Indonesian metaphor to denote one-size-fits-all tool) and was eventually overturned
(Dibley and Tsaputra 2019). They argued that having a single regulation under MoSA to
address disability as a multisectoral issue was inconsistent with the spirit of the
formation of Law No. 8 of 2016 as demanded by activists to include all government
sectors (Nursyamsi 2017b).

The preference by the Indonesian government to formulate a single government

regulation under MoSA to cover different rights of people with disability, suggests that
MoSA is still viewed as the most suitable ministry to be responsible for disability in the
absence of a point of responsibility at a higher level. An observation of a senior
government official at the MoF indicates a perception that MoSA is the right ministry for
dealing with disability because this ministry is traditionally known to have been working
in the disability sector throughout Indonesia’s history (see Chapter Two and Five) and
that other ministries have no experience working in this sector:

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 The law says that MoSA is the responsible ministry. There’s nothing wrong with
that because the work of MoSA is related to social welfare. That’s why the most
appropriate ministry for disability is MoSA. This ministry also has a lot of
experience with disability because they have been doing disability for many years.
Other ministries like us here at MoF have no experience and resources related to
disability (CGOJ7).

Other government officials beyond MoSA who were interviewed in this study also
suggested that the re-appointment of MoSA as the responsible ministry with a
coordinative function is appropriate because of the traditional role of this ministry in
providing services for people with disability. For example, one official stated that ‘MoSA
is the only ministry that has many programs for disabled people and that means the
ministry has experience and knowledge to lead disability mainstreaming’ (CGO6) and
another said ‘It would be challenging for other ministries to start addressing disability, a
sector that is so specific and unfamiliar to them (CGO2).’ The observations of these
government officials indicate a lack of awareness of the relevance and the importance
of a multisectoral approach to addressing disability in the framework of DID and rights-
based approach to disability. While the ministries beyond MoSA may have less
experience in dealing with disability issues, active engagement of people with disability
and DPOs can help these ministries in mainstreaming disability into their programs.
Chapter Eight provides examples of the role of local DPOs in helping local governments
to implement disability inclusion in village development. Chapter Seven also
demonstrates the demand of the disability community to be recognised as a partner to
government in realising disability rights and disability inclusion.

Some disability activists interviewed in this study doubted the capability of MoSA to lead
the mainstreaming of disability rights, evidenced by its past failures and traditional
welfare approach to disability. For example, one activist said that ‘MoSA has failed with
previous RAN Disabilitas, and I am not sure it can do what the law says’ (DAY8) and ‘It
would be repeating previous failures’ (DAY6), and ‘Approaching disability in a charity
model for decades and now to lead human rights approach?’ (DAY4). As discussed in
Chapter Five, one of the internal factors leading to the development of DIB in 2015 was
the limited ability of MoSA to carry out disability rights mainstreaming as evidenced by
the less than successful implementation of the RAN Disabilitas or the National Disability
Action Plans (Irwanto and Thohari 2017). The National Coordination Team led by MoSA

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failed to implement the National Disability Action Plan 2004-2013 that involved several
ministries mainly because of ‘the lack of authority, clear implementation mechanism
and funding’ (Irwanto and Thohari 2017). A recent investigation into the implementation
of Indonesian disability law also demonstrates limited capability of MoSA to implement
the law (Dibley and Tsaputra 2019).

One of the key challenges that disability activists have faced has been to challenge policy
makers’ view of disability as being more than just a welfare issue (Dibley and Tsaputra
2019). The disabled informants in this study emphasised that disability mainstreaming
in development through DIB should be a responsibility shared by the range of different
ministries beyond MoSA. However, the national disability law strengthens the status
quo of MoSA as the leading ministry to coordinate the implementation of the law and
other rights-based disability policies including DIB. Maintaining the leadership of MoSA,
a ministry that has been approaching disability in welfare and charity model throughout
Indonesia’s history, reinforces the idea that disability remains a welfare, rather than a
multisectoral issue. This unchanged leadership in implementation is inconsistent with
the intended paradigm shift foreshadowed in the government’s own rights-based legal
framework and policies such as the UNCRPD ratification law, the national disability law
and DIB. Instead, what is needed is a distributed model of responsibility and
accountability in order to achieve the success of DIB implementation across several
different government ministries and agencies.

6.3. Conclusion

Being a multi-departmental policy, DIB aims for disability inclusion across all
development spheres. This requires a comprehensive paradigm shift from social welfare
to a human rights approach to disability, as well as commitment and shared
responsibility for disability among all government ministries and branches. The key
findings presented in this chapter suggest that a range of paradigmatic and
implementation issues associated with the government’s approach to disability
contribute to challenges in achieving DIB in Indonesia.

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The proposed paradigm shift to rights-based approach for disability in Indonesia is
clearly seen in the change of language in legal and policy frameworks, such as Law No.
8 of 2016 and DIB. However, this appears to have had limited impact in generating
changes in thinking and practice. A deficiency model persists which positions disability
as only a social welfare issue. The State-led development sector also seems unable or
unwilling to acknowledge disability as a priority issue in the national development
agenda. Disability inclusion as it is operationalised in development programs remains
limited to poverty reduction programs which include poor disabled people as recipients.
Limited resources and the low prioritisation of disability in the development agenda also
keep disability marginalised from the status it requires as a multi-sectoral issue in the
State-led development. And finally, the social welfare approach to disability is preserved
structurally through maintaining the leading role of the MoSA.

The issues identified in this chapter suggest that stagnant implementation of DIB rests
on the lack of a comprehensive paradigm shift from social welfare to human rights
approach to disability and the lack reliable mechanisms to ensure disability is a shared
responsibility. The contradictions between government intentions for disability rights
inclusion in all development spheres through DIB (as written in the legal framework and
policy level), and the persistence of deficit views towards people with disability as
reflected amongst government officials are multiple. There is a need for an
accountability mechanism that ensures DIB implementation is a shared responsibility of
all ministries at the national level and government agencies or departments at the local
level. In sum, changing terminology and one policy breakthrough such as DIB is
inadequate to realise disability rights and inclusion without a comprehensive paradigm
shift to human rights-based approach to disability and without practical mechanisms
and strategies to make them realised in thinking and practice. The next chapter argues
that listening to people with disability suggests possible ways to address these problems.

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 CHAPTER SEVEN
DISABILITY INCLUSIVE BUDGETING AND CITIZENSHIP:
“IT’S OUR RIGHTS AND RESPONSIBILITIES TO CONTRIBUTE”

Chapter Six demonstrated the multiple intersecting issues that combine to detrimentally
impact on progress toward DIB’s implementation by the Indonesian government.
Drawing on empirical data from semi-structured interviews and focus groups with
disability activists and grassroots disabled people as well as participant observation, this
chapter aims to explore what DIB as a right-based disability policy means to people with
disability and what they expect or demand of DIB to realise their rights. By including the
voices of people with disability, this chapter seeks to provide some redress to the
evidence presented of their marginalisation to date and reflects the importance of
making disabled people’s voices central in disability-related research (Ashby 2011, Thill
2015). Precedence for this approach can be found in standpoint theory, which states
that people in oppressed situations may ‘know different things, or know things better
than those who are comparatively privileged (socially, politically) by virtue of what they
experience and how they understand their experience’ (Wylie 2003: 26). Tremain (2019)
argues that this should be extended to include the experiences of people with disability
as a marginalised group. This chapter manifests this idea by including the voices of
people with disability, precisely because their lived experience of oppression in living in
an inaccessible society makes them uniquely qualified to advise on government policies
and programs relevant to their own lives.

Including the voices of disabled people in this study further aligns with the principles of
inclusion and participation in DIB, which explicitly seeks to include the perspectives of
people with disability in re-prioritising the development agenda. Listening to the voices
of people with disability in this way suggests possible ways to begin to address the need
for a comprehensive paradigm shift towards a human rights approach in order to fully
realise DIB, as identified in the previous chapter.

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This chapter particularly highlights that disabled people in this study have expectations
of DIB beyond its disability mainstreaming in development goals. Indeed, informants’
reflections suggest that DIB has multiple meanings and potentialities for them. Firstly,
they expect that DIB can help to include disability in all areas of government programs
through appropriate budget allocation. Beyond this, people with disability in this study
indicate a more global expectation or hope that DIB has the potential to enable them to
also fulfil their responsibilities as citizens by positioning them as agents of development,
allowing them to contribute to state-led development.

The first section of the chapter explores disabled people’s views on the needs and
priorities they feel should inform DIB implementation mechanisms. This section explores
disabled people’s expectation for DIB budget allocation to address disability as a multi-
sectoral issue. It also demonstrates the capacity of disabled people to set their own key
priorities that they expect DIB to address. The second section then turns to the
expectations people with disability have about disability inclusion in development
through DIB. This section suggests that beyond the key mechanisms of inclusion and
participation, DIB may also deliver on their broader goals of recognition and legitimacy
as active agents in State-led development.

7.1. Disabled people’s voice on budget priorities

As Chapter Six argues, disability still sits predominantly within the social welfare domain
articulated by MoSA. Such positioning suggests that government budget priorities for
disability are also placed on social welfare related programs. This section explores what
disabled people in this study understand about DIB, and what they perceive as the
budget priorities that DIB implementation should address.

The views expressed in interviews and focus groups of people with disability emphasise
the importance of budget allocation for fulfilling disability rights. When asked how they
see the role of disability inclusion in government budgeting, many participants linked
commitment to DIB to this rights realisation. As one person put it, ‘If our government
had really committed to allocating budgets for the rights of difabel people, I think this

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would have shown that our country was disability inclusive’ (GPWD9). Statements of
other disabled participants make similar points including, ‘DIB is a way to implement
CRPD’ (DAY1), ‘Implementing DIB will ensure funding for our rights realisation’
(GPWD24), ‘Implementing DIB means a concrete step to realise disability rights’ (DAY7).
The reflections of these disabled informants suggest the importance of the
government’s commitment to budget allocation through DIB as a factor for ensuring the
realisation of their rights. Their expectations for ensured availability of resources in DIB
implementation is justified by previous work that examined the implementation of a
human rights-based approach to disability in development and suggested that the
availability of resources and high prioritisation of disability issues are important for
successful disability rights mainstreaming (Katsui and Kumpuvuori 2008, Katsui 2008).

Disabled people in this study criticised the way that the budget is allocated for disability
programs by decision makers in the government and implemented by government
officials. They commented on limitations in the allocation of budget in terms of its
proportions and uses. Some noted the very limited proportions available for disability in
the budgets of government departments. As one said, for example, ‘a handful of
provincial departments have a very small budget allocation, and mostly for such
activities as vocational and rehabilitation trainings’ (DAY4). It is not surprising that
budget allocation for disability is limited to such programs as rehabilitation and social
protection, given that social welfare remains the dominant approach to disability, as
Chapter Five indicated. Other disabled informants critiqued the inappropriate uses of
the limited allocation of funding for disability programs, in which much is lost to
administrative or staff costs. Two of them, for instance, said ‘most of the budget was
used for ATK dan perjalanan Dinas’ (administrative and stationery expenses and
transport for staff and trainers) (DAY6) and ‘we don’t want to see a greater allocation
for non-difabel people such as for staff transport’ (GPWD12). Together these critiques
indicate an acute awareness of the low priority currently given to disability by
government officials.

The participants who made these criticisms noted that they were able to do so because
they understood how government budgets were allocated after attending a series of
trainings delivered by their DPOs in collaboration with national and local CSOs. For

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example, IDEA, a national CSO that focuses on government budget monitoring and
advocacy, has provided a series of trainings for disability activists and grassroots
disabled people in Sleman and Gunung Kidul Districts of Yogyakarta. These two districts
were the areas where most of disabled informants in this study came from. As outlined
in Chapter Four, the sample of this study means that the participants had some
knowledge of rights. Therefore, these views represent those of the most aware people,
rather than of the general population of people with disability in Indonesia. In these
trainings, disabled people learned to read and comprehend real local government
budget documents from the previous years’ programs (IDEA 2016, pers. comm., 18
August). These trainings were instrumental in building the capacity of people with
disability to criticise inappropriate proportion and uses of the government budget for
disability programs. The importance of capacity building and the role of DPOs in helping
people with disability to take their place at the table with government is explored in
detail in Chapter Eight.

The workshops also helped ensure that people with disability were able to contribute
constructively to determining their priority areas that should be addressed through DIB.
The list below is compiled from responses to the answers that disabled people in this
study gave to the question of what the government’s priorities should be for DIB. This
list demonstrates that people with disability are able to meaningfully contribute to the
disability and development policy agenda through priority identification and have a
much broader view of disability mainstreaming; one that employs a twin-track
approach, in which disability mainstreaming and the specific needs of disabled people
are addressed concurrently (Yeo and Moore 2003).

a) The improvement of disability data

The views of some disabled people in this study suggest a need for data disaggregated
by disability as a prerequisite for disability inclusion in development planning and
budgeting in DIB. For instance, they stated, ‘Without disaggregated data, disability
inclusion in development will not happen and DIB should ensure this’ (DAY7) and ‘We
can’t say that government budgeting is disability-inclusive when the government has no

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reliable data as the basis’ (DAY1). The availability of reliable data on disability would help
provide required information for the urgency, benefits and costs for disability inclusion
in development. However, to date, discrepant interpretations on existing diverse
statistics from different ministries have made disability-inclusive development policies
difficult to design and implement (Pramana 2018).

Collecting data door-to-door is a method commonly used in Indonesia for population

and economic censuses (Lubis 2016, Kurniawati 2016) but there are challenges with this
method when collecting data about people with disability. In responding to these
challenges, other disabled people in this study talked about the need for disabled people
or their DPOs to be involved when collecting disability data in this way:

Data collection from the lowest level should be valid and reliable. From data, we
will know if someone is difabel or not and if a difabel person is poor or not. It is
important for data collection to start from the RT in collaboration with DPOs
because the Head of the RT should know their residents very well (GPWD30).

GPWD30 identifies the importance of involving local DPOs in comprehensive disability

data collection from the lowest level of government, the Rukun Tetangga (RT). RTs are
the most localised level of government and serves as the most reachable hub or
‘mediating structure’ for citizens to access information and services from the
government (Simangunsong 2011:180). Local DPOs with funding support from city
governments can assist the Head of the RT through their knowledge and advocacy work
in identifying disabled residents and with raising the awareness of people with disability
and their families about the importance of disability data (PPDI Sleman 2016, pers.
comm. 24 September).

Refusals from families of a disabled person and even from people with disability
themselves were frequently mentioned as one of the main challenges in doing door-to-
door disability data collection (observation, 24 September 2016). Although the Head of
the RT may know if a household has a disabled family member, he or she does not
necessarily have knowledge about disability that is required to conduct disability data
collection sensitively. Families of a disabled person or child often feel uncomfortable
and refuse a visit from a government census worker because they still perceive disability

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as an unwanted family shame and they tend to hide their disabled family member from
outsiders (PPDI Sleman 2016, pers. comm. 24 September).

Two examples described by disabled participants in this study show that involving DPOs
in data collection can help people with disability and their families be more open when
responding to the survey (PPDI Sleman 2016, pers. comm. 24 September). In the first
example, the local DPOs referred to by GPWD30, in partnership with the RTs, were
involved by BPS in actual disability data collection from the level of RT. In the second, a
successful disability data collection partnership between a DPO and a local university,
disabled people themselves led the door-to-door data collection. They faced some
refusals at first, but were eventually welcomed by families of disabled people once they
knew that the surveyors were also disabled (PPDI Sleman 2016, pers. comm. 24
September). In both examples, people being surveyed were more likely to disclose their
circumstances and consequently improve the accuracy of the data being collected.
These examples further suggest that active engagement of disabled people can help the
work of the government.

As discussed briefly in Chapter Five, this demand for comprehensive disability data could
have been realised in 2015 by The Indonesian Central Bureau of Statistics (BPS) through
the implementation of DIB. The lack of a single comprehensive disaggregated data set
on people with disability is considered a major obstacle in fulfilling the rights of persons
with disability in Indonesia (Adioetomo et al. 2014, Kusumastuti et al. 2014, Amannullah
et al. 2016). The views and experiences of people with disability in this study reaffirm
the need for a mechanism like DIB to encourage government agencies like BPS to work
in partnership with people with disability in designing and implementing data collection
programs and help meet this demand for better disability data in Indonesia.

b) Provision of accessibility

Lack of accessibility remains a major barrier to people with disability in Indonesia

(Irwanto et al. 2010, Adioetomo et al. 2014, Kusumastuti et al. 2014, Edwards 2014,
Ernawati and Sugiarti 2015, Cameron and Suarez 2017, Santoso and Apsari 2017). Some

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disabled people in this study also raised a lack of accessibility as the main issue that has
prevented them from participation and using public services. For example, some spoke
about their difficulties in enjoying public facilities due to the lack of access, saying, ‘I
want to use public transport but tidak akses’ [not accessible] (GPWD28), and ‘it’s so hard
to go to the mosque [because] so of many hindrances and stairs’ (GPWD24).

Disabled people expect that DIB implementation would be able to provide solutions to
at least some access issues. For example, they commented on the government’s heavy
investment on infrastructure development as a missed opportunity to address
accessibility for disabled people through DIB implementation: ‘The current government
spends so much money on infrastructure, and if DIB was implemented, accessibility for
difabel people shouldn’t have been forgotten in their infrastructure projects’ (GPWD11),
and ‘Accessibility that is very important to participation of people with disability could
have been provided on a massive scale if the government had implemented DIB in their
nation-wide infrastructure projects’ (DAJ2). For example, in Indonesia’s most recent
mass public transport project, MRT Jakarta, disability activist group, Jakarta Barrier Free
Tourism (JBFT), reported that while elevators were provided to access the train
platforms, a wide gap between the platform and the train made it impossible for people
in wheelchairs and blind people to board the train without assistance (Lova 2019). An
infrastructure project to build Athletes Dormitories in Jakarta for the 2018 Asian Games,
was also criticised by Jakarta disability activist Nuvitasari (2018) for the lack of
accessibility for wheelchair users at the athletes’ dormitories.

As reflected in the existing literature on disability in Indonesia (Irwanto et al. 2010,

Adioetomo et al. 2014, Irwanto and Thohari 2017, Cameron and Suarez 2017) and the
reflections of these disabled people, the provision of accessibility, as enshrined in
Indonesia’s disability law No.8 of 2016, is essential to ensure that disabled people can
participate in society and enjoy public facilities and services like other citizens. Providing
accessibility for people with disability is therefore an urgent issue that budget allocation
in DIB implementation needs to address.

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c) Empowering economic programs

Lack of accessibility also affects access to employment particularly in the formal sector
and hinders the economic welfare of people with disability (Halimatussadiah et al.
2015). Several disabled informants in this study stressed that the budget allocation in
DIB also needs to address programs that can result in economic empowerment for
people with disability. For example, some informants criticised the government’s
Temporary Welfare Programs under MoSA and raised their expectations that DIB can
generate programs from other ministries that may empower them economically. They
stated, for instance, ‘By implementing DIB, I hope other ministries can allocate budget
for productive programs that can empower difabel people rather than programs that
only give away cash like Dinas Sosial [Department of Social Affairs]’ (GPWD13) and ‘I
greatly hope that [through DIB] other ministries’ budget allocation such as the Ministry
of Cooperatives and SMEs can also strengthen the economic welfare of difabel people
in the form of financial assistance or equipment to start businesses at home so that we
can be mandiri [independent]’ (GPWD17). As discussed in Chapter Five, DIB as a
disability mainstreaming mechanism aims to address disability as a multi-sectoral issue
in State-led development. The expectations of disabled people that other relevant
ministries will have empowering economic programs for disabled people are thus in line
with the aim of DIB.

The concept of inclusive development arose out of recognition that economic growth
does not necessarily reduce poverty, and in many cases may exacerbate it. Development
that is inclusive seeks to address structural inequalities and ensure that all people can
benefit from economic growth (Gupta et al. 2015, Ra’is 2017). Although inclusive
development in the economic sense would include disabled people having access to
opportunities in the mainstream employment, disabled people’s current expectations
for DIB are that it would enable access to entrepreneurship opportunities, such as home
industry and small enterprises. However, this can be seen to be a result of the barriers
they face. A disabled informant, for example, said ‘I chose to start a small business from
home because I don’t need to worry about inaccessible public transport and my low
level of education’ (GPWD6). Others noted their preference for employment in the
informal sector because they felt discouraged from participating in the labour market,

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citing reasons such as ‘the lack of skills required for [formal sector] jobs’ (GPWD1), ‘the
lack of accessibility at the work place’ (GPWD3),and ‘feeling afraid that co-workers will
look down upon me’ (GPWD25). In this context, home-based work or enterpreneurship
is a better option for at least some disabled people than the formal sector.

Nevertheless, people with disability should be provided the opportunity to join formal
sector employment by addressing all barriers to increase inclusivity. Greater access of
disabled people to informal sector opportunities remains important because the
informal sector has been growing steadily in Indonesia and about 60 percent of
Indonesia’s economy relies on this sector (Waskito 2017). Entrepreneurship has
previously been shown to be a popular alternative to formal employment for people
with disability in Indonesia. There are many success stories of Indonesian people with
disability as home-based entrepreneurs (difabelpreneurs) who provide financial
independence and employment opportunities for other disabled people living in their
neighbourhood (Lisnawati 2016, Amr 2016, Bisnisukm 2018).

d) Programs to raise awareness about disability rights

People with disability in this study identified the importance of raising awareness about
disability rights to ensure the implementation of DIB as a rights-based mechanism. For
example, a disabled informant spoke about the significance of raising awareness among
government officials saying ‘it's great for the disability community that we already have
a new rights-based disability law, but it means nothing if people who are going to
implement the law and policies [the government officials] are not aware at all of
disability rights’ (DAY4). Awareness raising is, however, equally important for the
general public and even for people with disability themselves. People with disability are
very diverse and many have not had the UNCRPD workshop or training opportunities
from local DPOs because they still live in institutions or are hidden by their families (PPDI
Sleman 2016, pers. comm. 24 September). As suggested in Chapter Six, the required
paradigm shift from welfare to rights-based approach was incomplete because it had
not changed in thinking and practice. In this chapter, people with disability also see this
as a problem that needs to be addressed.

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Others raised the Ministry of Communication and Information’s role in educating society
about a rights approach to disability as a program that could be enabled by DIB. A
disability activist, for instance, said, ‘If DIB was implemented, sosialisasi [socialisation]
and penyuluhan [educational campaigns] about disability rights would be the main
responsibility of the Kominfo [Ministry of Communication and Information] and not that
of MoSA’ (GPWD10). This view also indicates an understanding that DIB implementation
requires treating disability as a multi-sectoral issue with shared responsibility amongst
different ministries in accordance with each of the ministries’ main duties and functions.

e) Programs that can support DPOs

The UNCRPD recognises the important role of DPOs in ensuring the implementation of
the convention by nation states that include awareness raising and monitoring (Cobley
2018). In practice, Indonesian DPOs have played a great role in pushing and advocating
the government in the ratification and implementation of the UNCRPD in Indonesia
(Irwanto and Thohari 2017, Dibley and Tsaputra 2019). Chapter Eight also demonstrates
significant roles of a local DPO in ensuring disability inclusion in local development.
When discussing the effects of DIB implementation on the work of DPOs, disabled
people in this study raised issues about limited resources and capacities of DPOs
(especially grassroots DPOs) to fulfil such an important role, and expected budget
allocation through DIB to assist their work. For example, a disabled informant said, ‘A
budget allocation by government to support the work of our organisation would be a
really great help because our organisation always needs financial support either for daily
operations, or for programs’ (GPWD15).

While a few bigger DPOs are able to access funding from international organisations,
smaller or more local groups have limited access to alternative funds. However, having
access to sources of funding or financial support does not necessarily guarantee that
DPOs can operate effectively. The lack of ability to manage the available resources can
even create more detrimental impact on the work of the organisations. A few small
DPOs in Bantul district, for example, received some one-off financial support from the
Dinas Sosial (Department of Social Affairs) of the District government but they were

165
unable to use the funding appropriately and in the end this produced a conflict among
people in the board of the organisations (PPDI Sleman 2016, pers. comm. 24
September). This case suggests the support that local DPOs need is not limited to
financial assistance but also capacity strengthening such as skills for organisational and
resource management. This issue is further discussed in Chapter Eight.

People with disability are a heterogeneous community with different types of needs
and, as reflected in this study, have diverse priorities relating to their goals for DIB. The
priorities identified above do not necessarily reflect all or even the most important
issues for all Indonesian disabled people. The demands for DIB to enable greater
accessibility, awareness raising and funding for DPOs indicates that specialist services
are a necessary part of disability mainstreaming. Accessibility, for example, requires the
provision of assistive devices, which is a specialist service for people with disability.
Awareness raising campaigns and funding for DPOs similarly require their own specific
budgets, separate to programs already provided. Their demand for DIB to ensure both
specific needs of disabled people and removal of barriers can be understood as a twin-
track approach, which means that mainstreaming and specialist programs need to go
together as part of an overall strategy in achieving DIB’s aim (see section 9.2.2. for
further discussion of the need for a twin-track approach to DIB).

Disabled people’s list of priorities identified above also indicates that disabled people
have the capacity to contribute meaningfully to Indonesian government budgeting and
planning through DIB, as demonstrated by their knowledge that informs the list. They
also give some indication of how disabled people might seek to re-shape the
development agenda if their voices were heard through DIB implementation
mechanisms, such as Musrenbang. They show that disabled people have ambitious
targets for disability mainstreaming, even beyond what is currently mandated through
DIB. Finally, this list of priorities also suggests that people with disability have a nuanced
understanding of what is needed to make a comprehensive paradigm shift to a human
rights approach to disability in development, including government partnerships with
and capacity-building for DPOs, raising awareness about disability rights and reliable
national disability data.

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7.2. Disability Inclusive Budgeting to enable disability citizenship

Beyond budget allocation for fulfilling disability rights discussed in the previous section,
disabled informants in this study also expressed their hope that inclusion and
participation in DIB would help them contribute as warga yang berdaya (capable
citizens) and warga yang baik (valued citizens). For instance, ‘if implemented
comprehensively, DIB can help to show that difabel people are warga yang berdaya
[capable citizens] that do not want to only claim rights, but also fulfil their
responsibilities as warga negara yang baik’ [valued citizens] (DAY1), and ‘Through
inclusion and participation required by DIB, people with disability are no longer seen as
incapable or burdens of society, but they are citizens yang bisa berkontribusi [can
contribute] to the nation’ (DAY7). This section explores how, as Indonesian citizens with
a strong sense of belonging, people with disability involved in this study see DIB as a
pathway to becoming ‘ideal’ citizens participating to build Indonesian society.

Citizenship is contextual and is understood by different people in different ways. The

strong sense of citizenship expressed by some informants in the study reflects their
awareness that disability rights also extend to citizenship-related rights, which includes
the right to contribute to national development. Such awareness relates to the way
citizenship and nation-building is understood in Indonesia. Citizenship in Indonesia is
centred around Pancasila, the state ideology, as the source of civic values and national
identity (Fearnley-Sander and Yulaelawati 2008).21 Valued citizenship is characterised
by having the values required to become the ideal citizen or Manusia Pancasilais or the
Human of Pancasila (Fearnley-Sander and Yulaelawati 2008, Sutiyono 2016). The
Manusia Pancasilais are required to continuously improve themselves to build their
society and nation, and maintain a good vertical relationship with God and horizontal
relationship with their fellow citizens and government (Driyarkara 2006). The statement
of one informant who recognises that disabled people ‘not only want to claim rights, but
also to fulfil their responsibilities as warga negara yang baik’ (DAY1), suggests that their

21
There is critical literature that criticises the concept of Pancasila. For example, Iskandar (2016) questions
the unremittingly conviction about the inviolable nature of Pancasila with the introduction of some legal
efforts to prosecute any sacrileges against it and calls this Pancasila delusion. However, this does not
detract from the importance of this state-ideology for the experience of citizenship by Indonesians
including people with disability.

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understanding of citizenship has developed in the context of the history of citizenship in
Indonesia, which bears its mark on how some citizens today understand citizenship and
what they desire as citizens. Thus, in this context, disabled people want to be seen as
valuable and capable citizens that are able to contribute.

This notion of disability citizenship extends beyond responsibilities to the State, and
influences the identities and lives of Indonesian disabled people themselves. Such
sentiments are evident in disabled people’s comments about the balance of rights and
responsibilities being the foundation of a good life to them. For example, ‘Hidup
sejahtera (a good life) to me is when there is a balance between our rights and
responsibilities as a citizen’ (GPWD11), ‘Hidup sejahtera (a good life) happens when
difabel people also have awareness as citizens to contribute to building inclusivity as
part of the efforts to build the country to realise our disability rights’ (GPWD20) and ‘All
citizens of Indonesia have the same rights and responsibilities to build this country
including difabel’ (GPWD3). A strong sense of citizenship is framed with the expression
keseimbangan antara hak dan kewajiban (a balance between rights and
responsibilities). Citizenship has been defined as the comprehensive relationship
between an individual and the state, influenced by various important factors including
a sense of belonging (Lister 2007). The connection between having a good life and having
awareness as Indonesian citizens made by many respondents reflects their sense of
belonging as citizens who value the balance of rights and responsibilities for national
development. These reflections indicate that disabled people in this study expect that
DIB has greater potential than just a mechanism for disability mainstreaming. The
majority of disabled informants expect that DIB will enable them to both exercise their
rights and to fulfil their responsibilities as Indonesian citizens to contribute to state-led
development. The following sub-sections discuss key principles of DIB, inclusion and
participation, and how these are significant to realise this expectation.

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7.2.1. Key principles: Inclusion and participation

This section demonstrates that the conceptualisation of inclusion and participation are
multi-faceted for people with disability. Their ideas about what constitutes inclusion and
meaningful participation differs from and/or rather extends beyond that which is
adopted by the government and even within the literature.

a) A comprehensive disability inclusion

As discussed in Chapters Two and Six, inclusion is a contested concept across

development and disability studies and among government officials in this study.
However, this section will show that for people with disability in this study the meaning
of inclusion within the context of DIB both aligns with and extends beyond the ways
inclusion is understood in the literature. This includes, inclusion in economic growth;
inclusion as agents in intentional development; and inclusion as capable citizens in
national development. Each of these approaches to inclusion are explored in this
section, expanding the scope and meaning of the principle of inclusion in DIB

When asked about disability inclusion and its meaning in the DIB implementation
mechanism, disabled people in this study described a comprehensive approach to
disability inclusion, including accessibility measures and support to contribute to state-
led development. For example, ‘Inklusi [Inclusion] is supposed to be tidak setengah-
setengah [not partially] if we are to be fully involved because inclusion does not mean
being included as poor people to receive BLSM’ [temporary cash transfer for social
protection] (GPWD17) and ‘Disability inclusion should be menyeluruh [totally], not only
about building wheelchair ramps’ (GPWD20). Phrases such as tidak setengah-setengah
(not half-hearted) and menyeluruh (totally) suggest that disabled people want a
comprehensive approach to inclusion that is beyond targeting them in poverty reduction
programs as commonly understood in government approaches to DID (see Chapter Six).

In addition to provision of accessibility measures, some informants also identified that

capacity building was required to realise comprehensive inclusion. For example, they
said ‘Inklusi [Inclusion] should be tidak tanggung-tanggung [not half-hearted] that

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requires not only accessibility or assistive devices to meet all different kinds of our
kebutuhan khusus [special needs], but also strengthening the knowledge and capacity
of all people with disability to contribute’ (DAY7) and ‘Inklusi [inclusion] means that all
of us bisa berkontribusi [can contribute] and to do that we need accessibility, alat bantu
[assistive devices], and trainings to enhance our knowledge and skills’ (GPWD24). Such
statements suggest that, irrespective of types and degrees of impairment, there is a
need for both comprehensive individual supports and collective capacity building to
enable them to contribute. These assertions are supported in Law No.8 of 2016 on
Persons with Disability, which guarantees the provision of accessibility as well as
appropriate and sufficient support for disabled people as a right requiring State action.

In relation to their participation in DIB, these disabled informants provided examples of

this kind of capacity building. They said, for example, ‘We want to ambil bagian [take
part] in all government meetings on development planning and budgeting, but we’ll
need to know how government budgeting works before providing our feedback’
(GPWD30) and ‘Not only accessibility, we would also need trainings from the
government about how to understand their budget documents so we can berperan aktif
[play an active role] in planning and monitoring the budget allocation for disability’
(GPWD18). Such reflections suggest that disabled people in this study anticipate playing
an active role as agents in State-led development.

The demand of disabled people in this study to have structured opportunities to improve
their knowledge about government processes can be linked to the knowledge
hierarchies and pembinaan (guidance) in Indonesian development (Li 2007). According
to Li (2007), Indonesian development is characterised by the boundary between
trustees, or those who have knowledge and are responsible for development, and the
objects of development, called ‘the natives’ under Dutch colonialism, ‘the primitives’
under the New Order of Suharto, and ‘communities’ under recent development and
World Bank projects. Trustees are the people who know what is best for the objects of
development, who are considered deficient and are therefore need to be guided (Li
2007). Although there has been a shift from pembinaan (guidance) under Suharto, to
pemberdayaan (empowerment) in Indonesia’s community development programs

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(Syuroh 2011), there remains an element of pembinaan in Indonesian development that
positions people with disability as objects of development.

However, people with disability do not want to be seen as objects of development

where they are kept in a position of subordination as charity recipients, but rather to
become active participants in development. Disabled people in this study explained that
contributing to tanggung jawab sebagai warga masyarakat (citizenship responsibilities)
implies their intention to become pelaku [doers or active agents] in development
through DIB. For example, ‘As perwujudan tanggung jawab sebagai warga masyarakat
[a form of citizenship responsibilities] difabel citizens can contribute to development as
required by DIB in many ways from participating in the Musrenbang to higher decision
making mechanisms’ (DAY3) and ‘Disabled people’s participation in all DIB processes
from planning, implementation and monitoring is an active contribution to help the
government as responsible citizens’ (DAY2). Disabled people in this study conceptualise
what being an agent of development means in three distinct areas: a) being involved in
community development practices; b) being agents within broader processes of
development such as economic activities; and c) being agents of national development
as citizens. Participating in each of these areas requires both the acquisition of
knowledge and access to information.

Playing an active role in community development processes was very important to some
disabled people in this study. For example, they said, ‘As a warga yang baik [good
citizen] I also want to contribute like other people to participate in gotong-royong
[community work] in helping to build my village’ (GPWD3), and ‘Difabel like me can also
contribute to do good things for society like providing job opportunities for jobless
people in my village through my small home-based business’ (GPWD9). Gotong Royong
is a responsibility of all Indonesian citizens to contribute actively in their community
development, which usually happens at a neighbourhood or village level (Razak 2013,
Deviyanti 2013, Dewantara 2017, Pranadji 2017). Gotong Royong as a social capital
initiative can take the forms of contributing time and money and/or labour to help
construct or fix village roads, neighbourhood watch outposts and mosques amongst
other things (Pasya 2011, Pranadji 2017). There is a long history of Gotong Royong that
may influence people’s opinions towards it, and their desire to participate in it as

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citizens. Gotong Royong is considered as a form of contribution that citizens need to
make to show that they are part of their community (Sutiyono 2016). Gotong-royong
was coined by Soekarno, the first president of Indonesia, as the excerpt of Pancasila and
was grounded on indigenous values in Indonesia (Dewantara 2017, Pranadji 2017). To
encourage people’s participation in development, Gotong-royong was promoted by the
New Order regime to actually absorb cheap required labour for top-down
implementation pembangunan (infrastructure development) programs (Bowen 2006).
Thus Gotong Royong conjures up particular ideas of self in relation to society, and being
able to participate seen as critical to belonging to community.

The importance of partnership with government in all development processes was also
raised by some informants. For example, one disability activist commented, ‘I like the
idea that we become a partner of government in all phases of the policy to assist them
with our knowledge and my organisation has proven that we can help the government
here at the villages within our project areas’ (DAY2). Co-working between civil society
organisations and government can help to increase the involvement of civil society in
shaping public policy that ‘strengthens both input legitimacy and policy efficacy’ (Chaney
2017: 408). The phrases expressed by DAY2, such as ‘become a partner of government
in all phases of the policy,’ ‘to work with government for creating inclusion,’ and ‘to
assist the government with our knowledge in advocacy’ indicate the expectations of
disabled people for partnership with the government in shaping, implementing and
monitoring development policies.

Another example of this expectation is seen in a reflection by a grassroots disabled

person who used an analogy of different car components to describe partnership,
suggesting that people with disability have equally important positions as others:

I would like to compare disability inclusion in development to a car. Inclusivity in a

car is represented by the existence of various parts and components in different
sizes and shapes that work together to run the car. The government, policy makers,
society, and people with disability are the components and spare parts to run the
car that we call disability inclusion (GPWD10).

Disabled people and other stakeholders have different but complementary roles and
functions in ensuring disability inclusion in development. The analogy by GPWD10 points

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to the idea of partnership amongst the stakeholders of DID. Disabled people want to
work together with other stakeholders to shape and implement the government policies
related to them and their lives. The reflections of GPWD10 also suggests that the
partnership with government is not only a crucial foundation for disability inclusion, but
also for demonstrating that disabled people are capable citizens.

In summary, the way that people with disability understand inclusion goes beyond the
meaning implied within DIB to mainstream disability into government planning and
budgeting. Instead, inclusion is understood in three ways: inclusion into broader
processes of economic growth (as in an inclusive development model); inclusion into
intentional development practices (not only being recipients of development product,
but also active agents); and inclusion within national projects of development as capable
citizens. All three forms of inclusion recognise the need for accessibility and/or all
impairment-related supports as well as capacity building required by people with
disability. The meaning of inclusion set out here is multiple and contested and may allow
a more expansive conceptualisation of inclusion as envisaged by DIB.

b) Meaningful participation: Beyond passive presence to influence

Just as inclusion has multiple meanings for people with disability, so too does
participation, with implications for how DIB is practiced. As discussed in Chapter Two,
participation has many different meanings in both disability and development literature.
This sub-section discusses the multiple meanings of participation to disabled people in
this study in relation to their involvement in DIB and the broader context of
development.

1) Having a say

People with disability in this study expressed different views on what constitutes
meaningful participation. Some people exemplified meaningful participation as when
they have opportunities to directly voice their thoughts and concerns. For example, they

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commented about being invited to participate in local Musrenbang meetings, which are
the only mechanism for disabled people’s participation in DIB (see Chapter Five). One
respondent noted that ‘Being invited to the Musrenbang meeting but not having the
opportunity to speak is not meaningful participation’ (DAY7). Other informants also
shared similar views saying, ‘There is no need to be invited in such meetings if we cannot
say our concerns at all’ (GPWD16) and ‘We appreciate that they send someone to us,
being in a different room, to ask if we have something to say, but it would be better if
we could say it by ourselves’ (DAY6). Their experiences demonstrate conditional
inclusion in the Musrenbang but not participation on the same basis as others. The
literature on participatory development refers to this kind of participation as ‘tokenist’
participation (Rifkin and Kangere 2002, Monno and Khakee 2012, Jabeen 2013).

The expressions of disabled people such as ‘not having the opportunity to speak is not
meaningful participation’ and ‘it would be better if we could say it by ourselves’ indicate
the importance they place on the opportunity and ability to have a say in the
Musrenbang meetings. In accordance with Arnstein's (1969) ladder of citizen
participation the Musrenbang itself, as an information sharing and consultation forum
of development planning from government to citizens, is characterised as tokenist
participation. Citizens hear about interventions and policies from government planners
and can say their views about them, which are noted as input by the government.
However, their voices may not have any effect and thus not lead to change (Arnstein
1969, Rifkin and Kangere 2002, Monno and Khakee 2012). Participation which involves
informing and consultation may lead to positive effects if there is a reciprocal flow of
information, with feedback opportunities and negotiation power given to citizens, and
assurance that their voices will be taken into account (Arnstein 1969, Monno and
Khakee 2012). However, as depicted in the experiences of disabled people participating
in the Musrenbang, their participation in this key engagement mechanism of DIB is
limited by a number of factors.

First, disabled people in this study talked about the impact that political barriers in
Musrenbang have on their participation and the up-take of disability issues (see Chapter
Five). For example, two disabled informants described their experiences attending some
sessions of the Musrenbang saying, ‘I was invited to the Musrenbang but straight to the

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sub-district level, and I was confused because what people talked about was the
proposals from the lower village level and they had nothing to do with disability’
(GPWD18) and ‘I felt like I was alone there because people got together and talked about
the things they already knew and had discussed in the previous meetings’ (GPWD16).
The experiences of GPWD18 and GPWD16 suggest that access across all levels of the
Musrenbang is inconsistent. Because they only had partial involvement in Musrenbang,
both they and the issues they represented were marginalised. This marginalisation can
be seen in their confusion and frustration in not being able to argue for disability issues
from the outset of the deliberations.

Chapter Five discusses some of the criticisms that Musrenbang is difficult for
marginalised communities to access because participation is based on formal invitations
from the government. Nevertheless, some disabled people in this study reported that
they were able to access Musrenbang via their personal networks. For example, two
disabled villagers participating at a focus group held in Sleman district said, ‘I
participated in the Musrenbang because I got support from a person I know at the
district representative council (GPWD8)’ and ‘I was not invited, but I could attend the
meeting by asking for help from my friend at the Kecamatan [sub-district office] to get
me an invite (GPWD12).’ The use of informal or personal connections by citizens to
bypass procedure in gaining access to State benefits is a common practice in Indonesia
(Berenschot and van Klinken 2018). Berenschot and van Klinken (2018:107) argue that
‘the cultivation of personal connections constitutes an important form of political
agency, as it enables citizens to deal with unresponsive and unpredictable state
institutions.’ The experiences of GPWD8 and GPWD12 suggest that informal
connections with important people in the government may help individual disabled
people to access DIB and other state-led development mechanisms. However, this kind
of informal connection is highly dependent on personal relationships, thus not
universally available, and falls short of the principles of both disability inclusion and
inclusive development.

Two further political barriers that disabled people talked about were prioritisation and
frequent changes in government leadership. The Musrenbang is essentially about
choosing and deciding development issues that are considered as priorities to be

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addressed by government programs (Halimah and Karyana 2016). In practice, the
government is the dominant actor in determining those issues considered as
development priorities as well as the shape and type of development activities (LGSP
2007, Ana Sopanah 2012, Sutiyo and Maharjan 2017). However, there is a fierce
competition between stakeholders (including people with disability) with a very long list
of issues vying for consideration as priority. The statements of a senior official at the
MoNDP and the experience of a disabled villager bear this out:

Musrenbang is a multi-tier process starting from the village all the way to the
provincial level. From a very long wish list made in each level, only five priority
issues are chosen at the final level. For sure, disability is not among the big
priorities. It may have been dropped from the list of priorities to be taken up at the
next level eliminated along with other non-priority issues at the lower levels
(CGOJ4).

I used to propose a vocational training program for the difabel with a follow-up job
placement. They said that my proposal would be noted but then in the higher level
of the Musrenbang I learned that my proposal was gone due to their preference to
priority programs such as road construction and others (GPWD10).

The perspectives of these informants suggest that, within this forum at least, disability
is yet to be recognised as a priority. This finding may not be surprising because disability
has until recently ‘lingered on the fringes of or outside development policy’ (Grech 2016)
and rarely been a priority on any official agenda for policy makers and development
practitioners in many countries in the world (Harris and Enfield 2003, Parnes et al. 2009,
Grech 2016). Although DIB aims to mainstream disability in Indonesian development,
the complex processes of decision making in the Musrenbang, DIB’s key mechanism for
disabled people’s participation (see the detailed processes in Chapter Five), may also
contribute to disability being never prioritised. Because the Musrenbang is principally
an institution of community consultation in which the majority opinion holds, strong
voices usually get preference over more marginal voices. Furthermore, the transition in
the Musrenbang processes from community participation to largely bureaucratic
participation at higher levels further excludes marginal voices (see Chapter Five).

The second issue taken from the reflections of disabled people in this study is about
attitudinal barriers associated with persisting stereotypes and stigmatisation. The views

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of disabled informants suggest that widespread low expectation from others, and the
stigmatisation that creates, are amongst the greatest barriers to their full participation
in Musrenbang. For example, they spoke about being discouraged to participate, ‘They
always ask why people in wheelchairs like me would bother participating’ (GPWD24)
and ‘Parents, friends, and neighbours always said that participation in the Musrenbang
was good, but it was not really that necessary for the difabel like me, for whom it is
very difficult to walk’ (GPWD10). These statements suggest that attitudinal barriers,
stigma or stereotypes from society and even parents and friends, underestimate and
undermine the capacity of people with disability to participate.

In addition to attitudinal barriers, participants suggested that their limited and partial
participation is also due to the lack of accessibility in meeting venues. For instance, a
disability activist said:

People with disability are invited to participate in the Musrenbang but they can’t
have a say simply because there’s no accessibility at the venue of the meetings. The
Musrenbang is held on the second floor and disabled participants are placed at the
lower ground floor and they could only watch what’s going on through a large TV
monitor provided for them (DAY1).

The reflection of DAY1 points out a complete failure of understanding on the part of the
government officials organising the Musrenbang, enabling the mere presence of people
with disability without support and accessibility to ensure their participation. This lack
of physical accessibility has been elsewhere identified as the greatest challenge to
participation of people living with disability in Indonesia (Adioetomo et al. 2014, Thohari
2014).

Informants also importantly reflected that the two barriers discussed earlier, attitudinal
and physical barriers, have a combined effect on the self-perception of people with
disability, leading to individual psychological barriers. Often people with disability
experience both attitudinal and physical barriers simultaneously, resulting in intense
feelings of disempowerment and, for some, a decision to ‘give-up’ on their desire to
participate. For example, two disabled villagers talked about their personal experiences
in facing both physical and attitudinal barriers:

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 I want to attend a Musrenbang meeting at the closest hamlet, but I can’t go there
because the path and the venue are not accessible. I need to ask for someone’s help
to go there. I used to ask for a person’s help to take me with my wheelchair to a
meeting, but that person said, ‘why do you have to go there if you would need help
all the time.’ Then I thought it’s better off for me to just stay at home. It’s a burden
to me to think that my participation would be bothersome to other people
(GPWD24).

I always feel like I can do nothing, and I believe it more when my neighbours and
family always say something like that to me. That’s why I rarely mingle with people
outside although I really want to (GPWD14).

As the disabled informants indicate above, psychological barriers hamper full

participation. Stigmatisation can impart a kind of psychological barrier that discourages
people with disability from participating since they may be dealing with a sense of shame
and low self-worth or self-confidence as reflected in their perceptions of themselves as
‘a burden’ or ‘bothersome to other people’ and feeling like ‘I can do nothing.’

This kind of psychological barrier is not inherent in disabled people, but it arises because
of their life experiences related to the negative social construction of disability, which is
often internalised by disabled people themselves. This situation is called ‘internalised
ableism’ and can mean people with disability emulate the ableist norms and develop
negative views of their own impairments (Campbell 2008). People with disability in
Indonesia are generally seen by society as unfortunate, un-ideal humans, weak and
powerless people who need to be helped with charity or donations (Purwanta 2012,
Santoso and Apsari 2017, Suharto et al. 2017). Furthermore, it is still common to relate
the cause of one’s impairments to God’s punishment and/or redemption for the past
misdeeds of parents or previous generations (Thohari 2007). Such stigmatising views
may condition people with disability to internalise feelings of inferiority. Even worse,
stigma against disabled people can have a negative domino effect on their personal,
family, social and career lives (Yusainy et al. 2016).

These four barriers — namely political, physical, attitudinal and psychological — prevent
people with disability from achieving their expressed desire to fully participate in all
levels of the Musrenbang. Demanding such full participation reflects their awareness of
their rights as Indonesian citizens. However, the Musrenbang itself is yet to include a
coherent framework for the provision of the range of supports and institutional

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mechanisms required for full participation by disabled people in DIB. The Musrenbang
is found to be unaccommodating, where people’s participation is generally in the form
of mere presence at the meetings, without opportunities and support to speak or to
bring their concerns into development agenda setting. If DIB is going to only use the
Musrenbang for disabled people’s participation, a systemic approach or procedure
within the mechanism of the Musrenbang is required to support disabled people to be
an expected and accepted part of the Musrenbang at all levels.

2) Being able to influence

Disabled people in this study not only talked about the opportunity to have a meaningful
say in mechanisms such as the Musrenbang, but also noted the importance of being able
to influence state-led development policies and programs. Some disabled informants,
for instance, said, ‘The very key is how we can influence because there is no use of
speaking a lot to the government if what we tell them never makes any changes’
(GPWD15) and ‘Participation of difabel people needs to be able to influence the policy,
only in that sense that participation can be said lebih bermakna’ [more meaningful]
(DAY1). The reflections of GPWD15 and DAY1 indicate that disabled people desire to
influence and make changes in state-led development processes. The idea of meaningful
participation by disabled people in the study is in accordance with the meaning of
participation in development, in which poor people are to determine and decide their
development needs, how those needs should be met, as well as how to manage the
development process (Mosse 2004).

White's (1996) concept of representative participation entails giving citizens a voice in

the decision making and implementation processes of policies that affect their lives.
People with disability in this study argue that to be able to have influence they need to
have representation at the level of decision making. For example, they commented on
the importance of disabled people being within government systems saying, ‘A difabel
person needs to be one of important decision makers in the government because we’ll
have better chances to make an impact within government policies to our benefit, and
our participation at the lower levels would be stronger’ (GPWD8) and ‘Once any of us

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are inside the system of decision making, our participation will be impactful’ (GPWD20).
According to these informants, the presence of people with disability within the sphere
of government decision making can ensure that their concerns and interests are able to
influence all policy processes.

The statements of GPWD8 and GPWD20 indicate their hope that people with disability
achieving influential positions in government will be likely to represent their voices and
aspirations. Law No 8 of 2016 mandates the creation of a National Disability
Commission, which would take on this role of representing the needs of disabled people.
This can be an appropriate avenue for disabled people to take on leadership roles within
government and advocate for the needs and full participation of people with disability.

However, in relation to disability representation in government decision making,

grassroots people with disability in this study propose a strategy more squarely in the
political realm. They talked about the possibility of having a political party for and by
people with disability. For example, they said, ‘To have our person in the parliament that
can make decisions and pressure the government on our behalf, why don’t we just
establish our own political party?’ (GPWD2) and ‘It would be very difficult to have our
full participation if we do not get into politics such as having people with disability in
political parties’ (GPWD9). Such a view of political participation also represents the
sense of active citizenship. In relation to this, Huntington and Nelson (1976) hold that
political participation is an activity by private citizens, either individually or collectively,
that aims to influence government decision making. Through political participation
people with disability may be better able to exercise their citizenship right to influence
government decision making to ensure their participation in development.
Furthermore, Law No. 8 of 2016 on Persons with Disability, particularly Article 13 on the
right to politics, guarantees the rights of Indonesian disabled people to establish or to
join a political party.

However, people with disability wanting to engage in politics, particularly joining a

political party, are confronted with unaccommodating attitudes of political parties in
Indonesia (Gustomy 2017). Disability issues are not on the agenda of Indonesian
politicians and their political parties (Aritonang 2014, Gustomy 2017, Razak 2018) and

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parliamentarians with disability are extremely rare. Let alone being elected as
parliamentarians, disabled people’s rights to vote remain hindered by various barriers.
For example, society generally still doubts the capacity of people with intellectual and
mental disabilities to vote (Siddiq 2018, Lesmana 2018). Accessibility remains the main
obstacle for people in wheelchairs and people with visual impairments due to
inaccessible voting booths and ballots (Hamdi 2018, Wardhani 2018). Moreover, having
a disabled parliamentarian does not necessarily ensure representation of the interests
of people with disability in the political agenda. For example, a disabled former member
of parliament from a province in Indonesia admitted that she was not aware of disability
rights and disability inclusion during her tenure as an elected parliament member of her
province (Ani 2016, pers. comm., 27 September), only realising the importance of
fulfilling the rights of persons with disability after she retired and joined the disability
movement in her city.

In summary, people with disability in this study attach multiple meanings to

participation beyond what is described in DIB. Participation of disabled people in the DIB
implementation guideline is confined to direct and indirect participation in Musrenbang.
Disabled people however see meaningful participation beyond the intent of DIB: not just
having opportunities to directly voice their thoughts and concerns in the Musrenbang;
but also being able to influence policies and programs by having representation at the
level of decision making and having a political party for and by disabled people. These
different ways of understanding DIB principles of inclusion and participation, as
articulated by disabled people in this study, need to inform this policy and effective
strategies are also required to eliminate the barriers preventing their participation.

7.2.2. Disability Inclusive Budgeting and the importance of recognition and

legitimacy

The expressions of the informants such as ‘kita ingin diterima, diakui’ [we want to be
accepted, recognised] (GPWD15) and ‘participation of persons with disability needs to
be legitimated in relevant regulations and policies’ (DAY7) suggest that such recognition

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and legitimacy is crucial to ensure their comprehensive inclusion and meaningful
participation and in turn to enable them to influence their greater expectations of DIB.
This sub-section aims to understand the demand of people with disability for recognition
and legitimacy in relation to their inclusion and participation in DIB.

a) Recognition

Recognition of disabled people’s participation and contribution is crucial to counter

ableism (Lister 2007, Lorenzo and Coleridge 2018). The importance of such recognition
of participation of people with disability is expressed by the disabled informants in this
study. They spoke about being accepted and being useful to society as recognition for
their ability to contribute. For example, a disabled participant of the focus group held in
Sleman said:

We cannot participate in social activities and government programs such as DIB if

they [society and government officials] still think that we are useless. We are
disabled but we want to be digunakan di masyarakat dan pembangunan yang
dijalankan pemerintah [to be used in society and state-led development]. Some
difabel may lack formal education, but it does not mean that we can’t contribute.
For example, I know what kind of accessibility is required for blind people because
I have been blind all my life and know what I need. That’s why kita ingin diterima,
diakui [we want to be accepted, recognised] (GPWD15).

From the informant’s statement, it can be inferred that recognition in this context
means that society and the government value people with disability as equals who have
credibility and authority to represent themselves and their interests in state-led
development processes. ‘Digunakan’ (to be used or put into use) does not have a
negative connotation in this context since its implicit meaning is about being valuable to
society. Such expressions in this context suggest that disabled people in this study
expect society and the government to recognise the capabilities of people with disability
by including them actively in community activities and state-led development programs.

The informants also demonstrated a sense of positive understanding of themselves as

disabled people when they were recognised and their capabilities were valued like other
citizens. For example, a grassroots person with disability from Gunung Kidul district said:

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 Difabel people have to actively contribute to the community. We are not supposed
to be always seen as poor and incapable that we are only called in when there is
charity or donation. That [only invited to receive donations] is not inclusion. We
don’t want to be always treated like that. We want to be diuwongke [to be treated
as human, explained below] (GPWD30).

The statement of GPWD30 raises an interesting and important point that challenges the
persisting deficiency model in the implementation of disability policy in Indonesia.
GPWD30’s statement indicates that people with disability in Indonesia are commonly
positioned as passive objects in government programs. To counter this positioning,
people with disability demand recognition that they can actively contribute and be seen
as having the potential to become capable. That demand is implied by GPWD30 through
the use of a Javanese idiomatic expression diuwongke, which literally means to treat a
human as a human being, while the deeper philosophical meaning of diuwongke
implicitly requires that all people, irrespective of their status, backgrounds, appearances
and conditions, are to be treated with appreciation and recognition (Affandi 2015).

b) Legitimacy

In addition to recognition, people with disability in this study claimed that legitimacy is
required to ensure their inclusion and meaningful participation in state-led
development policies and programs. People with disability in this study talked about the
need for regulations and policies to give legitimacy to disabled people’s participation.
They, for example, said, ‘Participation of persons with disability, either as an individual
or through DPOs, in development or any government programs need to be legitimated
in relevant regulations and policies’ (DAY7) and ‘The government needs to have it
[participation of disabled people] written clearly in regulations so that we are confident
to tell the government that it’s our rights to participate’ (GPWD8). The reflections of
these informants, a disability activist and a grassroots disabled person, indicate that they
agree on the importance of legitimacy, understood as mandates for disabled people’s
participation through regulations and policies, to ensure their participation. Given such
legitimacy, people with disability will have more confidence to claim their rights as
citizens to participate in state-led development as indicated in GPWD8’s reflections.

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Such statements of disabled people suggest that legitimacy means a mandate conferred
by government mechanisms, regulations or policies that requires people with disability
individually and collectively be recognised as integral to any state-led development
processes. This kind of legitimacy is important to the implementing mechanisms of DIB
because, as indicated in Chapter Five, participation of disabled people in all
implementation processes is identified as a central underpinning principle, but people
with disability are yet to be treated as legitimate stakeholders in DIB’s instruments.

The conceptualisation of legitimacy by the disabled informants in this study suggests

that disabled people should not have to argue for their seat at the table in discussions
of all development topics; rather they should be institutionally required to be at the
table, just as it is now recognised that institutional mechanisms are required to ensure
that women are at the table. Recognition and legitimacy are intertwined, such that each
of these can be a precondition for the other. Legitimacy conferred by government
regulations and policies may help people with disability to gain recognition by society
and government officials. Recognition and legitimacy can also be mutually constitutive.
Recognition of people with disability as capable members of society emerges at the
same time as legitimacy, conferred by the requirement that people with disability are
an essential part of state-led development policies and programs. In sum, according to
disabled people in this study, recognition and legitimacy by governments and broader
society are fundamental to ensuring their participation in all state-led development
processes.

7.3. Conclusion

This chapter demonstrates that people with disability have diverse priorities for DIB;
they attach various meanings to key principles of DIB, inclusion and participation; and
identify the ingredients to achieve their participation, recognition and legitimacy. The
meanings attached by disabled people to the main aspects of DIB such as priorities,
inclusion and participation are much more complex than those indicated in the policy

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guidelines and as communicated by government officials in the preceding chapter
(Chapter Six). While the list of priorities is not comprehensive, it clearly shows that
disabled people have an essential voice to inform and reaffirm the importance of
implementing the principle of inclusion and participation in DIB. It also suggests the
important role that disabled people have in articulating the steps needed to realise a
comprehensive paradigm shift to a human rights approach to disability in development,
including partnerships with and support for DPOs, awareness-raising about disability
rights and reliable national disability data. Several of the priorities show that disabled
people have ambitious targets for DIB, beyond what the DIB Guideline currently
mandates. By demanding that DIB be used to enable funding for DPOs, accessibility and
awareness raising, disabled people in this study are arguing that specialist services are
also a necessary part of disability mainstreaming. Above and beyond, disabled people in
this study revealed a bigger expectation for DIB: that it has the capacity to enable them
to take their rightful place as Indonesian contributing citizens. The findings in this
chapter highlight that Indonesian disability rights must emphasise the ability to fulfil all
citizenship responsibilities, namely to contribute to and participate in development. This
particularity indicates the complex and unique relationship between citizenship and
human rights of persons with disability in Indonesia. Overall, the findings suggest that
budget allocation for meeting the development needs of people with disability through
DIB is only one aspect of disability inclusive development. In addition, people with
disability have hopes that this policy should enable their ability to be active participants
in the broader national development agenda, and thereby fulfil their responsibility as
Indonesian citizens.

Whereas Chapter Six identified the policy/practice gap, this chapter has revealed the
gap between what people with disability want from DIB, and what it would look like in
an ideal setting. In the next chapter, we look at a positive example of how this can work
in practice. In relation to this, Chapter Eight now turns to discussing how key principles
that underpin DIB can be realised through a case study on a localised good practice of
Desa Inklusi (Inclusive Village) in Sleman District of Yogyakarta.

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 CHAPTER EIGHT
LAYING THE GROUND WORK FOR INCLUSION:
A CASE STUDY ON THE DESA INKLUSI

The earlier Chapter Five presented the conditions that influenced the introduction of
DIB as a disability mainstreaming mechanism in Indonesia, outlined the extent to which
DIB has been implemented and identified some of the challenges in achieving DIB.
Chapter Six further elaborated a range of paradigmatic and implementation issues that
appear to contribute to the challenges. Chapter Seven explored the voice of people with
disability regarding their expectations of DIB and suggested possible ways to address the
limitations or issues with achieving DIB. This current chapter, Chapter Eight,
demonstrates how the expectations of disabled can be realised through a localised
positive example of the Desa Inklusi (inclusive village) initiative in Sleman District of
Yogyakarta. This chapter uses Desa Inklusi as a case study to demonstrate how the
principles of inclusion and participation of disabled people in development activities,
which underpin DIB, can be implemented and realised in practice.

The first section of the chapter discusses why disability inclusion in development, which
DIB aims to achieve, can start from Desa (village). The context of the Desa Inklusi
initiative is then explored in the second section. Drawing on descriptions and reflections
from participants, the third and fourth sections analyse the outcome and reflections of
the pilot Rintisan Desa Inklusi (Pioneering Inclusive Village) initiative implemented in
eight villages in Yogyakarta Province.

8.1. Starting disability inclusive development from the Desa (villages)

In Indonesia, the village (Desa) is the level of government closest to the people at the
grassroots level.22 Desa is named differently in different regions in Indonesia such as

22In accordance with Indonesian Law No.6 of 2014 on Village, Desa as opposed to the Kelurahan (the lowest
government administration under the Kecamatan whose leader is appointed by the city government) is a unit of

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Nagari in West Sumatra, Gampong in Aceh, and Kampung in Papua, and is situated
within district and municipal areas (MoF 2017). Desa has decentralised governance with
their institutional arrangement, decision making mechanisms, as well as accountability
and budget reporting similar to a local government (Sutiyo and Maharjan 2017). The
population of each Desa in Indonesia ranges from 800 to 3,200 people (Berdesa 2018).
This section discusses why Desa can be the first point of departure to realise disability
inclusive development, including through a possible mechanism like DIB.

Desa was introduced as the lowest autonomous level of government in Indonesia

through Law No.6 of 2014 on Village (UU Desa). Its purpose was to increase participation
of villagers, including marginal groups, in village development. UU Desa stipulates that
village development planning and budgeting allows villagers to be directly involved in
decision making and implementation of village development (Ra’is 2017). UU Desa also
requires that villagers participate in Musyawarah Desa (village level Musrenbang),
including providing responses to the village government report on village development,
obtaining all information about village development planning and budgeting, and
establishing the village owned enterprises called the BUMDes.

There are several reasons why inclusive development should start from the village. The
views of disability activists in this study, who were directly involved in planning and
implementing the Desa Inklusi initiative, suggest that Desa as the lowest level of
government and the introduction of Dana Desa (village funds), are two interrelated
reasons for starting inclusive development at the Desa level. One disability activist
explained that, ‘The enactment of UU Desa deserves our appreciation because the law
can be seen as the implementation of our president’s Nawa Cita and the law is inclusive
of difabel and other marginal groups’ (DAY4). As discussed in Chapter Six, Nawa Cita was
President Joko Widodo’s 2014 national development agenda, and included nine
development priorities, forming the basis of the National Medium-Term Development
Plan (RPJMN). The third of these development priorities focused on developing and
strengthening Indonesia’s villages and rural areas within the framework of a unitary
state. In saying that ‘the law is inclusive of difabel and other marginal groups’, DAY4 is

community that has its own authority to regulate and manage the affairs of its governance and the interests of local
communities based on community initiatives. Head of Desa is elected once in six years by the village community.

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referring to the government regulation to implement UU Desa, Indonesian Government
Regulation No.43 of 2014. Article 127 of this regulation requires that village
development planning and budgeting be done by encouraging villagers’ participation;
utilising existing resources sustainably; taking into account local priorities, potentials
and values; and being inclusive of the poor, disabled people, women, children and other
marginal groups. Article 3 of the UU Desa further stipulates that each Desa (village) is
governed based on thirteen principles, three of which promote inclusivity: keragaman,
kebersamaan, kesetaraan (diversity, togetherness, equality). This initiative to promote
greater inclusivity in village development is particularly important for the people with
disability living in over 70,000 villages across Indonesia, because they face greater
barriers and higher levels of discrimination than those in the urban areas (Eko 2018).

Dana Desa (village funds) is also very important to realise the Desa Inklusi initiative.
Another disability activist explained the role of Dana Desa (village funds) in
implementing inclusive development at the village level, saying, ‘The Dana Desa
allocation may provide opportunities for us to integrate disability needs because
villagers can decide [how it is allocated and used] with the village government’ (DAY1).
Each year the Indonesian government allocates Dana Desa through the APBN (State
Budget) to each village, based on their population, poverty rate, area size, and
geographical difficulties, to help fund village development and empowerment activities
(MoF 2017). The funding is used to improve public services in villages, to reduce poverty,
to boost the village economy, to reduce the development gap between different
villages, and to empower villagers as subject dari pembangunan or development
subjects (MoF 2017). The village government allocates Dana Desa in consultation with
villagers for various purposes according with their discretion and local priorities (Sutiyo
and Maharjan 2017). This means that disability inclusion in Dana Desa will depend on
the local priorities that are determined based on consultation processes between
villagers and the village government.

Decision making on village development priorities and the allocation of Dana Desa
(village funds) both happen annually through a village level Musrenbang. This village
level Musrenbang is attended by the village council and villagers, including tokoh adat
(customary leaders), tokoh agama (religious leaders), tokoh masyarakat (local figures),

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tokoh pendidikan (academics) and representatives from farming and fishery groups,
women’s groups and marginal groups. Since 2015, an average of IDR 800 million (AUD
80 thousand) has been allocated to each village to be used by the village government to
build the infrastructure needed by the villagers such as village roads, bridges, clean
water installations, village markets, and village owned enterprise and others (MoF
2017). Such infrastructure development is done through Swakelola (a system of utilising
village resources and labour), padat karya (labour intensive) and Cash for Work projects
(MoF 2017).

SIGAB (Institution for Advocacy and Integration of Differently-Abled People) recognised

that the Desa government and Dana Desa were key opportunities to promote full
participation of disabled villagers to influence and shape village development.23 In 2014,
SIGAB proposed an innovative approach to advocate for disability inclusion in
development at the village level called Rintisan Desa Inklusi (Pioneering Inclusive
Village). The following sections discuss Desa Inklusi and the lessons learned from this
initiative to provide insights on how to implement the principles of inclusion and
participation of disabled people in DIB.

8.2. The context of Desa Inklusi initiative

Study of the Desa Inklusi experience shows that capacity-building for people with
disability and awareness-raising for government officials both have an important role to
play in addressing the argument made in Chapter Six (Section 6.1.) that a more
comprehensive paradigm shift from a social welfare to a human rights approach is
needed in order to realise DIB. This section outlines how the Desa Inklusi started and
has progressed to ensure the paradigm shift happened in both thinking and practice.

The idea of creating an inclusive village emerged from discussions and workshops at
Temu Inklusi (Inclusive Forum), an event held by SIGAB in Yogyakarta in December 2014,
as a part of the International Day of Persons with Disability. Temu Inklusi was inspired

23This progressive organisation was established in Yogyakarta on 5th May 2003. SIGAB has ideals to defend and fight
for the rights of persons with disabilities (the difabel) throughout Indonesia to manifest equal and inclusive life.

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by the enactment of the UU Desa in 2014 and was attended by 500 participants including
CSOs, government representatives, academics and people with disability from various
DPOs. It consisted of several activities such as seminars, workshops and focus groups.
Through these activities participants discussed the concept of Desa Inklusi and
developed aims, indicators and a plan to realise it.

In 2015, the Government of Sleman Regency signed an MoU with SIGAB to run a pilot of
Rintisan Desa Inklusi (pioneering inclusive village) initiative across eight villages in two
districts of Yogyakarta: two villages in Sleman Regency (Sendangtirto and Sendangadi)
and six villages in Kulon Progo Regency (Ngentakrejo, Wahyuharjo, Gulurejo, Jatirejo,
Bumirejo, and Sidorejo) as shown in Figure 4 below. This initiative, which was also
supported by the PNPM Peduli program (see Chapter Six), was an affirmative
government action to support villages to be more disability inclusive. Progress towards
this goal is measured across nine inclusivity indicators developed by SIGAB and other
organisations before and during the Temu Inklusi event in 2014: 1) having
comprehensive and updated data and information on village assets, including data of
persons with disability; 2) having village organisations for people with disability; 3)
ensured participation of people with disability in policy making; 4) disability inclusive
planning and budgeting (budgeting processes, budget allocation, implementation and
monitoring); 5) having an implementing regulation (village regulation); 6) equal access
to all village public services; 7) accessible village infrastructure; 8) social responsibility
and commitment of the villagers; and 9) space for innovating and networking. 24

24Presentation of the Director of SIGAB on developing the Desa Inklusi during the national seminar held as a part of
the 2nd Temu Inklusi (Inclusive Forum) activities in Kulon Progo of Yogyakarta on 25th August 2016.

190
Figure 4: The area coverage of Desa Inklusi in Sleman regency and Kulon Progo regency
Source: SIGAB

The Desa Inklusi can be seen to address both the challenges to implementation and the
desires of people with disability explored in Chapters Six and Seven. There were
particular programs of this initiative that helped to overcome the barriers to
participation in all village development processes including the Musrenbang. The Desa
Inklusi initiative actively engaged and empowered disabled people through capacity
building programs in each of the villages. These programs taught people with disability
how to advocate for disability-inclusive village development, and how to include a
disability rights perspective into the village policy making processes such as the village
level Musrenbang. For example, SIGAB started capacity building for people with
disability in the village by helping to organise them into village DPOs called Kelompok
Difabel Desa (KDD). These village DPOs were then officially inaugurated by the village
government. SIGAB also organised a series of trainings, including leadership and
organisational management, accessibility, village database management, information
technology and computing, journalism and public speaking. The training on public
speaking specifically aimed to help disabled villagers not only to overcome their
psychological barriers but also to voice their concerns and needs when participating in
Musrenbang meetings at their villages. Trainings like these hold important lessons for
improving the participation in DIB.

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Furthermore, to build the spirit of inclusivity and to raise the awareness of non-disabled
villagers about the ability of their disabled fellow citizens, different livelihood trainings
were also conducted by including non-disabled participants. These programs were
decided and directed by SIGAB in consultation with the villagers. In an interview the
director of SIGAB reflected on the importance of this approach, saying ‘The inclusive
trainings, in turn, built acceptance and recognition towards people with disability as an
important and resourceful community that can participate in village development.’

Figure 5: A village disability activist raising the awareness of village government

officials
Photo source: SIGAB

Capacity building programs organised and delivered by SIGAB were intended not only
for disabled people and villagers but also for the government officials. As Figure 5 shows,
SIGAB, in collaboration with relevant CSOs and local government institutions, also ran
trainings for village government officials and leading figures, including training on
inclusive education and village budget management in the context of Law No.6 of 2014
on Desa. These trainings aimed to increase the technical knowledge and capacity of
village administrators to include a disability perspective and people with disability in
village development, work plans and budgets. Such trainings are important to address
the paradigmatic issues identified in Chapter Six such as the views of some government
officials towards people with disability that were still informed by the deficiency model
of disability. The organisation and delivery of such trainings by SIGAB also demonstrates
how key ingredients to meaningful participation identified in Chapter Seven such as

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partnership, recognition and legitimacy, can be realised in practice.

To further strengthen partnership with government institutions, SIGAB and the regency
governments of Sleman and Kulon Progo also organised multi-party workshops for
different local government departments (SKPDs). The director of SIGAB emphasised that
‘these workshops allowed SIGAB and the government to identify opportunities and
challenges in expanding the implementation of Desa Inklusi initiative to all villages in
both regencies.’ These workshops aimed to promote the Desa Inklusi initiative and its
underpinning principles, but they also provide clues to what a more effective
implementation of DIB might look like. People with disability surveyed in the previous
Chapter argued that for DIB to be successful, it was essential to educate government
officials about disability rights. The positive outcome of the Desa Inklusi initiative is
discussed in the following section.

8.3. Outcomes of the Desa Inklusi

Discussion with the Director of SIGAB and on-site visits at SIGAB’s showcase site of
Sendangtirto village in Berbah Subdistrict of Sleman Regency, conducted as a part of this
study fieldwork in August 2016, reveal some noteworthy changes resulting from the
implementation of Desa Inklusi initiative. The changes are seen both to public
infrastructure such as wheelchair ramps in the entrances to mosques, village hall, public
health centre and sub-district offices, and also to the protection of the rights of persons
with disability through village regulation.

The provision of accessibility and the existence of a legal framework are some of the
measures required to ensure full participation of disabled villagers in their village
development. Physical accessibility for village infrastructure was built with active
involvement of disabled villagers from design, implementation to evaluation. A disabled
villager shared his experience of participating in building physical accessibility
infrastructure in his village saying, ‘Difabel were directly involved in the accessibility
project, and I am so proud because I was trusted by the project coordinator to build
wheelchair ramps and accessible toilet at the Balai Desa’ [Village Hall] (GPWD6). This

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statement demonstrates the role of difabel as a motivation for disabled people to
become active agents in development citizenship (see Chapter Eight for further
discussion on difabel citizenship), and the positive effect that being seen as valued
citizens has for people with disability.

The budget allocated from the Dana Desa to build accessibility and to encourage the
active involvement of disabled people in village development was due to the Peraturan
Desa (Village Regulation). The village regulation on disability inclusion is one of the
indicators of the Desa Inklusi and therefore this becomes the first priority of the pilot
Rintisan Desa Inklusi (pioneering inclusive village initiative). This regulation is important
as the legal framework for disability inclusion in village development planning and
budgeting. For example, the director of SIGAB explained that ‘The Peraturan Desa at
Sendang Tirto village enables the village government to allocate budget from the Dana
Desa for disability needs such as accessibility and capacity building for village DPOs.’ He
added that the existence of a Peraturan Desa on disability inclusion also requires the
village government to systematically allocate disability funding in the APBDes or village
budget. The statement suggests that the village regulation on disability is an enabling
precondition for the inclusion of disability in village development planning and
budgeting from the Dana Desa.

Disabled people have participated at least to some extent in the multi-tiered

Musrenbang processes as a result of the Desa Inklusi program. People with disability in
the villages participate fully in the village level Musrenbang through their village DPOs,
Kelompok Difabel Desa (KDD), under the coaching and fostering of SIGAB. Some disabled
informants in this study reported positive experiences participating in the Musrenbang.
They, for example, said, ‘I and a few other difabel people on behalf of our DPOs were
able to propose some important issues related to the difabel needs such as accessibility
and disability data (GPWD10)’ and ‘My Kelompok Difabel Desa [village DPO] has
approached the Kepala Desa [head of village] requesting an invitation for
representatives from my DPO to attend the village Musrenbang next year as a part of
Desa Inklusi program (GPWD11).’ Both GPWD10 and GPWD11 indicate their experience
and expectation that DPOs play a key role in supporting their participation in village
development including, in their case, helping them to access the Musrenbang and to

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voice their concerns during the Musrenbang meetings. This is in contrast to the
experiences of people with disability surveyed in Chapter Seven, where physical barriers
and paternalistic views of government officials denied people access to the meetings.

In the case of Desa Inklusi, the outcome of this opportunity for participation was
significant. Villagers with disability were able to influence village development
budgeting and ensure that their needs were included. In the 2015-2016 financial year,
this resulted in one and two percent of the total Dana Desa being allocated for disability-
related programs across the five villages.25 These programs included building
accessibility, such as wheelchair ramps at the village government office in Figure 6
below, capacity building and livelihood trainings, such as training in livestock fodder and
purchasing goats for disabled farmers, coordination and monthly meetings of the village
DPOs, and awareness-raising for the village DPOs and people with mental disability. And
all of these programs were proposed by people with disability themselves through the
Desa Inklusi initiative.

Figure 6: Wheelchair ramps at a village hall built by disabled villagers and funded by
the Dana Desa
Photo source: SIGAB

25
The total amount of Village Funds (Dana Desa) allocated to each village to be used by the village
government is about IDR 800 million (AUD 80 thousand). See p.190.

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As indicated in Chapter Seven, data is seen as critical to the realisation of DIB. The
availability of reliable and accessible data is one of the keys to significant achievement
of the Desa Inklusi. This was achieved by launching and operating the Sistem Informasi
Desa (SID) or Village Information System. SID is an internet-based database application
that is open for public access and contains information about village population,
resources, development planning and budgeting documents (Sulistyowati and Dibyorin
2017). SIGAB and one of its partner local CSOs, CRI (Combine Resource Institution),
trained people with disability to participate in operating the SID, building a village
demographic database and inputting disability data to the system. The first priority
raised by disabled people surveyed in the previous chapter was the need for a more
comprehensive and reliable disability dataset. People also argued that involving DPOs in
data collection would help ensure that the data collected about people with disability
was more reliable. Here in Desa Inklusi, people with disability are also involved in
managing disability data, and is another example of the kind of meaningful participation
in development that people with disability in Chapter Seven said they wanted. This is
also in line with the DIB Guideline, which states that disabled people should be involved
in all stages of program development, including monitoring and evaluation. In addition
to generating the much needed data, including people with disability in that important
program would also mean recognising them as doers of development. As seen in
Chapter Seven, recognition is required to full participation of people with disability in
development.

As mentioned earlier in this chapter, Law No.6 of 2014 on Village or the UU Desa, and
the third Nawa Cita, are part of the government of Indonesia’s increased allocation of
funding to support the village development. The allocation of Dana Desa (Village Funds)
is done in a proportional way based on the population number, the area, the poverty
rate and the geographical barriers. The funds derive from the State Budget (APBN) and
are transferred to the Local Government Budget (APBD) of the city or regency
government to finance governance, development, community development and
empowerment in the villages. The positive outcomes seen in Desa Inklusi to promote
inclusion at the Desa level, suggest that there may be greater possibilities for DIB’s
nationwide implementation if this policy is integrated with village development policies.

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Given the national government’s focus on village development, as evident in the
enactment of UU Desa and the introduction of Dana Desa, there may be political will to
scale up this model for best practice. The following section provides further analysis of
this possibility through reflections on how the Desa Inklusi initiative has enabled
meaningful participation of disabled people as a key to DIB implementation.

8.4. Reflections on the Desa Inklusi initiative

Drawing on the reflections of government officials and disabled people who have taken
part in the Desa Inklusi, there is a strong sense that this initiative provides a positive
example of meaningful participation of disabled people in practice. In reflecting on their
experience of the initiative, informants identified three key factors that can support
participation of disabled people: a) local governments honour the commitments made
in relevant international and domestic legislations for active engagement of disabled
people, b) effective working together or synergy between the local government and
DPOs, and c) leadership by local Disabled People’s Organisations with support from
INGOs and the local governments. Each of these will be explained as follows:

8.4.1. Honouring legislative commitments

Indonesian domestic laws such as the new rights-based Disability Law No.8 of 2016 and
(Article 2) and the Village Law (UU Desa) No.6 of 2014 mandate full participation of
people with disability in all processes of state-led development. Two different
informants articulated the importance of these responsibilities to be shared by all levels
of government. A sub-district government official said, ‘Involving and talking with the
difabel when we design and do development programs is the stipulation of both
international and national laws, and the commitment of all Heads of government to this
mandate is very important to support the difabel’s participation as required by the laws’
(LGOY4). A disability activist similarly emphasised the importance of this commitment
by government, ‘The village law that requires active involvement of all villagers including

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the difabel is the main reason Heads of villages do all they can to support participation
of villagers with disability in the Desa Inklusi program’ (DAY1).

As has been argued in Chapter Five, however, legal changes are not sufficient to ensure
implementation, so that commitment to supporting the participation of disabled people
also requires political will of the government officials to put them into practice. This
political will may arise from the kind of consistent working relationship between the
village government and a local DPO that the following sub-section discusses. As
addressed in earlier sections of this chapter, UU Desa requires the commitment of the
village government to actively involve disabled people in the local level Musrenbang and
allocate budget from the Dana Desa (village funds) to meet their needs, such as
provision of physical accessibility.

Beyond support for individual access from the government, participants identified
support at the organisational level in the form of financial support for village DPOs’
activities. For example, a disabled villager expressed how his village DPO is able to keep
running due to financial support from the government that also helps the organisation
to maintain their active involvement in village development activities. He said,
‘Continuous funding from the village government to my village DPO is very helpful for
daily operations and that my DPO is always invited in all meetings about village
development planning and budgeting to represent minority groups’ (GPWD7). As
identified in Chapter Seven, small DPOs have such limited access to funding sources that
even maintaining daily operations was hard for them. In this best practice of Desa
Inklusi, this organisational support enables broader representation of issues beyond
those of individual disabled people and instead draws attention to the importance of
representative organisations of disabled people who are able to speak to the issues
relevant to the collective.

8.4.2. Disabled People’s Organisations (DPOs) and governments working together

Informants indicated that the success of the initiative was underpinned by positive
working relationships between a local DPO and government officials. This is exemplified

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by the achievements of Kecamatan Berbah of Sleman Regency in Yogyakarta Province
in establishing the Tim Penanggulangan Kemiskinan Inklusi (Disability Inclusive Poverty
Alleviation Team) as a part of Desa Inklusi program in 2016. A local government official
explained what was learned from a local DPO in informing the design of this innovative
program of disability inclusive poverty alleviation from sub-district to village levels:

Learning from SIGAB, there are three important points that we required of the program.
First, no discrimination; second, involving difabel citizens in the activities of poverty
alleviation team; and third, providing the difabel with as open space for participation as
possible particularly in development planning (LGOY4).

The reflection of LGOY4 indicates that her awareness of full participation of disabled
people as key to successful disability inclusion in development emerged from a good
working relationship between the Berbah sub-district government and SIGAB. This
occurred via an open learning process and through commitment to transfer of
knowledge about disability rights and inclusion from SIGAB to the Head of Berbah sub-
district.

One participant described the process as the sub-district government continuously

working with SIGAB to reflect on the design, implementation and evaluation of their
disability inclusive programs:

The Desa Inklusi program was indeed first proposed by SIGAB. Having learned the
concept introduced by SIGAB, I realised that it’s something remarkable because
disability inclusion in development cannot happen without active involvement of the
difabel and it should start from the village. We always learn new things from SIGAB,
work together and support each other (LGOY4).

The Head of Berbah sub-district’s constant engagement and consultations with SIGAB
demonstrates the outcome of a trusting relationship between a local government and a
local DPO, and a willingness to work together. Specifically, local leadership of prominent
figures in the government and close ties with local DPOs creates the foundations for
disabled people’s participation in village development.

However, unpredictable changes in government leadership is a common occurrence

particularly in the bureaucracy of local governments in Indonesia (Yassin 2016). This can
present a challenge in sustaining working relationships between the government and

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DPOs. One staff member of a village DPO, for example, expressed this issue as ‘a
government official that understands the importance of our full participation will not
stay long in their position’ (GPWD13). Consequently, disability activists are often
required to repeat their advocacy efforts from the beginning with new government
officials. This suggests that an institutional mechanism or regulation that enshrines the
centrality of this relationship is required to guard against bureaucratic changes.

8.4.3. Local Disabled People’s Organisation leadership

The leading roles of a local DPO from initiation to implementation of Desa Inklusi is the
most important factor that influences the success of this program. The ability of SIGAB
to establish trust with the Berbah sub-district government resulting in the adoption of
their Desa Inklusi programs by the sub-district government also suggests that leadership
by a strong and progressive local DPO is a crucial third factor supporting disabled
people’s full participation in village development.

This leadership has been identified by a disability activist as due particularly to their
access to support from international funders and NGOs, saying ‘Progressive disability
activism and strong DPOs in this region is also related to great financial and capacity
building support they receive from INGOs’ (DAY8). The support from international NGOs
that DPOs receive, as DAY8 suggests, helps them to strengthen their capacity to
advocate for the rights of disabled people to full participation in development.

International donors, international NGOs and global DPO networks that have
commitment to successful implementation of the UNCRPD by the State Parties have
implemented capacity building programs for local DPOs around the world (Meyers
2016). These programs aim to transform grassroots DPOs into human rights advocates
(Meyers 2016). The case study of Desa Inklusi underscores the importance of a
resourceful local DPO in playing an active role to support the local government and
community to implement disability inclusion in development.

Therefore three factors that support participation – the local government honouring the

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commitments made in legislation, a working relationship between the local government
and a local DPO, and a local DPO’s leadership, – together form the foundation for
effective inclusion. However in the case of the Desa Inklusi initiative in Yogyakarta,
participant observation at the Temu Inklusi 2016 event at Kulon Progo district,
undertaken as part of this study, suggests that these may not be systematically applied
or widespread in Indonesia. Participants at this event, which gathered disability activists,
government officials and academics from several Indonesian provinces to discuss
disability inclusion in Indonesia raised their concern about the fact that coverage of the
Desa Inklusi initiative extended to only a few districts in Yogyakarta. Yogyakarta is
renowned in Indonesia as a region with strong disability activism and progressive local
DPOs such as SIGAB. The Temu Inklusi 2016 participants expected that other regions in
Indonesia and the national government would adopt this disability-inclusive
development program. This expectation can be seen in the fifth recommendation for
Desa Inklusi implementation emerging from the event (Temu Inklusi event on 27 August
2016): ‘Pushing the commitment of the national and local governments across Indonesia
to replicate the model of Desa Inklusi through their policy and budgeting mechanisms.’

The statements of participants suggested, however, that in the absence of sustained and
widely available support for participation of people with disability as a collective,
representation of people with disability in government planning is mainly confined to
particular individual disabled people and occurs only in specific contexts. For example,
a disability activist participating in the event said, ‘The apparent success of Desa Inklusi
only happens at certain villages under the project of a DPO’ (DAY8). While models of
successful inclusion are available, including the case study examined in this chapter, the
capacity and resources of Indonesian DPOs vary greatly across the country.

Similar sentiments were expressed by two disability activists whose organisations also
reach the areas beyond Java, such as Banjarmasin and Kupang, saying, ‘I believe that
the difabel living in other areas, who do not receive any capacity building from our DPO
or any DPOs, have no access to participate even in ceremonial events held by the
government’ (DAY6) and ‘The strong ones [DPOs] that people usually see are those in
Java, and people have to see what’s happening in Kalimantan, Sumatra, Maluku and
others in which they [disabled people] are not empowered and organised’ (DAY8). The

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reflections of these disability activists indicate that challenges remain in Indonesian
regions beyond this one location.

A noted disability activist in Yogyakarta who has been actively playing various important
roles since the conception of the Desa Inklusi also raised several challenges in the
implementation of this initiative thus far:

First, the village government tends to assume that the Desa Inklusi programs belong
to SIGAB and that disability is an issue only under the division of people’s welfare
instead of the issue for all divisions in the village government office. Second, village
government administrators and the Desa Inklusi’s disabled actors or cadres have
limited and different levels of capacity so that continuous capacity building
programs are still required. Third, some people with disability in the village DPOs
still expect and prefer the charity or donation related programs to advocacy and
empowerment programs. Fourth, most board members of village DPOs are not
familiar with running organisations and rely solely on advice from SIGAB. Fifth, the
lack of accessible village transport and difficult terrain hampers people with
disability participating fully in village development activities (DAY1).

This reflection suggests that the issues identified relate to perceived ownership of the
program, the sustainability of capacity building, the interrelationship between welfare
and empowerment programs, and the right forms of support which are responsive to
local conditions. At this stage, a leading role by a resourceful local DPO like SIGAB
remains required to gradually empower the village government and villagers to have
ownership of and to sustainably run the program. However, despite the challenges and
limitations identified above, the Desa Inklusi (inclusive village) initiative presented in this
case study still provides a model for disability inclusion in village governance and
development. The positive relationship between a strong and well-resourced DPO such
as SIGAB, and government officials who are positively committed to working in
partnership is key to this model. Strong local DPOs are central to enabling the
meaningful participation of disabled people in state-led development. The case study
has also demonstrated the ways in which localised practice by a DPO with sufficient
resources and capacity and support from the government can ensure inclusion and
participation of disabled people in village development.

The analysis of the case study also suggests that the model developed and utilised in the
Desa Inklusi initiative provides a blueprint for practice that may be scaled up nationally

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if resources and commitment are available. A consistent nationwide approach to
supporting and strengthening DPOs, particularly in the regions, would encourage local
DPOs to play a central role in supporting participation of people with disability in state-
led development. Evidence presented in the case study demonstrates the significant
role that local DPOs play in empowering and building the capacity of disabled people to
participate in their village development processes including Musrenbang. However, as
addressed in the previous section, well-resourced and well established DPOs do not exist
in all regions. Nevertheless, this particular finding about the significant role of support
from local DPOs contributes to advancing an understanding that DPOs can drive
participation of people with disability and affect positive change, where disabled people
are not just development outputs, but also active agents of development.

8.5. Conclusion

The key findings in this chapter demonstrate the possibilities for disabled people’s
inclusion and participation in state-led development. The foundations for these exist,
but to a limited extent and in localised contexts. Participation occurs in certain areas
that are endowed with strong and progressive DPOs, and an approachable leading figure
in the government who is committed to supporting participation. The lesson learned
from the Desa Inklusi (inclusive village) initiative, demonstrates important factors for
success, such as local governments honouring the commitments made in relevant
legislations, effective and working relationship or synergy between the local
government and DPOs, and leadership by local well-resourced DPOs with funding
support from INGOs and government.

The Desa Inklusi (Inclusive Village) project presents a unique initiative instigated by
SIGAB at Sleman Regency of Yogyakarta, demonstrating the successful operation of
DIB’s inclusive practice at the village level. Given the importance of strong DPOs to
meaningful participation of people with disability as demonstrated through the case
study, this chapter shows how participation of people with disability can be achieved
and at the same time provides a scalable example of how it could be operationalised

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nation-wide particularly at the regional levels if the required resources and commitment
from both government officials and local DPOs are available.

This chapter demonstrates that the foundations to enable inclusion and participation of
people with disability that are key to DIB implementation processes currently exist,
although to a limited extent. This localised good practice provides a model for a
nationwide approach by the government to support local DPOs and their work in laying
the groundwork for inclusion in Indonesia. The following chapter (Chapter Nine) will
bring the thematic concepts in this chapter together with those developed in the
previous findings chapters and discuss the broader issues they raise in answering the
research questions driving the thesis.

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 CHAPTER NINE
DISCUSSION

This thesis set out to examine Disability Inclusive Budgeting (DIB) as an initiative of the
Indonesian government, and to interrogate its potential to realise the rights of persons
with disability. The thesis interrogates the following: the conditions that allowed for the
emergence of DIB at this particular moment in Indonesia and the extent to which its
implementation has progressed; the underlying challenges and opportunities to
achieving DIB and what contributes to these; and what DIB means to people with
disability as well as what they expect or demand this policy achieve. This chapter
presents an overall discussion or synthesis of the findings presented in the previous
chapters and provides a number of key insights that further answer the thesis’s research
questions as set out in Chapter One.

This chapter is structured into three sections. The first section argues that the rights-
based approach that underpins DIB is not an entirely new concept, but that the
implementation of this framework in Indonesia is generally limited to transforming
international human rights legislations into domestic policies. The second section
identifies a disjuncture between policy and practice where policy intention does not
meet expectations, arguing that these are factors that create complexity for DIB
implementation. In relation to unmet expectations, the third section develops a new
way of thinking about ‘disability citizenship’ based on the Indonesian disability activists’
language and concept of difabel. Rethinking disability citizenship for the Indonesian
context highlights the significance of the concepts of rights, obligations, recognition,
legitimacy for a form of citizenship defined by Indonesian disability movements
themselves, which demands comprehensive inclusion and full participation in
development. This final section concludes with a reiteration of key insights from this
thesis and their implications.

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9.1. Disability Inclusive Budgeting and a rights-based approach: Old idea, new
home

The emergence of DIB is seen as due, in large part, to external influences that have
demanded a rights-based framework to disability policy in Indonesia, even though
rights-based frameworks are not new in other parts of Indonesian policy-making. DIB
emerged as Indonesia’s response to both the inadequacy of previous disability policies
and the international trend towards a rights-based approach to disability, particularly
following the ratification of the UNCRPD in 2011 and the adoption of the SDGs in 2015.
Domestic disability policies prior to DIB achieved limited success in implementing these
two instruments. Previous policies, including the National Disability Action Plans and the
National Action Plan on Human Rights (RANHAM) were ineffective mainly due to a lack
of regulatory support and clarity around the implementing mechanisms as outlined in
Chapter Five.

There are various understandings across different countries of what constitutes a rights-
based approach to development. In response to this lack of clarity, the International
Human Rights Network (2005) compiled five legal principles by which to assess whether
a country has adopted a rights-based approach, including a) expressed application of
the international human rights framework; b) empowerment of rights holders; c)
participation in one’s own development; d) non-discrimination and prioritisation of
vulnerable groups; and e) accountability of duty-bearers to rights-holders. The
Indonesian government has generally been very responsive to the first principle, the
expressed application of the international human rights framework, by adopting
international treaties into domestic legislation. For example, a national human rights
framework was established under Law No.39 of 1999 on Human Rights and by turning
into laws the various Human Rights conventions that Indonesia has ratified (Lembaga
Studi dan Advokasi Masyarakat (ELSAM) 2015).

In fact, the human rights approach itself is not a new concept in Indonesia, with similar
ideas having been a norm in society since the colonial era. The colonial and post-colonial
eras witnessed how the concepts of the rights approach emerged and evolved in
Indonesia (Manan 2001). During the colonial period, for example, Indonesian founding

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fathers promoted the concepts of civil rights and equality to be free from the oppression
and racial discrimination imposed by the colonial power (Manan 2001).

Recognition for human rights was then established in Indonesia’s State Constitution,
UUD 1945, which existed prior to the UN Universal Declaration of Human Rights of 1948.
Following Indonesia’s independence in 1945, political rights to associate and to form
political parties and freedom of speech were promoted among Indonesian elites and
politicians. Although human rights abuses were not absent during the Sukarno era,
human rights were more obviously repressed over the next two decades under
Soeharto’s New Order regime. Upon the fall of Soeharto’s regime, there was a revival of
human rights with the establishment of the National Commission of Human Rights and
the enactment of Law No.39 of 1999 on Human Rights (Manan 2001).

The rights approach to disability in Indonesia was influenced by both the political
situation in Indonesia and the international trend of a rights approach. As set out in
Chapter One, stronger civil society in Indonesia also emerged with the fall of President
Soeharto, with all civil society organisations benefiting from greater freedom to voice
their concerns. DPOs seized this opportunity and capitalised on their networks with
international organisations to introduce the language of human rights into their
discourse. The global disability movement’s shift to a rights-based approach in the late
1990s influenced disability activism in Indonesia (Dibley and Tsaputra 2019). In turn,
Indonesian disability activists influenced the human rights approach to disability by
lobbying the Indonesian government to adopt International Disability Rights
instruments. The rights-based language and the concepts of disability inclusion and
participation introduced and promoted by International instruments such as the Asia
Pacific Decade of Disabled Persons, the Incheon Strategy, the UNCRPD and the SGDs all
provided greater momentum for Indonesian disability activists to shape their own
agenda into a broader disability rights movement whose aim is to seek to influence
government policies through its advocacy.

However, disability was a late addition to the Indonesian human rights framework, only
substantially moving onto the human rights policy agenda from the time of ratification
of the UNCRPD in 2011. Prior to this time, in both policy and practice, disability was
primarily considered a social welfare issue (see section 5.1.1. and 6.1.1.). The laws
before ratification of the UNCRPD recognised the basic rights of disabled people as

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Indonesian citizens, such as in education and employment. However, the fulfillment of
these rights was mainly driven by a mentality of paternalism and benevolence. For
example, disabled people were guaranteed by the 1997 National Disability Law to enjoy
primary and secondary education, but only at segregated special schools rather than as
included in mainstream settings. People with disability were also guaranteed by the
same law to access employment using a special quota system, requiring one per cent of
a company’s employees to be disabled people. However, the law did not require the
employers to provide support and accommodations for their disabled employees. These
partial or conditional measures resulted in further marginalisation of people with
disability, let alone ensuring the fulfilment of their basic human rights.

Under a range of influences, including international pressures and the push from
disability movements, the Indonesian government finally ratified the UNCRPD in 2011
and enacted the rights-based disability law in 2016. The human rights approach,
enshrined in the UNCRPD, adopted by the Indonesian government through Law No.19
of 2011, is radically different from human rights ideas in previous policies. This
difference is seen in the law’s concept of disability inclusion which emphasises the
participation of disabled people and the obligation of the state to take measures and
steps to ensure the fulfillment of the rights of people with disability. DIB, which emerged
in response to the ratification of the UNCRPD and the adoption of the SDGs, also
represents a policy that addresses disability in a rights framework. Not only does it take
a rights perspective on disability, it also requires the Indonesian government to integrate
actions on disability into development across all sectors, inscribing or embedding the
inextricable link between disability and development.

The importance of the rights framework is less established in government policies and
legislation, however, and the enforcement of human rights in Indonesia has remained
problematic due to various complicated political, social, economic and cultural barriers
(Besar 2011). DIB, with its rights-based underpinning principles, but without the
required resources or a mechanism of accountability for shared responsibilities (as
discussed in Chapter Six), is at risk of becoming another policy that establishes rights in
word but not in practice. Therefore, while the idea of human rights is familiar idea in
Indonesia, its application to disability in development is essentially new. This novelty has
created challenges in its implementation which has limited its potential to dramatically

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change the disability landscape in Indonesia. As explored in the next section,
disjunctures between the new policies and the old ways of doing things, coupled with
policy intention that does not meet the expectation of disabled people, add to the
complexity of the implementation of DIB as a rights-based policy.

9.2. Disability in development: Disjunctures between policy, practice and

expectation

As shown in Chapter Five, DIB employs a human rights-based approach to disability that
aims to promote participation of disabled people via development into the mainstream
life of the nation. Thus, in the current Indonesian context, DIB is a possible mechanism
where disability and development meet. However, the bureaucratic and cultural
landscapes where disability and development come together throws up a range of
paradigmatic and implementation challenges to achieving DIB’s full potential, as
discussed in Chapter Six. This section discusses these challenges as constituting a
disjuncture between policy and practice, and a policy intention that does not meet the
expectations of disabled people.

9.2.1. Paradigm shifts in question: Policy and practice

To align with the normative international shift towards a rights-based approach, the
Indonesian government has claimed that there has already been a paradigm shift from
social welfare to rights-based approach (MoNDP 2015). As identified in Chapter Five, the
National Disability Law No.8 of 2016 and DIB implementation guideline both refer to this
paradigm shift. However, while this paradigm shift may have been laid down in
Indonesian government policies, the findings of this study suggest that this is not
reflected in practice.

The idea that disability is only a social welfare issue, which has long informed the
Indonesian government’s approach, has been highlighted in this study as still visible in
both thinking and practice. As suggested in the discussion of paradigmatic issues in
Section 6.1.1., the lack of awareness evidenced among government elites responsible
for implementing DIB may partly explain the continuing dominance of the social welfare

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approach in addressing disability issues. Section 6.2. demonstrates that the views of
government officials and the range of government programs being delivered by
government is yet to reflect the change in policy rhetoric, with a continued focus on
welfare programs. Furthermore, because disability continues to be seen as a social
welfare issue, MoSA, whose primary function for many decades has been the delivery
of social welfare programs as the sole response to disability, problematically remains
the ministry responsible. The reappointment of MoSA, in the absence of a significant
overhaul of its underpinning principles and operatives, means that, as the lead Ministry
in coordinating disability responses, old paradigms persist. This undermines the
effective implementation of the intention of DIB to make disability a shared
responsibility among ministries. MoSA’s past failure to implement the National Disability
Action Plan, its unchanged ethos and its equal position in the hierarchy of ministries also
casts doubt on the capacity of this ministry to effectively lead disability mainstreaming.

In addition to these structural and operational strictures, the MoSA poverty reduction
programs that include people with disability as recipients, do not address the systemic
barriers preventing disabled people participating in the development of those very
programs. Katsui (2008) argues that poverty is a central focus in discussion about
disability in development in the global South because the rights commonly fought for
were basic rights such as food, clothes, shelter and medications. Because poverty
remains a major barrier for disabled people in the global South (Yeo and Moore 2003,
Katsui 2008a), social welfare programs remain important for poor disabled people in
Indonesia. However, as has been demonstrated in Chapter Six, poverty reduction
programs that targeted disabled people as recipients were designed without
considering the lived experience of people with disability. For example, the evidence
presented in Section 6.1.2. regarding social protection programs that include people
with disability shows that not all poor disabled people can access poverty reduction
programs because the Indonesian government-determined general criteria for living in
poverty fails to take into account their different circumstances, including the higher cost
of living faced by people with disability. Poverty reduction programs remain very
important for disabled people because there is an established inter-relationship
between poverty and disability. However disabled people have called for poverty
reduction programs that are more sensitive to their needs, circumstances and lived
experience, and which they argue can only be achieved through their greater

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participation in formulating, implementing and evaluating those programs. While this is
required by DIB’s principles the existing implementation mechanisms are not sufficient
to ensure the expected participation.

To sum up, the approach that government currently takes in practice towards disability
falls short of implementing the rights framework, as required by legislation such as Law
No.19 of 2011 on the UNCRPD Ratification and Law No. 8 of 2016 on Persons with
Disability. This limitation is writ large in the investigation of the implementation of the
government’s flagship policy of DIB presented in this thesis. A lack of Implementation
leadership by MoSA, a continued emphasis on welfare support and poverty reduction
that is ineffective, and a lack of inclusion of people with disability have been shown to
be some of the key challenges to achieving full implementation of DIB. These
contradictions between the rights-based framework articulated in legislation and
policies and the continuing dominance of the welfare approach represents a disjuncture
between policy and practice.

9.2.2. Policy intention and expectation

As a disability mainstreaming policy, DIB primarily aims to include disability into existing
development programs. However, without clarity on what the priority areas for people
with disability are and how to ensure participation of disabled people at all phases of
DIB implementation, challenges will remain. Chapter Seven demonstrates that disabled
people have a much more expansive vision for DIB, beyond the government’s stated
policy objectives. The expectation of disabled people for DIB’s capacity to address their
needs comprehensively, including their needs for both specialised and mainstream
programs, as well as for their full participation in DIB processes cannot yet be ensured
by DIB mechanisms. However, it does not necessarily mean that these expectations
cannot happen in practice. A localised good practice of Desa Inklusi explored in Chapter
Eight demonstrates a possibility for these expectations to be met.

In terms of the priority areas that DIB must address in budget allocation, disabled people
stress the importance of a twin-track approach, meaning addressing specific needs of
disabled people and disability mainstreaming concurrently. While they welcome

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mainstreaming of disability into existing programs, they also highlight the under-
resourcing that remains with respect to specialised disability programs. This issue of
limited resources remains an area of key contention since the government’s intention
for DIB is not to develop new programs that may necessitate increased budget
allocation. Disability inclusion in development therefore requires that disability-specific
programs should be implemented along with mainstreaming programs because of the
unique nature and characteristics of disability (Thomas 2005, Irwanto et al. 2010,
Schulze 2010, Groce et al. 2011). If DIB mainly intends to focus on mainstreaming needs,
the specific supports required for the participation of disabled people, such as the need
for assistive devices and therapeutic supports, are easily overlooked. DIB, in the view of
the informants in this study, should form one major arm of a larger program of supports.
Without access to specialist disability supports as a complementary social care program,
disabled people will continue to be locked in their homes and locked out of education,
employment, religious observance and the range of other citizenship rights which are
enjoyed by their non-disabled peers. Indonesian disabled people in this study have
clearly identified that a twin track approach would enable DIB to realise its own
principles of achieving greater participation of disabled people in development.

In the context of the participation of disabled people in development, people with

disability in this study have consistently argued for agentic engagement with DIB: that
is, to enable them to be active agents rather than merely the recipients of development
programs. Disabled people perceive that contributing to State-led development is part
of their citizenship rights, an issue which will be taken up in more detail in the third
section of this chapter. Disabled people’s demand for active agency in development, and
partnership with government in all phases of development, demonstrates a desire on
the part of Indonesian disabled people for a different kind of disability citizenship. DIB
does recognise the need for participation, but it lacks clear strategies to ensure full
realisation of this aim. In this way, what DIB sets out to achieve does not meet disabled
people’s expectations. DIB implementation needs to address this unmet expectation in
order to realise its main functions, as discussed in Chapter Five, primarily to offer greater
scope for participation of people with disability in development processes and thereby
to achieve the policy goal of Disability Inclusive Development.

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Nevertheless, there are examples of ways that practice can be different and adapted to
meet the stated goals of the policy in practice. Chapter Eight’s case study on the Desa
Inklusi program (disability inclusive village), which was initiated by a well-resourced local
DPO, SIGAB, demonstrates a best practice example of disabled people being involved in
village development planning and budgeting processes, and in actively shaping the
programs that would benefit them and their community.

In the Desa Inklusi program, SIGAB’s leadership role in educating both disabled people
and government officials about the principles of the rights-based approach, and the
support required for disabled people to participate in village development, was
demonstrated to be crucial to the program’s success. To strengthen cooperation with
government institutions, SIGAB brought together village, sub-district and district
governments to identify opportunities and challenges in expanding the inclusive village
programs. This range of activities undertaken by SIGAB as part of the Desa Inklusi
program represents a uniquely innovative partnership and knowledge exchange
between civil society organisations and government. This kind of partnership is
important for effective formulation and implementation of government policies (Chaney
2017). The key to this best practice model is the role of local DPOs, with access to
adequate resources and strong partnerships with government. This has been
overlooked in the literature, which largely argues that a rights-based approach to
disability in development requires state obligation to secure the human rights of its
citizens (Katsui 2008a, Stubbs 2009) and focuses more on the need for inclusion of
people with disability than on the mechanisms that can enable such inclusion (Yeo and
Moore 2003, Coe and Wapling 2014).

Critically, this thesis finds that resourcing and supporting DPOs to partner with
government magnifies the impact of all stakeholders in achieving disability rights
through government initiatives such as DIB. However, as the findings in Chapter Six
(section 6.1.1) suggest, government officials continue to cite insufficient resources and
competing priorities as the main factors preventing full implementation of emerging
rights-based disability policies such as DIB. This finding suggests that a change in focus
on priorities for support in this context can significantly contribute to fulfilling the rights
of people with disability. As the example of Desa Inklusi initiative outlined in Chapter
Eight demonstrates, DPOs have proven instrumental in educating about and supporting

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the implementation of the rights-based approach to disability in development. If the
government is to take seriously its commitment to implement DIB, then support for
disabled people and their representative organisations to take their rightful role as equal
partners, if not leaders of the process, needs to be given priority.

To conclude this section, it should be noted that previous literature has discussed
challenges to the implementation of a rights-based approach to disability in
development in the global South. For example, Katsui and Kumpuvuori (2008) and Purcil
(2016) found complexity and diversity of disability issues, lack of reliable data on
disability, persistence of a charity approach, a lack of resources and low prioritisation
for disability as several of the key challenges. These findings have been confirmed by the
present study. In addition, this thesis makes a further and original contribution to
understanding challenges in disability mainstreaming into development in the global
South by presenting new empirical data that suggests a disjuncture between a new
rights-based policy and the dominance of welfare focused practice, and policy intentions
that do not meet the expectations of disabled people, as well as opportunities that can
make the expectations realised.

9.3. Inclusion in development: Difabel citizenship?

In the global North conceptualisation of the human rights-based approach to disability

in development, inclusion and participation of disabled people as rights holders are
interrelated principles (Albert and Hurst 2006, Katsui 2008a). The findings of this study
suggest a new way to conceptualise participation of disabled people in development
within the framework of disability citizenship, drawing on the unique Indonesian
context. This model goes beyond the global Northern dominated concepts of
participation and equalisation of rights, and rather is forged from the alignment of
disability rights with inclusion in development, based in Indonesia’s unique ideology of
nation building. The concept of difabel is used by Indonesian disability activists to claim
their status as valued citizens who are ‘able’ to make contributions as valuable as others
although in different ways. Citizenship in this context is expressed by disabled people in
this study through their awareness that the rights of difabel people also extend to
citizenship related rights in which, as Indonesian citizens, they have ‘ability’ to fulfil their

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national obligations. This unique Indonesian difabel citizenship draws attention to the
importance of the notions of rights and obligations, as well as recognition and legitimacy
of disabled people’s participation in development, the inseparable interconnections
which make up disability citizenship in Indonesia. This understanding of Indonesian
difabel citizenship contributes to literature on disability, development and citizenship by
proposing a new global Southern model for inclusive disability citizenship.

9.3.1. Rights and obligations

People with disability in this study expect that the implementation of DIB should not
only fulfil their basic rights – such as the rights to education, employment, health, or
those rights enshrined in the UNCRPD and the new disability law in Indonesia – but they
also envision DIB as empowering them to fulfil their rights as citizens to contribute to
state development. In other words, DIB is seen by these disabled Indonesians to provide
a unique opportunity for difabel citizenship. Their expectations to contribute and then
to be recognised as valued citizens because of their impairments add insight to debates
regarding the relative weight of rights and obligations of citizenship and the
particularities of the Indonesian context. Indonesian people with disability, like the
Indonesian citizenry more broadly, perceive contributing to nation building as their
obligation as citizens. Disabled people in this study expect that DIB should provide
opportunities for their inclusion in development to enable them to fully exercise these
citizenship rights and obligations.

The conceptualisation of rights and obligations is particular to Indonesia. The

inseparable relationship of hak dan kewajiban (rights and obligations) of citizens in
Indonesia is determined by the State through the Constitution. Indonesia’s State
Constitution, UUD 1945, stipulates and guarantees the rights and obligations of
Indonesian citizens from article 27 to article 34 (Yasin 2009). Of the several citizenship
rights and obligations stipulated in the Constitution that need to be kept in balance,
contribution to nation building is where rights and obligations converge. Nation building
in this context encompasses a wide range of development activities and processes,
conducted to make Indonesia a great and ‘developed’ country in the spirit of nationalism
and is both a right and an obligation of citizens.

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In the human rights framework introduced in the global North, rights and obligations as
citizens are two separate concepts that dichotomise citizens as rights holders and
governments as duty bearers (Stubbs 2009). However, if States are considered as the
only duty bearers, as Stubbs (2009) goes on to explain, then the implementation of
human rights is mostly dependent on national politics, government priorities and
stability. This concept of citizens’ rights and obligations also has a more limited remit. It
is grounded in the idea of a social contract and reciprocity, with the implication that
rights entitlement is based on contributions made by citizens (Waldschmidt and
Sépulchre 2019).

Disabled people in this study demand recognition as both rights holders and duty
bearers. In claiming their rights to citizenship, Indonesian disabled people
simultaneously emphasise their duty to actively engage and lead development activities.
Such activities vary from participating in the planning of local development through
bottom-up development consultation meetings such as the Musrenbang, down to the
lowest level of neighbourhood development such as Gotong Royong as explored in
Chapter Seven (see section 7.2.1). Their demand for leadership in development reflects
the Hak dan Kewajiban (rights and obligations) of Indonesian citizens that the State
Constitution has guaranteed and determined. In this context, there is no reciprocity
between rights and obligations as understood in the citizenship perspective of the global
North, rather, there is a convergence of rights and obligations to contribute to nation
building. Furthermore, people are identified as a ‘good Indonesian citizen’ when they
put obligations to the nation before their individual interests or ‘mendahulukan
kewajiban dari kepentingan pribadi’ (Alim 2010, Nadziroh 2016).26

Why do disabled people in this study want to become duty-bearers? The findings in this
thesis (section 7.2) suggest two reasons: their desire to be ideal citizens and to be seen
as capable, as reflected in their identity as difabel. As explored in Chapter Three, people
with disability in Indonesia introduced and promoted the term difabel in an effort to
counter political and structural disablement, and to demand recognition as valued and
capable citizens. Difabel citizenship is in line with and adds to Nusbaum’s and Sen’s
capabilities approach (CA) by expanding the capability concept to include collective
capability of a group and which argues that capable human beings are those who have,

26
Please see the glossary for the English translation of the Indonesian phrases.

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among various skills, the ability to attribute to themselves a responsibility to contribute
(Dubois and Trani 2015). This thesis contributes to the citizenship literature via the
notion that people with disability in Indonesia conceptualise their rights and obligations
uniquely and differently to global Northern perspectives, and therefore adds to
understanding of disability citizenship beyond the dominant approaches identified with
global Northern scholarship.

9.3.2. Recognition and legitimacy

For people with disability in this study, participation in DIB also represents an
opportunity for full recognition and legitimacy as valued citizens capable of claiming
their rights and fulfilling their responsibilities. Recognition is understood as ascribing a
positive status to individuals and/or groups (Honneth 1995, Ohlström et al. 2011).
Recognition is also a concept used in relation to struggles against injustices and the
experience of disrespect (Honneth 1995, Ohlström et al. 2011). In relation to disability,
Frohmader and Meekosha (2012) suggest that denial of recognition constitutes a form
of disrespect that can harm disabled people’s positive understanding of themselves.
Disability literature also addresses the role of recognition in enabling the participation
of disabled people (Lister 2007, Lorenzo and Coleridge 2018). In this study, the demand
of disabled people for societal acceptance as equals who have credibility and authority
to represent themselves and their interests in development processes is understood as
an expectation for recognition. This demand is in line with the difabel concept in which
all God’s creations are perfect and are able to develop their potential and to claim their
unique status as Indonesian difabel citizens (see Chapter Three). Legitimacy, in relation
to citizenship, comes from policies that position individuals and groups as integral,
partial or excluded members of their local, state, national and global communities
(Gilson and Depoy 2014). In a similar vein legitimacy, as expected by people with
disability in this study, is about acknowledgement within state-led development policies
and regulations that endorse disabled people as central and necessary stakeholders in
development.

The recognition that disabled people in this study demand indicates their demand to be
valued as citizens in contributing positively to their society and nation, and as citizens

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able to represent themselves and their interests by drawing on their knowledge and
experience of disability. Such a demand defines difabel citizenship. Indonesian disabled
people identify themselves as difabel citizens in preference to the global Northern term
‘disabled’ because they desire recognition of their varied abilities before their
impairments (Maftuhin 2016). Disabled informants in this study demonstrated this in
their use of such expressions as diuwongke and digunakan (to be treated as humans and
to be useful), where they used these terms in discussing the low expectations of society
towards people with disability. For example, a village disability activist used the term
diuwongke, meaning to be treated as full human beings with recognition and
appreciation (Affandi 2015), to demonstrate her rejection of the general perception
towards disabled people as social burdens in society. A visually impaired villager
expressed his view against common perceptions that disabled people are incapable, by
using the term digunakan or ‘being useful’ to describe himself as having abilities and
values that can benefit other people (see section 7.2.2). As discussed in Chapter Seven,
disabled people want to be treated as full human beings (diuwongke), regardless of their
disability, background, appearance, and other attributes or distinguishing features.
Indonesian people with disability have strongly voiced their desire in this study to be
engaged actively in community and development activities on the basis of their own
identities as difabel citizens. People with disability understand this kind of recognition
as central to their desire to fulfil their rights and responsibilities as citizens.

Because of their impairments and various barriers, disabled people in Indonesia have
traditionally been considered incapable by society and even by their own families
(Irmansyah et al. 2009, Adioetomo et al. 2014) and thus there are significant
expectational and attitudinal barriers to their participation in national building projects
and processes in the way that other Indonesian citizens are expected and supported to
do. The term difabel arose as an attempt by Indonesian disability activists to counter the
hegemony of this disablement, and to introduce a more authentic statement of their
contribution. By using and promoting the difabel concept, people with disability claim
recognition as citizens with positive identity and to participate in development and
nation building in Indonesia on their own terms.

As addressed earlier in this chapter, the case study of Desa Inklusi (Inclusive Village)
presented in Chapter Eight shows the potential already developing toward this goal. It

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details the ways in which a local DPO built recognition within their community for their
fellow disabled villagers by organising inclusive trainings for all villagers together, with
and without disability. This disability-inclusive training program is a model for building a
sense of recognition towards disabled people. The case study suggests that disabled
participants can be recognised for their capacity to improve their skills and to engage
actively and shape their village development activities. Although showing capacity
seems to be a precondition for disabled people to be recognised in this context,
achieving this kind of recognition is crucial to ensure disabled people’s participation, as
the model of Desa Inklusi demonstrates. This recognition also works to make the
community and government aware that disabled people want and can fulfil their
responsibility as citizens.

The kind of recognition that disabled people demand, and the importance of such
recognition to their participation, reveals new insights for what is required to support
their participation in state-led development. This kind of recognition goes beyond the
scope of their rights-mainstreaming in development policies. To support full
participation of people with disability in all processes of DIB implementation, this study
has revealed that recognition of disabled people’s capacity and knowledge on disability-
related issues is a key underpinning to government success in implementing DIB.

Disabled people also see legitimacy as linked to recognition in the project to ensure their
participation. Disabled people in this study want their participation in all levels of
decision making relevant to state led development processes to be guaranteed in the
form of official statements or mandates in government policies and regulations (see
section 7.2.2). This expectation can be understood as claiming legitimacy. Although the
effect of legitimacy can be positive or negative, in this context legitimacy can position
disabled people as an integral part of state-led development processes. This legitimacy
has the potential to enshrine the confidence among disabled people that they can claim
their rights to participate because it requires government not just to allow, but rather
to institutionalise their participation in the planning, implementation and monitoring
processes. Recognition and legitimacy are inter-twined as demonstrated in the case
study on Desa Inklusi (see section 8.1). Participation of disabled people in the Desa
Inklusi is recognised by village government officials and village community as
progressive and just and legitimises the village regulations. The case study also shows

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that the achievement of both recognition and legitimacy is both dependent on and
enables the successful participation of disabled people in village development. To sum
up, recognition and legitimacy are critical not only for the participation of disabled
people in DIB and broader state-led development, but are also integral to the
achievement of a uniquely Indonesian difabel citizenship that calls for a radical change
in understanding and viewing people with disability as citizens.

9.3.3. A unique disability citizenship

Disabled people in Indonesia demand recognition of their leadership in development as

opposed to being only the recipients of development programs. This demand is based
on their assumption that they are active agents in nation building as both a right and an
obligation. They also have shared in this study their visions for recognition and
legitimacy for their participation in DIB and all State-led development processes.
Understanding these demands through the emerging lens of difabel citizenship reveals
that the balance between rights and obligations for Indonesian disabled people is
centred on fulfilling national obligations which are not in return for or in exchange for
rights, but part of their realisation. The disabled people who offered their views in this
study have made it clear that recognition and legitimacy are critical to institutionalise
their difabel citizenship which in turn will ensure that they are active agents in
development.

Such citizenship is unique because Indonesian disabled people have differentiated

themselves from notions of disability citizenship in the global North by identifying
themselves as difabel, and this same uniqueness extends to their ideas of citizenship,
rights and obligations. While disability citizenship in the global North covers such issues
as ‘access to social rights, human rights, political engagement, participation in the
community, transition to adulthood, sexual rights etc’ (Sépulchre 2017: 949), difabel
citizenship departs from these and extends a right and obligation to become agents of
development. While this may operate as an aspirational ideal in Indonesian culture and
nationhood, disabled people in this study reserve their right to aspire to become ideal
Indonesian citizens just as their non-disabled brothers and sisters do, and to do so

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because they are difabel, not in spite of this. This conceptualisation of difabel citizenship
challenges the common deficit-based perception of people with disability.

Disabled people do not want only to be the recipients of development, but rather to
participate meaningfully in development and to shape its agenda. The implementation
guideline of DIB in Indonesia does require the participation of people with disability in
its implementation mechanisms. Disabled people in this study see this participatory
element in DIB as their opportunity to meet their obligations, but they demand more
than a limited involvement in the Musrenbang, but rather active involvement at a higher
level of decision-making. This claim in effect surpasses that which is extended to other
Indonesian citizens and demonstrates the unique form and expectations of difabel
citizenship.

This expectation, however, may be very difficult to realise because the system and the
bureaucracy of state-led development itself works against the meaningful participation
of all citizens. Thus, the idea of full inclusion of people with disability in all levels and
forms of development practices enshrined in the UNCRPD risks being purely
aspirational. Specifically, for disabled citizens, meaningful participation also entails the
provision of the accessibility and other necessary supports – entailing in itself a paradigm
shift in thinking about disability practice. As addressed in Chapter Seven, the inclusion
of disabled Indonesians in practice is generally only in the form of limited participation
in the Musrenbang without the required support and access to participate, and without
participation opportunities in higher level processes.

Recognising and valuing the different and unique capabilities and contributions that
disabled people can make to development would in fact be the real paradigm shift talked
of in Chapters Five and Six. The unique difabel citizenship being claimed by disabled
people offers the opportunity for the Indonesian government to harness its disabled
citizenry to be leaders in the fundamentals of disability rights realisation, and to work in
partnership with the government to achieve disability inclusive development as
required by the UNCRPD and the SDGs. This not only means shifting how government
understands disability in the rights framework but also rethinking inclusion of disability
and people with disability in development. Understanding disability citizenship in the
global South cannot just draw from the concept as it originates in the global North, or
normative ideas of citizenship drawn from Euro-American scholarship. Indonesian

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disabled people, in their choice to call themselves difabel, are already claiming their
rights to their unique identity, and, as revealed by this thesis, they are seeking to assert
this identity in conjunction with claiming their citizenship and in their demand for
leadership in development activities and policies including DIB. Designing strategies for
ensuring the inclusion of Indonesian disabled people as active agents in DIB processes
should therefore be against the Indonesian concept of difabel citizenship.

9.4. Conclusion

This chapter has discussed the findings of this study that examine the potential of DIB
for realising the rights of persons with disability in Indonesia. This study provides insights
into the policy mechanism which a government in the global South can use to implement
a unique identity budgeting approach from this region. Further, it synthesises the
policy’s opportunities for success and its downsides. Responding to the three central
research questions presented earlier, the overall findings of this study suggest that DIB’s
emergence is largely a domestic response to the international shift to a rights approach
to disability and sheds light on the motivations for the Indonesian government to adopt
this policy following the UNCRPD ratification and the SDGs adoption. The policy
responses of the government to these international instruments in the form of the
introduction of DIB in Indonesia prompt the question as to whether this government
initiative represents genuine progress. While the thesis has argued that DIB has
progressed particular aspects of domesticating international rights and an inclusion
framework in national policies, what has also been uncovered are the challenges that
arise from the lack of clear priority areas and the failure to embed strategies for
ensuring the participation of disabled people at all phases of DIB implementation. As
Chaney cautions, such responses may constitute ‘little more than an exercise in symbolic
politics conducted by state elites’ (Chaney 2017: 418).

There is a risk that a narrow conceptualisation of the rights-based approach as a legal or

policy formalisation may become an end to itself without complementary and concrete
practice when the policy and legal framework change is the only main goal (Katsui 2008).
DIB has been implemented to only a limited extent due to a disjuncture between policy

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and practice; and a policy intention that does not meet the expectations of disabled
people demonstrates the lack of recognition by the Indonesian government of what
difabel identity means to people with disability. While Indonesian disabled people are
calling for difabel citizenship, government disability mainstreaming policies remain
wedded to the discourses of disability rights that have strongly influenced the UNCRPD
(Meekosha and Soldatic 2011).

The government intends that DIB be a tool for disability mainstreaming in development
programs, whereas disabled people expect this policy to enable them to be active agents
in development. This demand for leadership in development suggests that people with
disability call for recognition of their unique difabel citizenship. Recognising and valuing
this difabel citizenship represents a true paradigm shift that will require the government
to incorporate strategies to alter stereotypical stigma and low expectations of disabled
people as well as ensuring the availability of the supports needed for full participation.

Accommodating and promoting this unique form of difabel citizenship will also serve as
an opportunity for the Indonesian government to showcase that disabled people can be
leaders in development as required by the UNCRPD and the SDGs. The potential for best
practice has been demonstrated in this study in the case study on Desa Inklusi which has
shown that disabled people through their DPOs do not only help with the duty of
government, but also enable the village government to understand and integrate
disability rights from the perspective of disabled people themselves. Disabled people as
integral to this process have the opportunity to better understand and influence
government processes, including complex planning and budgeting. This process in itself
has a capacity building element as a form of knowledge exchange between the
government and people with disability. The experiential knowledge and expertise of
people with disability is critical to inform DIB policy direction in the future because full
participation of disabled people and their DPOs remains the key to effective
implementation of a rights-based approach to disability in Indonesian development and
beyond.

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 CHAPTER TEN
CONCLUSION

This thesis is an interdisciplinary research involving disability, development and

citizenship studies to enquire into the potential of a Disability Budgeting approach in the
global South for realising the rights of persons with disability in Indonesia. This work is
the first to focus on DIB as a key government initiative in Indonesia for disability inclusion
and mainstreaming into development through budgeting policy. Through investigating
DIB in Indonesia, this thesis contributes to providing insights on what disability
budgeting looks like in a global South country like Indonesia and how it is implemented.

This thesis draws out three major findings that address the research questions explored
in this study. First, DIB emerged as the initiative of the Indonesian government to
respond to both international instruments such as the UNCRPD and the SGDs that
require them to implement disability inclusive development, and to the failure of
previous welfare-focused approaches to disability in implementing the rights-based
approach. Second, there remain underlying challenges that contribute to slow progress
in achieving DIB’s aims and full potential related to paradigmatic and implementation
issues, but there are also some factors that may improve its implementation associated
with supporting the leadership role of local DPOs to partner with the government and
enabling full participation of disabled people. Third, to disabled people in this study, DIB
means more than just a disability mainstreaming policy, rather their vision is for this
policy to enable them to become active agents of development – exemplified in their
desire for difabel citizenship.

The analysis of different perspectives among grassroots disabled people, disability

activists, and government officials, as well as the relevant government policies and
legislation, reveal that disability mainstreaming through DIB is not enough to ensure
rights realisation without clear priority areas and the strategies for ensuring the
participation of disabled people at all phases of DIB implementation. These insights offer
deeper understandings of the possibilities and challenges in disability inclusion in

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Indonesian State-led development. Together these findings help to understand
government policy responses in the global South to international trends that promote
the paradigm shift from charity to a rights-based approach. These findings also highlight
the importance of participation of disabled people in all phases of development planning
and budgeting via the provision of all required support needed for participation.
Through this study, the findings have shown that local DPOs play an important role in
building the capacity of grassroots disabled people to participate and to ensure disabled
Indonesians partner with government to implement disability inclusion in development.

The first section of this chapter describes how the thesis contributes to relevant debates
in disability, development and citizenship literature and to emerging studies on disability
budgeting in the global South. The second section highlights how the knowledge that
this thesis generates contributes to practice. Finally, the third section outlines bigger
questions arising from this thesis that future research needs to address.

10.1. Significance for disability, development and citizenship studies

Through investigating DIB implementation in Indonesia, this thesis engages with

relevant debates in disability, development and citizenship studies from both the global
North and South. This section demonstrates how the thesis contributes to these debates
and to further scholarship in this emerging area of disability policy in the global South.

Chapter One describes the general situations of people with disability in Indonesia, the
emerging rights-based approach to disability and shifting approaches to development in
Indonesia that provide a background to the emergence of DIB. The literature review in
Chapter Two identifies the significance of research on disability budgeting in the global
South, grounded in the perspectives arising from the experience of one country from
this region. As addressed in Chapter Two, previous studies on disability budgeting,
predominantly from the global North, have limited engagement with the contexts in the
global South.

The few studies that address disability budgeting in the global South suggested that
disability mainstreaming in government budgeting may potentially help to achieve

225
disability inclusion and to realise the rights of people with disability (Hans et al. 2008,
Biyanwila and Soldatic 2016, Purcil 2016). This thesis attempts to contribute to this
debate by investigating DIB, a key policy initiative of the Indonesian government for
domestic implementation of the UNCRPD. This thesis demonstrates that such concepts
as disability rights and disability inclusion to some extent have positive effects on
Indonesian disability policy and activism. By examining the conditions that prompted
the Government of Indonesia to develop the DIB, Chapter Five indicates that DIB is an
important progressive step taken by the Indonesian government towards
mainstreaming disability rights across their development policies and programs. DIB is
integrated into existing development planning and budgeting processes in Indonesia
and requires disability to be treated as a multi-sectoral issue

One of the debates identified in the literature review was regarding the translation of
the concepts of disability rights and inclusion of the global North to the contexts of the
global South. Translating such concepts across contexts is challenging, particularly in
terms of their domestic implementation through ratification of international human
rights treaties such as the UNCRPD (Lord and Stein 2013, Schiemer 2017). In line with
this argument, Chapter Six, which explores the challenges in achieving DIB in Indonesia,
also identifies specific issues that contribute to such challenges in domestic
implementation of international human rights treaty in the global South. Paradigmatic
and implementation issues associated with a persistent traditional social welfare
approach to disability, and the lack of practical mechanisms and strategies to realise
disability rights and inclusion, contribute to challenges in achieving DIB as a policy for
disability mainstreaming in development.

Another debate in the previous relevant literature focused on the importance of

disability mainstreaming beyond poverty reduction and how to achieve this. Disability
and poverty is the common connection made in the relationship between disability and
development (Yeo and Moore 2003, McEwan and Butler 2007, Eide and Ingstad 2011).
Such connection entails that disability mainstreaming in development, particularly in the
global South, needs to concentrate on poverty reduction programs (UN DESA 2015, Karr
et al. 2016). Several studies raised the importance of disability mainstreaming in
development beyond poverty reduction because disability cuts across sectors (Miller

226
and Albert 2005, Katsui 2008, Huq et al. 2013, Edwards 2014, Stein and Stein 2014).
These studies suggest a need for investigating what disability mainstreaming beyond
poverty reduction looks like. Chapter Seven of this thesis contributes to this by exploring
the aspirations and expectations that people with disability in this study had of DIB.
Chapter Seven shows disabled people’s priorities for DIB budget allocation and their
expectations for disability mainstreaming beyond poverty reduction. People with
disability demanded DIB as a policy that may also deliver on their broader goals of
recognition and legitimacy of their disability citizenship as active agents in State-led
development.

In relation to disability mainstreaming, the other important debate of the previous

literature also concerns connections between rights, participation and citizenship.
Disability mainstreaming in development requires participation and leadership of
disabled people as citizens in all phases of development (CBM 2006, UN DESA 2011).
The rights-based approach to disability and the UNCRPD principles expect that all
disabled people are active and full citizens (Worm 2012, Sépulchre 2017, Garland-
thomson 2018). One way people with disability can claim their rights is through their
claims to citizenship (Lorenzo and Coleridge 2018). Previous literature indicates the
importance of linking participation in development with citizenship (Gaventa 2002,
Hickey and Mohan 2005, Howard 2013), and there is a need to know more about what
relationships between rights, participation and citizenship mean to people with
disability and how they are realised. Chapter Seven of this thesis also contributes to this
by examining the expectations of disabled people regarding their participation in DIB
and broader contexts of development with reference to the relevant concepts in
disability, development and citizenship studies.

Chapter Seven also offers deeper understanding of the perspectives of disabled people
on their inclusion and participation in development. Comprehensive inclusion for people
with disability means recognising the importance of providing all required measures to
ensure that disabled people are able to contribute in development, and that they are
included as government partners when designing, implementing and evaluating
development programs at all levels. To people with disability in this study the meaning
of meaningful participation goes well beyond simply being consulted for their views, and

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extends to their inclusion in agenda-setting to shape State-led development policies and
programs. They want to take part in the decision-making processes at all levels of
development.

This demand suggests that Indonesian disabled people in this study call for a form of
disability citizenship different to the concepts from the global North. Instead their claim
is for difabel citizenship, a uniquely Indonesian form of disability citizenship. The
characteristics of difabel citizenship are a different balance between rights and
obligations in which one’s ability to fulfil national obligations are part of rights realisation
rather than simply in exchange for rights, and draws attention to the importance of
recognition and legitimacy of disabled people’s participation in development. Chapter
Seven shows that for Indonesian disabled people, rights and obligations converge where
contributing to development or nation building is both their right and their obligation as
a citizen. The interconnection between development and citizenship is seen in the way
that people in this study make claims for their rights to participate in development and
their call for difabel citizenship.

Another contribution that this study makes to interdisciplinary disability, development

and citizenship studies is to draw out the relationship between recognition and
legitimacy in relation to disability mainstreaming in development and the participation
of disabled people as citizens in development. Previous disability studies, mainly from
the global North, talk about the importance of recognition for disabled people to
participate in society (Honneth 1995, Lister 2007, Ohlström et al. 2011). Chapter Seven
of this thesis shows that the concept of legitimacy is an inseparable part of recognition
and vice versa, and that this interconnection is central to Indonesian difabel citizenship.
Recognition, understood as acceptance of people with disability by society, and
legitimacy, understood as the written assurance of the participation of people with
disability given in laws, regulations and policies, have been shown to be able to facilitate
disabled people’s participation in village development as demonstrated in the case-
study of Desa Inklusi outlined in Chapter Eight of this thesis. Chapter Eight demonstrates
key factors that can support participation of disabled people in development and the
ways in which this localised good practice might provide a model for a nation-wide
approach to DIB implementation. Chapter Eight also demonstrates an example for

228
important roles of a local DPO in the successful operation of DIB’s inclusive practice at a
village level. The success was mainly due to the strong presence of a progressive local
DPO that educated government officials and society including disabled people about
disability rights and inclusion, and that developed effective synergy and working
relationship with the local government.

In conclusion, the knowledge generated by this study altogether provides both a deeper
and more comprehensive understanding of the issues that contribute to challenges in
approaching disability as a human rights issue in Indonesia as one country in the global
South, and identified key factors that can ensure successful adoption of that approach.
The thesis found that disability mainstreaming in development is not enough without
clear strategies and mechanisms to ensure the policy’s comprehensive implementation
and full participation of disabled people in all development processes. This thesis,
therefore, also provides insights on examining the implementation of the human rights
approach to disability through disability budgeting in countries of the global South.

10.2. Significance for practice

The analysis of the underlying challenges of DIB implementation and the expectation of
what this policy should achieve furthers understanding about what is required for
government policies that aim to mainstream disability into development. This section
highlights the significance of the knowledge generated by this thesis for practice. Budget
allocation for disability in government mainstream policies and programs is not enough
for successful disability mainstreaming in development. Policies and mechanisms that
aim to mainstream disability in development, such as DIB, must enable full participation
of people with disability and their difabel citizenship.

Mainstreaming as expected by disabled people entails provision of all needed support

to participate, as well as the recognition and legitimacy that position disabled as the
active agents of development and the partner of the government. Desa Inklusi has
shown the central role of DPOs in working in partnership with government to
mainstream disability in village development. This best practice suggests the importance

229
of government providing continuous support to the advocacy work of DPOs in the global
South. DPOs help the government to understand the human rights framework to
disability in development and how to operationalise it in practice. The establishment of
partnerships between governments and people with disability through DPOs is crucial
for an understanding of what people with disability need and how to include their
perspectives in government programs. Partnership here means recognition that
government is open to engaging with disabled people as important stakeholders
involved actively in all decision-making processes.

Ensuring the full participation of disabled people, particularly through providing support
for DPOs and partnership with them, is a significant key factor to successful disability
inclusion in development planning and budgeting. The availability of resources to put
the mainstreaming policy into practice is also important. In practice, the government
will need clear strategies and mechanisms to ensure full participation of disabled people
at all levels of development planning and budgeting. Cooperation with local DPOs which
magnifies and situates the work of the local government needs resources and other
forms of support to enable strong partnerships between the two. Strong DPOs in this
context are underpinned by resource and network sharing across the disability civil
society context.

Difabel citizenship is an important concept emerging from this thesis that demonstrates
the importance of bringing the voices of people with disability to define their citizenship
in their own terms. As exemplified by the Indonesian context in this study, disabled
people call for a unique form of difabel citizenship that demands recognition of people
with disability as valued citizens and doers of development. To support full participation
in development, governments in countries of the global South need to recognise how
their disabled citizens define their citizenship grounded in national and local values. All
the above not only requires a shift in understanding and approaching disability from
welfare focus to rights based, but requires full efforts and concrete measures for
ensuring comprehensive inclusion of disability and people with disability in
development.

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10.3. Limitations of the study

Chapter Four of this thesis has highlighted the methodological limitations of this study
that include limited generalisation for the findings due to the sample that does not
capture the diversity of disability, the lack of representation from other government
departments, limited study sites, and no options for a follow-up fieldwork. Beyond such
limitations in methodology, overall this study may not be generalisable to all contexts in
the global South that are very dynamic and fluid. Because DIB is so new in Indonesia,
there is no previous literature, making the body of evidence that can be referenced for
this in-depth analysis necessarily narrow. It is not possible to say conclusively what DIB
should look like in the future. Ongoing research is required to monitor and evaluate this
emerging policy to ensure that it can be an agile and responsive rights-based approach
to disability mainstreaming in development, evidence about which can inform its
implementation in other countries of the global South.

10.4. Implications for future research

This thesis has examined the potential of DIB for realising the rights of persons with
disability in Indonesia from the perspective of both the government and the disability
community. The research project commenced at the same time as DIB guideline was
introduced by the Indonesian government and so has tracked, to the time of writing,
DIB’s implementation challenges and opportunities as a possible mechanism for
disability rights realisation. Furthermore, this thesis raises bigger questions in relation
to the paradigm shift to approaching disability in the global South and the applicability
of DIB beyond Indonesia.

For example, it is important to evaluate the nature of discourse on a rights-based

approach to disability and disability inclusion in development at all levels of the
Government of Indonesia to see where paradigmatic changes are possible. Comparative
studies on how other countries in South East Asia and more broadly in the global South
implement disability mainstreaming into their development planning and budgeting will
be crucial. This kind of comparative study is significant to understand not only if DIB is

231
applicable in all global Southern contexts, but also to provide more insights on further
challenges and key factors to success that can inform DIB implementation in Indonesia.

Ultimately, this thesis is important because it contributes to understanding the nature,

scope and potential of disability budgeting and its implementation in the global South.
The thesis has throughout highlighted that while significant improvements have been
made in Disability rights in Indonesia through the DIB, particularly in shifting the
paradigm, the implementation mechanisms to ensure its realisation in practice are
under-developed. Although there has been a paradigm shift in legal language, there has
not been a change in the discourse that effects thinking and practice.

Furthermore, there are significant implementation issues that relate to how

mainstreaming is established in practice. Listening to people with disability suggests
possible ways to address these issues, both through their greater understanding of these
issues, and through their different conceptualisation of key terms in DIB such as
inclusion, participation, recognition and legitimacy. The ultimate message captured here
from the voices of disabled people in Indonesia is that pursuing and enabling difabel
citizenship offers a once in a generation opportunity for the Government of Indonesia
to harness the knowledge, skills and desires of disabled people by placing them at the
forefront of policy change and implementation; this can enable a true partnership
approach to achieving their shared ambitions for DIB and ultimately their vision for an
inclusive Indonesian society.

232
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 Appendices

Appendix 1. Letters of support

Sample of letter of support from a national DPO

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Sample of letter of support from a local DPO

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Appendix 2. Recruitment materials

Sample of letter of invitation to government officials

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Sample of letter of invitation to disability activists

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Invitation poster for focus groups participants

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Expression of Interest (EOI) to participate in a focus group

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Appendix 3. Interview schedule

Sample of interview schedule with government officials

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Sample of interview schedule with disability activists

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Sample of interview schedule for focus group discussions

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Appendix 4. Participant information sheet and consent forms

Sample of participant information sheet and consent forms for participants of semi-
structured interviews and focus group discussions

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Sample of verbal consent script for participants of focus group discussions

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