The Journal of Pacific History, 2017

Vol. 52, No. 3, 343–359, https://doi.org/10.1080/00223344.2017.1385884

Out of Sight and Out of Mind: The Ongoing Problem

of Treating Leprosy

DOROTHY MCMENAMIN

ABSTRACT

This paper considers the changing medical environment in the way leprosy was
experienced from around the turn of the 20th century until the early 21st century. The
differing understandings of the disease and corresponding treatments not only affected
patients directly, but influenced attitudes towards the disease which in turn impacted
upon leprosy sufferers. Forty interviews were conducted between 2004 and 2008 with
people who had suffered leprosy in Fiji, New Caledonia, Tonga, Vanuatu and Samoa.
These sources are used to describe the changing experiences of those living with leprosy
and its consequences in the second half of the period under survey.

Key words: Leprosy, Hansen’s disease, Fiji, Samoa, Tonga, New Caledonia, Vanuatu,
oral history, leprosaria, treatment, stigma

This paper focuses on how the changing medical environment impacted on leprosy
sufferers in Fiji, New Caledonia, Tonga, Vanuatu and Samoa. Personal experi-
ences are derived from the oral histories of elderly leprosy sufferers, who narrate
details of their initial diagnosis, the pain of separation from family required by
the early policy of isolation and provide descriptions of the living conditions in
small leprosy colonies and large regional leprosaria. Following the discovery of sul-
phones which became available from the 1940s, narrators recount the joy and pain
of returning home after isolation, while a few explain their reasons for continuing
to reside at leprosaria. Since the 1980s the improved multidrug therapy (MTD) has
provided an excellent cure, dramatically lowering the incidence of leprosy which

Dorothy McMenamin Department of History and Art History, University of Otago, Dunedin.
dorothym@snap.net.nz

Acknowledgements: Funding for conducting the oral histories was provided by the International
Leprosy Association Project, Global Project on the History of Leprosy (funded by Nippon Foun-
dation) Welcome Unit for the History of Medicine, University of Oxford, for which I am grateful.
I also thank Jane Buckingham for her constant support and for extending funding to undertake my
MA via her Marsden Fund project. Thanks are due to McFarland, my publishers for Leprosy and
Stigma in the South Pacific: A Region-by-Region History with First Person Accounts. In particular, my
sincere thanks go to the oral history participants who generously shared their experiences with
me, making the project possible, engendering an understanding of the plight, dignity and resilience
dealing with the trials of leprosy.

© 2017 The Journal of Pacific History, Inc.

344 THE JOURNAL OF PACIFIC HISTORY

by the 1960s had developed resistance to the earlier sulphone treatments.

However, recent experiences of patients signal a need for extra vigilance as the
decreasing visibility of the disease has resulted in medical professionals often
failing to recognize early symptoms. The disease itself has become ‘out of sight
and out of mind’ raising again the risk of the awful repercussions of severe physical
deformities and disabilities.1

EARLY ISOLATION PRACTICES

Leprosy was not definitively recognized or diagnosed in the South Pacific until
towards the turn of the 20th century, and the extent to which the disease was
present in the islands prior to European contact is unclear. Some accounts suggest
that leprosy was known in Fiji before the arrival of Europeans, with the first recorded
mention not until 1837 but whether this was leprosy or not is debatable.2 Before the
annexation of the Fiji Islands by Britain in 1874, the fear of leprosy appears to have
grown in tandem with the increasing prevalence of the disease to the extent that
advanced cases were reportedly clubbed to death, in line with local practices
towards the terminally ill.3 By 1900 there were an estimated thousand cases of
leprosy in Fiji and, in an attempt to limit possible contagion, a leper ordinance was
passed in 1899 restricting the occupations of those with the disease.4 In Tonga, the
1875 constitution adopted an exclusionary attitude towards leprosy, reflecting such
a strong fear of contagion that anyone with leprosy symptoms faced exile.5 Records
in New Caledonia suggest that leprosy arrived around the 1860s, the first case
being diagnosed in 1883, soon after which the French Caledonian government
adopted a strict policy of isolation.6
In the New Hebrides, now called Vanuatu, the first official case of leprosy was
identified in 1883 and a small group of leprosy sufferers was isolated and received care
1
Oral histories conducted by the author are archived at the archives of the Pacific Leprosy Foun-
dation (hereinafter PLF) in the Macmillan Brown Library, University of Canterbury, Christchurch,
New Zealand (hereinafter MB).
2
D.W. Beckett, ‘The Striking Hand of God: Leprosy in History’, New Zealand Medical Journal 100
(1987): 494‒7, cited from an unpublished copy in Harris Papers, 11, MB. See also Sister Mary
Stella, Makogai – Image of Hope: A Brief History of the Care of Leprosy Patients in Fiji, 2nd ed. (Christchurch:
Pacific Leprosy Foundation, 2006), 18‒9. For the introduction of leprosy into the Pacific, see
Raeburn Lange, ‘Leprosy in the Cook Islands, 1890‒1925’, this collection and Vicki Luker,
‘The Lessons of Leprosy? Reflections on Hansen’s Disease in the Response to HIV and AIDS in
the Pacific’, this collection.
3
Beckett, ‘The Striking Hand of God’,12; Stella, Makogai, 19.
4
Stella, Makogai, 19.
5
Sione Latukefu, Church and State in Tonga: The Wesleyan Methodist Missionaries and Political Development,
1822–1875 (Canberra: Australian National University Press, 1974), 207, 252‒3.
6
D.A. Lonie, Trends in Leprosy in the Pacific: An Account of the Introduction and Spread of Leprosy in the Pacific,
and of its Importance in Pacific Health (Noumea: South Pacific Commission, 1959), 19.
 OUT OF SIGHT AND OUT OF MIND 345

between 1909 and 1917 on the island of Tanna.7 The disparate location of the islands
comprising the New Hebrides and the existence of over a hundred languages ham-
pered medical communications. However, Christian missionaries, particularly those
travelling from Australia and New Zealand via the New Hebrides en route to the
Solomon Islands, provided medical services to several island communities. From
1906 right up until 1980 no public policy in relation to leprosy was formally
adopted by the Anglo-French condominium government of the New Hebrides
although from the 1940s cases were treated on an ad hoc basis by the mission services,
which subsequently set up various leprosaria with the aid of the Leprosy Trust Board,
a New Zealand charity discussed in more detail below.
Drawing from local oral traditions and the personal experiences of the
various interviewees, it is clear that the external and other debilitating symptoms of
leprosy, which arise as the disease progresses, caused great fear.8 It appears that
prior to Western medical intervention, people exhibiting symptoms of leprosy were
frequently considered to be subjects of witchcraft or a curse, although community
responses towards sufferers varied.9 Some victims remained within their homes or
lived separately nearby, while others were banished or moved away, living in small
groups with fellow leprosy sufferers, eking out an existence as best they could.10 Inter-
views with leprosy sufferers in Vanuatu indicate that, apart from a few patients
admitted and cared for at mission hospitals prior to the establishment of the first
leprosarium at Lolowai in 1956, families in villages attempted to tend their own
sick, while other sufferers lived together in relative isolation and helped care for
each other.11 There being no known cure, they often experimented with local plant
remedies, although frequently these were said to be linked with witchcraft practices.

ESTABLISHMENT OF LEPROSARIA IN THE REGION

Following the clinical delimitations of leprosy in 1847 by Norwegians Daniel Corne-

lius Danielssen and C.W. Boeck, and Gerhard Armauer Hansen’s discovery in 1873 of
the leprosy-causing bacillus, Mycobacterium leprae, colonial medical officials were more
readily able to identify and diagnose early leprosy. The recommendation of the Inter-
national World Leprosy Conference in Berlin in 1897 to segregate leprosy sufferers
became the policy within a decade in most Pacific islands.12 In New Caledonia
7
J.G. Miller, Live: A History of Church Planting in the Republic of Vanuatu, Book 4, 1881–1920 (Port Vila:
The Presbyterian Church of Vanuatu, 1986), 102‒4.
8
C.J. Austin, Makogai: Fiji Leprosy Hospital (Suva: Government of the Colony of Fiji, 1954), [pages
unnumbered].
9
Beckett, The Striking Hand of God, 11; see Personal communications between Lutui and
D. McMenamin, 6 and 8 Dec. 2006, McMenamin Papers, MB.
10
Pers. comm. Dr Jacques Michaudel; D. McMenamin, ‘Report on Visit to New Caledonia’, Sept.
2006, 1, McMenamin Pacific Papers, MB.
11
D. McMenamin, ‘Report on Visit to Vanuatu’, 2006, 3, MB.
12
Lange, ‘Leprosy in the Cook Islands’, this collection.
346 THE JOURNAL OF PACIFIC HISTORY

leprosy had been unknown before French annexation in 1853. By 1890, however,
with thousands of French convicts being shipped onto the island, hundreds of cases
were reported in the medical press with the disease affecting both French convicts
and local peoples.13
In New Caledonia the French colonial government adopted a policy of strict
isolation as early as 1892 and established a leprosy colony at an ex-prison site in the
remote north on one of the Belep islands.14 The choice of a former penitentiary at
Belep as the site of a leprosy colony reflected the outcast status of sufferers. The
earliest pioneers of the order of the Missionary Sisters of the Society of Mary
(SMSM) occasionally visited Belep and offered solace and informal nursing.15 Then
in 1898 a decision was made to transfer the leprosy sufferers at Belep closer to
Noumea, initially to the Ile aux Chèvres, and subsequently, in 1918, to another
former high-security penitentiary at Ducos where the central leprosarium was
established.16
Initially patients at Ducos were again left to care for themselves. Visits from a
doctor were intermittent, but more formal nursing services were gradually provided
by the SMSM and Cluny Sisters. Those diagnosed with leprosy were immediately
confined and isolation remained complete because discharges from Ducos were not
permitted until as late as 1976.17 This strict policy evoked great fear of isolation
and to escape permanent exile from their homes, many people with leprosy symptoms
hid from the authorities, unfortunately allowing further dispersal of the bacilli.18 It was
only when the disabilities became so grave and the need for help desperate, that some
of these victims voluntarily sought medical assistance and sanctuary at Ducos.
The strict and permanent exile of patients from their home communities
certainly made leprosy a disease ‘out of sight and out of mind’. Although the policy
of isolation induced many victims of the disease to hide from health authorities,
other patients resident in leprosaria reported good care and were able to form their
own social communities. The extent to which leprosaria succeeded in containing the
spread of leprosy prior to the discovery of its cure is unclear but greater observation
and understanding of the disease became possible, and good health facilities contribu-
ted to the well-being of patients. In the South Pacific region the overall prevalence of

13
William Tebb, The Recrudescence of Leprosy and its Causation: A Popular Treatise (London: Son-
nenschein & Co., 1893), 56–8.
14
P. Bobin, La Lèpre en Nouvelle-Calédonie: Rappel Historique (Noumea: Service de Dermatologie CHT,
1999): 1. Available at McMenamin Pacific Papers, MB.
15
M.A. Grosperrin, The Vocation of the Pioneers (Rome: Missionary Sisters of the Society of Mary,
2005), 63‒4.
16
Bobin, La Lèpre en Nouvelle-Calédonie, 1.
17
Bobin, La Lèpre en Nouvelle-Calédonie, 1; R.G. Farrugia, 2006, transcript, 10–1, PLF oral histories,
MB. Dr Roland Farrugia was the medical superintendent in charge at Ducos and confirmed that in
1976 he authorized the opening of the gates to allow cured patients to come and go as they pleased.
Subsequently Dr Farrugia was leprologist for the World Health Organization, and he is currently
the consultant leprologist for the Pacific Leprosy Foundation.
18
Farrugia, 2006, transcript, 35, PLF oral histories, MB.
 OUT OF SIGHT AND OUT OF MIND 347

leprosy was reduced before any effective cure became available suggesting that
isolation and leprosaria might have contributed to the decline.19 Some leprosaria
also became centres where research and medical knowledge about the disease
progressed. The discovery in 1948 of the sulphone cure for leprosy at the central lepro-
sarium in Carville, Louisiana is famous, but less well known are the contributions to
science and the relief of patients’ suffering that were achieved in the Pacific. Against
the view that Christian-run leprosaria concentrated merely on the spiritual needs of
patients stood the efforts of workers such as French Sister M. Suzanne of the Order
of the Society of Mary who, at the hospital on Makogai, the Pasteur Institute and sub-
sequently in New Caledonia, isolated the leprosy bacillus and was honoured for her
achievement.20
By 1920 small leprosy colonies had been set up in various Pacific islands, but
the outstanding facilities at the leprosarium established in 1911 on the island of
Makogai culminated in several small local colonies closing and patients being trans-
ferred to Fiji.21 Makogai became the central leprosarium for much of the South
Pacific region. Even New Zealand patients, who had received charitable assistance
in Christchurch, were sent to Makogai in 1925, at which time the charity under the
auspices of a New Zealander Patrick Twomey extended its work to assist all leprosy
sufferers at Makogai. Subsequently the charitable trust, which became known as
the Leprosy Trust Board (LTB) further extended assistance to leprosy patients
throughout the South Pacific region. Operating through various church missions
on a completely non-denominational basis, the charity, later renamed the Pacific
Leprosy Foundation (PLF), proved to be a huge benefit to patients, providing
assistance both while patients were in care and after their discharge. The PLF’s
work continues into the present day in the islands.22

EXPERIENCES OF SEPARATION AND LIFE AT LEPROSARIA

The initiation of the policy of incarceration at leprosaria was deeply ostracizing for
leprosy patients, and usually involved transporting the victim vast distances from
their own homes, causing deep sorrow and fear. The fact that patients were totally
out of sight from their families made them feel equally out of mind and forgotten.
Apart from medical records at the larger leprosaria, such as at Makogai and
Ducos, the experiences of exile and settlement of the first generation of leprosy suf-
ferers into leprosaria is unrecorded. However, several oral histories have been
recorded with people who were taken to Makogai in the 1930s up to 1950 prior to
the availability of sulphones. These earliest testimonies provide an insight into the
sorrowful parting from families, which at the time was thought to be permanent.
19
C.J. Austin, ‘Leprosy in Fiji and the South Seas’, International Journal of Leprosy 17:4 (1949): 402.
20
McMenamin, Leprosy and Stigma, 76‒7; Stella, Makogai, 154‒5.
21
Jane Buckingham, ‘The Pacific Leprosy Foundation Archive and Oral Histories of Leprosy in the
South Pacific’, The Journal of Pacific History 41:1 (2006): 81–6.
22
See http://www.leprosy.org.nz/. Accessed 30 April 2017.
348 THE JOURNAL OF PACIFIC HISTORY

The recordings also describe the conditions of their isolation awaiting transport to the
larger leprosaria, their reception at the leprosaria and the medical treatment and
living conditions encountered. What becomes abundantly clear is that, despite their
awful initial fears, the camaraderie and care found at the leprosaria gave rise to a
sense of being part of a wider supporting community. Living at leprosaria gave the
residents the comfort of being totally ‘in the mind’ of their medical carers, despite
being totally ‘out of sight’ of their family and loved home communities.
The following testimonies provide an understanding of the treatment that
leprosy sufferers had to endure prior to the discovery of the cure, and also of the
first trial of sulphones at Makogai in 1949. By the late 19th century the primary
Western leprosy treatment was the Indian remedy, chaulmoogra oil and its esthers,
extracted from the Gynocardiaodorata tree, and administered orally and/or via
painful injections.23 This unpopular treatment is recalled by a resident who had
been admitted in 1928 aged eight to Ducos, the leprosarium in New Caledonia:

[Through translator]: The doctor came twice a week with injections

… chaulmoogra … Very painful … twenty years he had that … He
always thought it was going to do something positive so he didn’t
try not to have it … some people decided not to continue and [some-
times] it didn’t absorb … it was difficult to find a place to do the injec-
tion. They also had to swallow the oil as well. It was pure oil and … it
tasted awful.24

This shows that some patients were eager to cooperate with health officials in the hope
that their health would improve, despite the pain involved.
Transferral of patients from other Pacific Islands to Makogai was dreaded,
but conditions of isolation in their home islands were equally fearful as this Samoan
patient recalled:

When I got there [at the back of the grounds at Apia hospital], I saw
… A very high fence, and there was a door, and when I got there, the
nurse told my dad that he got to say goodbye to me now and he must
never touch me anymore … this was very hurtful. So I heard this, and
I ran to my father and I hang onto him and say, ‘oh no, you can’t do
this to me, I won’t, I won’t go into that fence’. They had to force me
… when he [father] comes around to see me, he stands outside, he
never comes in … talks to me from outside … that is how I was for
almost a year, waiting for the ship to go to Makogai.25

23
John Parascandola, ‘Chaulmoogra Oil and the Treatment of Leprosy’, Pharmacy in History 45:2
(2003): 47–57. Available online at https://lhncbc.nlm.nih.gov/files/archive/pub2003048.
pdf.Accessed 18 October 2016.
24
H. Tourte, 2006, transcript, 1–3, PLF oral histories, MB.
25
R. McFarland, 2006, transcript, 2, PLF oral histories, MB. For accounts of patients’ experiences
on Makogai, see also Bob Madey and Larry Thomas, Compassionate Exile (Suva: X-Isle Productions,
1999), Videocassette (VHS), 60 min.; Jane Buckingham, ‘The Inclusivity of Exclusion: Isolation and
 OUT OF SIGHT AND OUT OF MIND 349

Testimonies from two Tongan male patients provide insights into their feelings at the
time of removal from their homes, and their subsequent time in Makogai. The first
recalled:
[Through translator]: It was hard to be separated from his mum …
people were scared that they would never come back, that they died
there. But when he got there they had this tablet that they could treat
it. Then he said when he arrived there he was very impressed with the
place, you know, and he liked it. The only hard thing he feels that is
not seeing his mum.26

His testimony demonstrates the dread and sadness of being separated from loved ones
but reflects a positive experience at Makogai. This ambivalence is also apparent in the
second testimony:

Nobody want to stay in a place like Makogai, I want to stay in my

home, but only the sickness … Oh, everybody cry when somebody
leave Makogai. Everybody come and gift, people come and make
the food, something to take back … make the party … sad, but
going back to family. Staying on Makogai was like a family, never
mind I’m Tongan, Fijian, Indian or Cook Island or Samoan. We
stayed there and lived like a family … Feeling, like your brothers
are gone … people very sad to go to Makogai, everyone stayed
there was good, free place, free life.27

An interview with Manitepi Molimoli in Tonga, who was isolated on Makogai aged 20
and who remained there for 12 years until 1964, demonstrates her twin sorrows experi-
enced first by exclusion from home, and later her departure from Makogai. At both
points in her testimony she wept profusely recounting her memories of leaving
Tonga, and again when saying goodbye to her friends and new ‘family’ in Makogai.28
The irony in this testimony is the fact that upon returning to Tonga, the stigma of
leprosy was still such that Manitepi was excluded from living with her family and
lived alone in a small home provided with assistance from the Pacific Leprosy Foun-
dation. In between her tears Manitepi fondly remembered her life in Makogai.
The residents at Makogai were segregated by nationality and also by gender.
Samoans, Cook Islanders, Gilbertese, Tongans, Fijians, ‘Solomonese’, Indians and
Europeans occupied designated areas, but women and children lived separately
from the men folk.29 Two Fijian women, isolated at Makogai as schoolgirls, described
the conditions for women in their gender-segregated environment:

Community among Leprosy Affected People in the South Pacific’, Health and History 13:2 (2011):
65–83.
26
Taliai Sanft, 2006, transcript, 2, PLF oral histories, MB.
27
Polutele Fakatava, 2004, transcript, 6, PLF oral histories, MB.
28
Manitepi Molimoli, 2006, transcript, PLF oral histories, MB; see also McMenamin, Leprosy and
Stigma, 142–5.
29
Stella, Makogai, 74‒5.
350 THE JOURNAL OF PACIFIC HISTORY

there was a special building for the … very weak [women], so I was in
that building … the school had their own building, the women all in
the building … Six o’clock we have to go inside and lock the doors
… our head woman locked the doors … so sometimes they make fun
of us, the men, sitting around, jailbirds are inside … The men could
go where they liked … the men have their own village[s] … Women
locked in, they stay there, some sewing, sometimes singing, playing
cards. [We] Prepare our breakfast, then you go to take medicine,
to the dressing room. After that you came back have your breakfast
… do your washing or whatever you want to do. Go to the other
island for picnic, fishing, enjoy our world.30

Under the supervisory eye of SMSM staff, on certain days of the week and on special
occasions, the men and women were allowed to mix, which they enjoyed.

On Monday and Thursday we look forward to the film night … we

had a shop … When it is Christmas time we all go and do our
Christmas shopping … On Christmas day we all have a parcel,
imagine 700 parcels under the tree, and the sisters calling out
names and entertain us.31

Another Fijian woman recalled the benefits she perceived were available while iso-
lated at Makogai, especially the companionship:

[Through translator]: [She] played netball [and] captained the team

… They all assisted and helped one another … communal life and the
richness of the crops, vegetables and fruit and the sea, that’s what
made them want to stay back there. The unity and the bond that
they have had on each other, they know that when they come to
Suva, one would be going this way and one there; but there [at
Makogai] it was like one big family of them and that’s what they said.32

These testimonies, only a few amongst many, affirm that life on Makogai was made as
normal as possible by the SMSM staff, and patients greatly appreciated the care, treat-
ment and lifestyle. Despite the initial horror of a diagnosis of leprosy, even the sight of
advanced cases at the leprosarium, and the strict regime of hygiene and segregation,
these extracts demonstrate that patients came to appreciate certain benefits at Makogai.33
At Makogai leprosarium, even prior to the availability of the cure effected by
sulphones, the efficiency and standard of care resulted in many patients being
discharged.34 Patients returning home became excellent propaganda for the

30
Susau F. Layasewa, 2004, transcript, 12, PLF oral histories, MB.
31
Layasewa, 2004, 12.
32
Wati Moira, 2004, transcript, PLF oral histories, MB.
33
Layasewa, 2004, 10.
34
A total of 2343 patients discharged from an overall total of 4185 admissions, Stella, Makogai, 171.
See also Austin, ‘Leprosy in Fiji and the South Seas’, 402.
 OUT OF SIGHT AND OUT OF MIND 351

leprosarium, and this high rate of discharge, combined with good care and living con-
ditions at Makogai, over time, removed a large element of fear about isolation.35
Interviews with former patients from Fiji, Tonga, Gilbert Islands and Samoa indicate
that the good conditions they experienced at Makogai led to the joy of camaraderie
whilst isolated there.36 This compensated enormously for their removal from their
homes and families, because they also recognized that having leprosy would have pre-
vented them from leading normal lives in their home villages.
The regime at Ducos leprosarium in New Caledonia differed from the system
in place on Makogai. At Ducos, patients were isolated permanently and, unlike at
Makogai, all inmates were allowed to mix. Consequently, many married and raised
families at Ducos. Twomey’s charitable efforts extended to these patients for several
decades from 1944. Then in 1990, the government in New Caledonia took over
their care, although some nursing was still provided by the SMSM and Cluny
sisters until the last retired in 2006.37 Because the policy of total internment remained
in force in New Caledonia until 1976, many leprosy sufferers continued to hide from
the authorities. This evasion probably contributed to a higher prevalence of leprosy
recorded in remote areas, which in turn led to relatively higher stigma and a slower
reduction of leprosy prevalence in New Caledonia.38
The introduction of sulphones changed the trajectory of leprosy treatment in
the Pacific and brought the possibility of treatment without isolation. A Samoan resi-
dent at Makogai spoke of the huge changes that occurred following the introduction of
the new sulphone drug:

[At Makogai] Chaulmoogra was very painful. [But the new medicine
made] a very very fast difference … 1952 I think they started … Very
big changes, because there was a very long hospital … all the patients
in there, some of them lying there, with no legs, no hands, sores all
over … People started to get well, there were patients that had no
more sores. Patients who were very sick, they just died, it was too
late. But we lucky, I am lucky.39

With the introduction of sulphones, came the recognition from the early 1950s that
leprosy could be treated, and that incarceration at Makogai was not permanent.

POST-CURE EXPERIENCES AT SMALL LEPROSY STATIONS FROM 1970

Apart from in New Caledonia where patients remained at Ducos until much later,
once the central leprosarium at Makogai closed in 1969, leprosy patients no longer
had to face isolation over long distances. Nevertheless, temporary isolation remained
part of the treatment following a diagnosis of leprosy whilst undergoing the course of
35
Austin, ‘Leprosy in Fiji and the South Seas’, 399‒409.
36
McMenamin, Leprosy and Stigma, 71‒2.
37
McMenamin, Leprosy and Stigma, 83‒91, and Grosperrin, The Vocation, 64.
38
McMenamin, Leprosy and Stigma, 96.
39
McFarland, 2006, 4.
352 THE JOURNAL OF PACIFIC HISTORY

medication. The dismal conditions of some smaller local leprosy wards or stations,
such as that described earlier in Samoa, contributed to the continuing fear and stig-
matization that later hindered some from returning to a normal life after being cured.
An example of the meagre isolation facilities available adjoining a local hospital in
Tonga in about 1970 was described:

[Through translator]: In the hospital at Fale‘ofa there were three men

and three women, and she is the fourth … The fence was very high. It
was difficult to get over. They felt like a slave being there because of
the fence … their meals, they just put it through this box, there is a
box in the fence and they just put it in … They were not allowed
to come in nor were they allowed to get out. Even the doctors,
came only from the area where they were allowed to come in …
They didn’t come in at all to the hospital itself … There were only
two people that as far as she can recall who actually came in,
opened the gate and came right into them, the Priest … [and] Euro-
pean lady … The lady brought sewing kits and all that and taught
them how to sew.40

This description suggests that the better facilities of large leprosaria were more
comfortable for patients, despite the tyranny of distances from their homes. However,
not all smaller isolation facilities were so restrictive. In Vanuatu, no specific leprosy hos-
pital existed until the leprosarium at Lolowai was established in 1956, by which time
leprosy was curable. Prior to 1949 the few diagnosed patients were accommodated in
native leaf houses near the main Godden Memorial Hospital on Lolowai, run by the
Anglican Melanesian Mission in New Zealand. In 1949, when the newly appointed
Sister Betty Pyatt was travelling to take up her post as matron of the Godden Memorial
Hospital, Patrick Twomey of the LTB was touring the region to assess the plight of
leprosy sufferers and happened to be on the same ship.41 After visiting Lolowai hospital
with Sister Pyatt where they met a few leprosy patients, Twomey offered LTB assistance
for continuing leprosy care. With the cooperation of the Catholic Mission and Lions
Association, the LTB had already assisted leprosy patients treated at the local Melane-
sian Mission hospitals in the Solomon Islands as well as in New Caledonia and this aid
was extended to Vanuatu. Subsequently more leprosy patients were admitted to Lolowai
and, in 1956, 25 patients were found and brought to the hospital. Sister Betty Pyatt then
appealed for and received further assistance from the LTB overseeing the establishment
of St Barnabas leprosarium behind Lolowai hospital.42
As sulphones, particularly dapsone tablets, were readily available by 1956,
isolation at Lolowai never represented the total exile that was initially feared in
other islands. Being taken to Lolowai was little different from admission of other

40
Kulaea Tu‘aLeketi, 2006, transcript, 2, PLF oral histories, MB.
41
Betty Pyatt, 2007, transcript, tape 2, 2–3, PLF oral histories, MB.
42
A detailed description of the establishment of the St Barnabas leprosarium is provided in oral
history testimonies of Sister Betty Pyatt and Dr and Mrs Bruce Mackereth, and condensed in
McMenamin, Leprosy and Stigma, 159‒76.
 OUT OF SIGHT AND OUT OF MIND 353

patients at the nearby general hospital, although many leprosy patients chose to
remain in residence for several years. No fences separated the leprosarium from the
hospital, nor from the general public. On special feast days the public and patients
regularly mixed, but care was taken to prevent contagion by keeping food and utensils
separate.43 Cured patients were readily discharged and able to return home, so that
strict separation and long-term effects of isolation, far removed from loved ones, were
not issues faced by these leprosy patients in Vanuatu. Nevertheless, even temporary
separation caused isolated patients much sorrow, as explained by Sister Betty Pyatt:

[When] I walked up that hill [by the leprosarium] and there was
someone sitting on that tree trunk, it would mean that they wanted
to talk … a lot of it was stories from their villages that they’d heard.
They were worried about … what was happening to his wife and if
she was playing around with somebody else and all this sort of
thing. It was really, really hard for them being isolated from their
families.44

Isolation, whether near or far, long term or relatively short term, inevitably involved
exclusion from family life which caused its own problems, adding to the tribulations of
leprosy sufferers.
RETURNING HOME AND REHABILITATION EXPERIENCES

Although from the 1950s the revolutionary improvement in the lives of leprosy suf-
ferers brought about by dapsone meant that long-term isolation was no longer necess-
ary, the problems associated with leprosy continued. Whether in spontaneous
remission or cured, nerves damaged prior to treatment could not recover, so for
many patients the ensuing disabilities required continuing medical attention into
old age. With the closure of the central Makogai leprosarium in 1969, and in recog-
nition of Pat Twomey’s charitable services for over four decades, the P.J. Twomey
Memorial Hospital was opened in Suva to take over the remaining patients from
Makogai. Today it serves as a specialist leprosy and training hospital for the South
Pacific.
What becomes apparent is that adjusting back to normal life in their homes
and villages was not easy or straightforward, as explained by a daughter translating for
her Fijian mother who had resided long-term at Makogai:

[Through translator]: [Leaving] was very hard for them and

especially for those discharged and come to experience the hard
life in Suva, financial constraints then, and the families … that
made it very hard … Some, they were still not sure whether they
would be accepted at all or not … she didn’t have problems with
the family, with her relatives, but it is with the neighbourhood,
those who are not family … either they stand aside, or you know,
43
J. Woi Tarisesei, 2006, transcript, 1, PLF oral histories, MB.
44
Pyatt, 2007, tape 2, 13.
354 THE JOURNAL OF PACIFIC HISTORY

make faces like that, or don’t stay too long, but she didn’t come to
problems.45

The physical deformities caused by leprosy clearly remained a problem for people in
public places when knowledge about leprosy was limited or non-existent. One of the
comforts of being resident in leprosaria, was that the patients were surrounded by
people who fully understood their predicament and its disfiguring effects. Too often
these disfigurements suggested to those ignorant about leprosy, that the disease was
still present and infectious. Four Tongan interviewees, who went home after isolation
at Makogai, found it even more difficult to reintegrate into their villages than the
Fijians because of fear and strong leprosy stigma. Because of difficulties in Tonga,
another former Makogai patient returned to Twomey Hospital in Fiji to live out
the remainder of his days.46 Three other interviewees in Tonga lived on their own,
unmarried, in small homes provided by the Pacific Leprosy Foundation, as they
were not accepted back to live with their families.47
These and other leprosy patients in the South Pacific were fortunate to have
access to the specialist Twomey hospital in Suva when serious health issues associated
with their long-term leprosy arose. Regular health checks were available locally in
specialist leprosy wards and clinics attached to local hospitals. These were kept busy
dealing with new patients as well as old patients suffering the ongoing and incurable
effects of leprosy, including the debriding of ulcers caused by repetitive actions on
desensitized nerves and problems associated with amputations.
By the 1970s resistance to dapsone surfaced worldwide and large numbers of
patients suffered recurrences of leprosy. When these relapses occurred, the intervie-
wees were clearly grateful to be able to approach leprosy carers for treatment.
Their gratitude was due to their experiences of care at Makogai and subsequently
at Twomey Memorial Hospital. The latter has become both a rehabilitation centre
for leprosy patients in need of further care, and a home for those with disabilities
where they can live out their elderly years with dignity. A Fijian resident at
Twomey Hospital who had earlier been at Makogai explained:

when it [leprosy] come back … I came here [Twomey hospital] … I

was here in 1989 only for three months … nowadays you just take
your medicine and then send you home, you take it at home. They
don’t keep you anymore … then I came back in 1994, and I am
still here. But not taking any more drugs … [Since my husband
died] I haven’t got a home of my own, just my sister’s and my broth-
er’s … they visit me and I go and see them. And they want me to
come but, I think I like it here … because they have their own
families, the children have to be educated, they have own
[responsibilities].48

45
Moira, 2004, 10.
46
Polutele Fakatava was interviewed in later life at Twomey Memorial Hospital in 2004.
47
McMenamin, Leprosy and Stigma, 132, 138, 141, 145.
48
Layasewa, 2004, 9.
 OUT OF SIGHT AND OUT OF MIND 355

The residents interviewed at Twomey hospital, especially those with leg amputations,
felt that their disabilities made it almost impossible to reside with members of their
families in small, traditional homes. The following two extracts explain this
predicament:

we not free to stay with our parents, we have no house and thing like
that … how you can move [when you can] hardly move … I have to
bring … crutch to go inside. But if I have prosthesis leg, I have to take
it out, outside, [then] I have to crawl inside.49
When I go out I use my artificial leg … when I am in the hospital I use
the wheelchair … . When I am living with my relatives … I feel bad
when I look at their place and look at me. Because I can’t do much
housework at home, I have to crawl from here and there. I need a
wheelchair and I want to do my clothes business and, so I can’t do
it because there is no space, because so crowded in the house … I
used to sleep in the … sitting room, so I have to sleep when they all
finish watching TV at night.50

These experiences emphasize the value of leprosaria or specialist hospitals as

homes for the elderly with serious disabilities, and for some individuals with no
families who had felt unable to marry as they could not afford to raise a family.
The same situation existed for elderly leprosy sufferers who had spent most of their
lives in the leprosarium at Ducos, New Caledonia, so had totally lost contact with
their families.
However, the majority of Makogai patients who returned to their former
homes in Fiji, Vanuatu and Samoa had been able to marry and raise families,
although often their spouses were people who had also suffered leprosy. These
people had healthy children, and the adult children often cared for their parents in
old age, sometimes in the child’s home with their own family; but sadly some
elderly parents with disabilities were rejected by their children. Disabled leprosy suf-
ferers continue to be assisted by the PLF, both medically as well as with housing and
the payment of education fees for young children. Importantly, the PLF provides
assistance to leprosy sufferers to enable them to earn a livelihood, such as through
the provision of a fishing boat to fish for food or for sale or a copra hut, where coconuts
can be heated for production of coconut oil and copra for sale.51 The boat or hut is
also available for hire, further augmenting an income. Without the help of the PLF,
and its efforts to keep track of and assist discharged leprosy patients, those with phys-
ical disabilities would have been doubly disadvantaged in adjusting back to life outside
the hospital. Being resident at Makogai conferred the advantage of having ongoing
monitoring of their health and living standards as they adjusted to ordinary life.

49
Tevita W. Soko, 2004, transcript, 10, PLF oral histories, MB.
50
Salote Tiko, 2004, transcript, 5, PLF oral histories, MB.
51
McMenamin, Leprosy and Stigma, 67, 186.
356 THE JOURNAL OF PACIFIC HISTORY

EXPERIENCES POST-MDT TREATMENT

In order to counter resistance to dapsone, in 1981 the World Health Organization

(WHO) recommended the use of MDT which incorporates the addition of rifampicin
and clofazimine to dapsone. The enormous success of MDT again vastly improved the
lives of those who contracted leprosy. Nevertheless long-term leprosy patients con-
tinue to suffer the age-old plague of chronic ulcers due to repetitive actions upon
already anaesthetized limbs, especially the feet and fingers. The need for ophthalmic
and optometric care is common due to damage to the nerves of the eyes. Fortunately
today’s leprosy patients, or at least those who are diagnosed early and successfully
treated, should no longer have to face any of these later debilitating predicaments.
But older patients nevertheless continue to require special services, including amputa-
tions, a condition exacerbated in the Pacific Islands due to the high prevalence of dia-
betes. Therefore the provision of prosthetics and special shoes are essential aids for
those suffering the effects of leprosy and striving to lead relatively normal lives.
The South Pacific region continues to benefit from the efforts of several
leprosy organizations. The PLF, which in 2012 was awarded the international Lee
Jong-wook Memorial Prize for outstanding contribution to public health, has recently
been joined by the World Leprosy Mission in offering assistance to the region, while
Yohei Sasakawa through the Nippon Foundation has funded the free availability of
MDT worldwide.52 The islands visited for this oral history project have attained
the WHO elimination goal of no more than one case of leprosy per ten thousand
population.53 While this does not mean that leprosy has been eradicated, this achieve-
ment due especially to the excellent results achieved by MDT treatment, derives also
from the good support available right from the earlier time of leprosy care in lepro-
saria through to the present.
Nevertheless, the general public, and even many in the medical profession
who have never encountered leprosy, neither fully understand the disease nor recog-
nize how the medical environment has changed since the availability of MDT. Despite
widespread efforts to promote awareness and education, ignorance remains the key
cause of stigma and fear. So, irrespective of the huge medical improvement in the
lives of those who contract leprosy, strong residual stigma continues to affect patients.
The challenge therefore remains to raise public awareness of leprosy to counter
residual stigma, thereby ensuring that those at risk of contagion seek the necessary
care and treatment available, not ignore or hide their symptoms.
In an attempt to reduce stigma, in the 21st century a policy of treating leprosy
as ‘just another disease’ was implemented worldwide, the Pacific included. Until
recently, specialized leprosy services were available at clinics, and trained staff knew
how to treat the particular needs of patients, including regular debriding of chronic
ulcers to prevent recurrent infections, and several older patients expressed their appreci-
ation of these services. To normalize medical services for leprosy and change practices
that might otherwise sustain stigma, special leprosy clinics and wards have been closed,
52
WHO Goodwill Ambassador’s Newsletter for the Elimination of Leprosy, 56 (June 2012), 1, 7.
53
R.G. Farrugia, ‘Medical Reports Relating to Pacific Region’, McMenamin Papers, MB.
 OUT OF SIGHT AND OUT OF MIND 357

and people seeking treatment attend ordinary outpatient wards at hospitals. Unfortu-
nately it has been found that occasionally when medical care has been sought at
these departments, the unsightly manifestations of past leprosy have been wrongly per-
ceived by inexperienced staff or fellow patients as due to poor personal hygiene.
The cause of this misperception is the lack of both specialist leprosy
knowledge and need for wider recognition of the actual reasons why leprosy patients
need regular special medical care. Some patients have expressed shyness and even
shame which has prevented them from seeking medical assistance from inexperienced
medical staff. Even in Vanuatu, where leprosy stigma had been comparatively low, a
patient with plantar ulcers and long-term deformities to his hands recounted his
unfortunate experiences when seeking treatment at the general hospital:

[Through interpreter]: he will go to the hospital … sit there and wait

for an hour, and they won’t want to attend to him … So he says he
uses his own money to go to the pharmacy to buy bandages and all of
these things to dress his sores. He says, he feels shameful, he wants to
go to the bush.54

The shame felt by leprosy patients at public outpatient wards aggravates their difficult
situation. As the above former patient explained, he preferred trying to treat himself
rather than face ‘the looks’ by staff at the sight of his ulcers.55 These experiences justify
the apprehension expressed in 2006 by an elderly leprosy sufferer in Samoa,
concerned at the forthcoming closure of the leprosy clinic; he felt embarrassed to
approach medical staff unfamiliar with the conditions inherent in old leprosy, saying:
People are not happy to go to the outpatients … we can’t go to the
outpatients with our sores. People will talk about us. They will say
things behind us … and we can see it … we rather go in our own
clinic and have our dressings there.56

Whether these fears were unnecessary or whether in fact the outpatients’ staff in
Samoa were sufficiently trained to care for leprosy patients, are issues beyond the
scope of this project.
However, these personal accounts show how the change to inclusivity in the
medical environment, rather than separate specialized leprosy wards and clinics,
caused difficulties for some leprosy patients, especially members of the older gener-
ation already psychologically affected by earlier strong stigmatizing attitudes. It is
evident that elderly patients had internalized these old attitudes to the extent that
they did not wish to offend others. As one Tongan patient said, she preferred that
PLF fieldworkers no longer visited her home, as she thought this caused her neigh-
bours to think she still had leprosy; she would rather contact the PLF herself to
receive assistance, out of sight of her neighbours.57
54
Rocky Andrew, 2008, transcript, 2, PLF oral histories, MB.
55
Andrew, 2008, 2.
56
McFarland, 2006, 15.
57
MeleFononga, 2006, transcript, 4–5, PLF oral histories, MB.
358 THE JOURNAL OF PACIFIC HISTORY

Ironically, the success rate of MDT has given rise to a different but extremely
problematic scenario now faced by the younger generation of people contracting
leprosy. As a result of the success against the disease, general practitioners rarely
encounter leprosy and, due to its low visibility, they are now less likely to recognize
early symptoms. The long, slow incubation period, anything from one to 20 years,
does little to assist diagnosis. Yet a diagnosis made late usually fails to prevent
nerve damage that subsequently leads to permanent disabilities.
This failure due to the disease being ‘out of sight’ is evident in the testimony of
another two patients from Vanuatu who described the delay in the diagnosis of
leprosy. Despite complaints to health officials and exhibiting early symptoms of the
disease, both were diagnosed too late to prevent the consequence of disabilities
which must be borne for life. One was a married woman with four young children.
She had attended the hospital with early problems of numbness in her leg and foot,
but not until she was seen much later by the visiting PLF leprologist was leprosy diag-
nosed. As a result she suffers from a dropped foot that makes it difficult to walk, so she
cannot continue working in the market gardens to support her family.58 Another was a
family man who says he was exposed to leprosy in the 1970s but not until many years
later did he begin to feel unwell. He had regularly attended the hospital for other
health problems, including an irregular heartbeat, but leprosy was not diagnosed
until seven years later. The extent of the damage to his limbs suggests that leprosy
had been present long before diagnosis and treatment.59
These experiences convey a lesson for medical professionals and public health
workers in the South Pacific region: beware of ignorance and complacency in the
treatment of leprosy, because the risks associated with such a disease are devastating
for the victims. Leprosy awareness in New Zealand, for instance, because of extremely
low prevalence of the disease, is such that most general practitioners are totally unfa-
miliar with the disease. Typically, only after a patient presenting with early leprosy
symptoms, such as a skin rash on the limbs, torso or face has failed to respond to
skin ointments, is the case referred to a dermatologist. At this point the patient is
likely to be referred further to an infectious diseases section where leprosy is finally
diagnosed.60 For one patient, it was 18 months before leprosy was recognized and
appropriately treated.61 As the number of new leprosy cases decline, there is the
increased risk that inadequate medical responses to new patients will increase,
unless leprosy is kept firmly within the sights of the medical profession.

CONCLUSION

The principle ‘out of sight out of mind’ was regularly applied to the policy of isolation
a century ago. Indeed, the locations of many leprosaria were deliberately chosen to be
58
Vearu Stephen, 2008, transcript, 1–2, PLF oral histories, MB.
59
Andrew, 2008, 1‒3.
60
Pers. comm. Marilyn Eales, PLF board member and field worker in Auckland.
61
Marilyn Eales, ‘Address to Pacific Leprosy Foundation AGM’, 3 May 2006, PLF offices and MB.
 OUT OF SIGHT AND OUT OF MIND 359

‘out of sight’,62 allowing the public to forget the plight and miseries of people isolated
there. This policy of isolation is now a thing of the past and one of the special values of
the oral histories that have been preserved and discussed in this paper is that the
personal memories of Pacific people, whose lives have spanned the dramatic shift in
the treatment of the disease, have not been lost. Their recollections provide an under-
standing of the lived experience of leprosy in the southwest Pacific from before the
mid-20th to early 21st century. Importantly, the voices of these elderly men and
women who speak here also attest to the ambivalent experience of being patients in
both eras, before and after the availability of a cure.
The recent voices describe disturbing experiences that show how the disease
itself, rather than the patients, now runs the risk of becoming ‘out of sight and out of
mind’. Because leprosy can easily be missed by general medical professionals who
rarely encounter the disease, diagnosis is sometimes not made until irreversible
nerve damage has begun to occur. Achievement of the reduced prevalence of
leprosy has given the disease such a low profile, that early stages of the disease are
easily missed with often devastating consequences for those affected.

62
For concern about the visibility of leprosaria, see, for example, Stella, Makogai, 23‒4, 31‒2.
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