Lauren Graves

3/12/21

Indigenous Representation

The Oxford English Dictionary describes representation as “the act of presenting

somebody/something in a particular way” or “something that shows or describes something”

(OED). Throughout the quarter, we have discussed the idea of representation specifically as a

way to question “Who is being heard?” and “ Who is cared about in our society?” Our class,

while obviously focusing on people with disabilities, usually only intersected disabilities with

LGBT folks or POC, usually African Americans or Latinx people. Overwhelmingly, Indigenous

people with disabilities were not represented in this class and their identities were not reflected

in the course work. While Indigenous is hard to define, I am following the UN working groups

definition of Indigenous which is “those who have a historical continuity with pre-invasion and

pre-colonial societies that developed on their territories and consider themselves distinct from

other sectors of societies now prevailing in those territories” ( UN working group). While all

Indigenous people’s voices are important, I am focusing specifically on Indigenous PWD

residing in the United States and Canada. Throughout this essay, I will look at how Indigenous

PWD were represented in our course material, provide recommendations for articles to be

added to the curriculum and examine how the lack of representation of Indigenous PWD is not

class specific, but can be found in all aspects of life.

The first inclusion of Indigenous voices in our required readings arrives in week two of

the quarter with the work “Nothing About Us Without Us” by Dev Kumar Sunuwar. This article

describes the work of Pratima Gurung, who is advocating in her home country of Nepal. While

her work doesn’t directly impact Indigenous PWD in The United States and Canada, she does

provide guidelines for all Indigenous people in how they can become activists wherever they
are. She also discusses global work for Indigenous PWD and the push to make a forum for

Indigenous Disability groups from around the world to share their voices (Sunuwar, 2019). This

article does a great job of representation for a few reasons. First off, the main speaker is an

Indigenous advocate herself. Secondly, the entire article is Indigenous and Disability focused,

and focuses on a large amount of issues within the article. Lastly, it actually teaches people how

to be activists and what's important when discussing Indigenous people in a disability context.

The second inclusion… does not exist. No other required readings focused on

Indigenous voices. There were no scientific articles at all that's main focus revolved around

Indigenous PWD. Indigenous people are already underrepresented, those with disabilities are

basically invisible, even in a disability specific place such as this class.

The little representation I could find from our other material came from a chapter from

the book “Disability Visibility”. There is a single section that discusses the lack of representation

of Indigenous PWD, while the rest of the book revolves around other stories and Identities. We

never really brought up this book in class and whenever the book was mentioned, I cannot

remember a single person actually bringing up the chapter about Indigenous people with

disabilities. The essay “The Erasure of Indigenous People in Chronic Illness” by Jen

Deerinwater discusses the erasure of Indigenous PWD in the eyes of the government, the

healthcare system and the public (Deerinwater, 2020). This essay does a great job of explaining

the detrimental effects that not being represented has in all aspects of life. This is also a very

good piece of representation since it was written by an Indigenous person with disabilities and

details first hand accounts of being misrepresented and discriminated against.

Out of 60 required readings, only one was focused on Indigenous PWD. Out of 25

optional readings, only one was focused on Indigenous PWD. This means that less than 3% of

our class readings had a focus on Indigenous folks. That is not enough, and barely addresses

the struggles and barriers that Indigenous PWD face. It is especially not enough with the

recognition that Indigenous PWD face higher rates of functional limitations than other minority
groups, including African Americans with disabilities (Goins et al., 2007). The fact that so little

required readings discuss Indigenous PWD proves that this group is underrepresented.

So what's next? We have to include more articles that acknowledge the lack of

representation this group faces. As I was searching for articles to recommend for the class, I

noticed that most scientific articles revolving around Indigenous PWD were based in Australia,

and I really struggled to find any sources that would relate to Indigenous folks in the U.S and

Canada.

While overall there is a lack of scientific journals regarding Indigenous PWD in the U.S

and Canada, there are a few important articles that I think would be beneficial to add to this

class's curriculum. The Human Rights and Disability Advocacy book from 2013, has an entire

chapter on Indigenous PWD called “ Indigenous People with Disabilities: The Missing Link” this

book discusses the early convention of the rights of man and how it excluded Indigenous PWD.

It goes on to describe how this exclusion persists throughout further iterations of the convention

and how this further marginalizes an already marginalized group (Sabatello & Schulze, 2013). I

think this chapter would be a great addition for the first few weeks of class when students are

still learning about what disability is. The chapter breaks down important definitions such as

Indigenous and Disability using the U.N Work Group examples. It also discusses the CRPD and

SDG, and explains what they are, unlike the other texts from the beginning of the quarter.

Another addition I would recommend adding to the curriculum is “Disability Among Older

American Indians and Alaska Natives: An Analysis of the 2000 Census Public Use Microdata

Sample” (Goins et al., 2007). This article does a great job of putting in perspective how

Indigenous people are much more likely to have certain disabilities than other minority groups.

It's also a scientific article focusing on Indigenous groups which we haven’t seen from our class

this quarter. I recommend this article specifically because our class lacked scientific

representation in the talks of Indigenous PWD. I think reading a scientific article about this topic

would help young disability advocates see the kinds of things they could research in the future.
 Lastly, I think this class would benefit a lot from having a Indigenous guest speaker

participate in the conversation. Everyone we talked to this quarter was a scientist, and while

those voices are great, they aren't the people that are being misrepresented and forgotten in

society. Our campus is on Indigenous land and there are so many disabled Indigenous activists

that are wanting to be heard from. At the end of the day, I don't want this class and future

students in it to forget how important it is to have Indigenous voices represented.

Of course, our class isn’t the only place where Indigenous PWD are underrepresented.

In fact, this class is a very good reflector on sentiments as a whole in the United States in

Canada. The United Nations Human Rights Commision recently released an article

summarizing a UN talk at a general assembly in New York. There, people were discussing how

Indigenous voices were completely forgotten during the Covid-19 pandemic. Francisco Calí

Tzay explains that Indigenous people are diving more and more into poverty, malnutrition and

disability during the pandemic, but no laws or governments seem to care. He adds ”The

pandemic truly highlights how the failure to recognise the collective dimension of Indigenous

peoples' rights can result in many Indigenous communities being less resilient to the health and

economic impacts of the global crisis” (Tzay, 2020).This reveals just how important

representation is, and how a lack of representation can result in extremely negative outcomes

for entire communities.

Additionally, Indigenous voices are all too often left out of scientific articles. As I

mentioned before, there were no articles from this class that focused on Indigenous PWD in a

scientific format, and I struggled to find any outside of this class that were. I found an article

explaining why this might be. Indigenous people share information via storytelling passed down

from generation to generation. The scientific community often doesn’t care about this form of

information and if it’s not in a book then it doesn’t matter (Degawan, 2020). Elders are credible

to Indigenous people because of their lived experience, not because they published a book or
hold a PhD. This form of communicating knowledge in general is underrepresented in scientific

spaces.

It’s important that young disability advocates have a general understanding of how

Indigenous people fit into the world of disability. I really wanted to focus on this group because

Indigenous folks are almost always left behind or misrepresented in all areas of life from

healthcare, media and all the way to the government. I’ve noticed that most advocates focusing

on Indigenous PWD are Indigenous themselves, and while it’s great that they are being

represented in the work, I think that a lot more research and work could be done if more

Disability Advocates and workers from all backgrounds learned about the unique struggles that

Indigenous PWD face. Indigenous PWD shouldn’t have to stand alone in the fight for equal

accessibility.
Resources

Deerinwater, J. (2020). The Erasure of Indigenous People in Chronic Illness. In A. Wong (Ed.),

Disability Visibility: First-Person Stories From The Twenty-First Century (pp. 60-64). New York

City, New York: Vintage Books. Retrieved March 13, 2021, from

https://books.google.com/books/about/Disability_Visibility.html?id=oJLUzAEACAAJ

Goins, R. T., Moss, M., Buchwald, D., & Guralnik, J. M. (2007). Disability among Older

American Indians and Alaska NATIVES: An analysis of the 2000 Census public use Microdata

Sample. The Gerontologist, 47(5), 690-696. doi:10.1093/geront/47.5.690

Degawan, M. (2020, October 11). Subtle ways of excluding indigenous voices. Retrieved March

14, 2021, from https://www.iucn.org/news/commission-environmental-economic-and-social-

policy/202010/subtle-ways-excluding-indigenous-voices-0

Sabatello, M., & Schulze, M. (2013). Indigenous People with Disabilities: The Missing Link. In

Human rights and disability advocacy (pp. 157-169). Philadelphia, Pennsylvania: University of

Pennsylvania Press. Retrieved March 14, 2021, from https://ebookcentral.proquest.com

Sunuwar, D. K. (2019, June 01). Nothing about us without us: The struggle for inclusion of

indigenous women with disabilities. Retrieved March 13, 2021, from

https://www.culturalsurvival.org/publications/cultural-survival-quarterly/nothing-about-us-without-

us-struggle-inclusion-indigenous

Tzay, F. (2020, October 12). COVID-19: Indigenous Peoples' Voices Must be Heard, says UN

Expert. Retrieved March 14, 2021, from

https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=26374&LangID=E