The Canadian disability movement has been criticized as excessively focused on Euro-American knowledge, marginalizing non-Eurocentric perspectives from people of color (Chan, 2019; Bell, 2010; Galloway, 2001/2012). Although this Canadian movement is located on mostly un-ceded Indigenous land (and land ceded under duress), it is unclear what Indigenous individuals and organizations think about this social movement due to wide variability in opinion among Indigenous populations (Atherton, 2009; British Columbia Aboriginal Network on Disability, 2017; Stienstra, Baikie, & Manning, 2018). The uncertainty about this social movement is remarkable given Indigenous overrepresentation in the prevalence of mental health problems, traumatic brain injury, diabetes, HIV AIDS, and musculoskeletal disorders, among other impairments among this population, compared to non-Indigenous Canadians (Alexander, 2008; de Leeuw, Lindsay, & Greenwood, 2018; Kirmayer, 2007). Indigenous persons are disabled at rates twice the Canadian average, although this is a very rough estimation (Assembly of First Nations, 2017a). Accurate data is lacking regarding precisely how many Indigenous persons identify as also having disabilities (Assembly of First Nations; Quinlan, 2018).
Our central question is: How do Indigenous organizations and Canadian disability organizations think about Indigenous disability issues? We perform a secondary data analysis of the so-called grey literature, the written reports of thirteen (13) Indigenous organizations and Canadian disability organizations regarding Indigenous disability leadership. Within this analysis, we provide a case study of Assembly of First Nations documents and reports regarding disability. We find confusion about definitions of disability, the lack of disability services in First Nations and in the North, and the extreme marginalization of Indigenous women and 2SLGBTQQIA peoples with disabilities. We also find non-Indigenous disability organizations to be quite silent about Indigenous disability, with a few rare exceptions. The implications for both the disability movement and for Indigenous leadership regarding the broader issue of truth and reconciliation between settler and Indigenous communities are explored at the paper's end. We conclude the disability movement should listen to Indigenous communities and knowledge holders. Disability rights organizations can seek to be evaluated on their practices, like a student on a field placement, within a process of decolonial and Indigenous reconstruction utilizing a framework of Indigenous relationality (Rowe, 2022).
By Indigenous people, we refer to descendants of the earliest known inhabitants of a region who have been displaced or unethically controlled by a now-dominant settler group. The Canadian Encyclopedia stated, "Inuit and First Nations history extends well before the arrival of Europeans in Canada, while Métis emerged as a distinct culture after intermarriage between European settlers and First Nations people (2024)." These three groups, First Nations, Inuit, and Métis, have unique legal status under the Canadian constitution and are considered Indigenous to Canadian land. The Métis are people of mixed European and Indigenous ancestry with connection to the historic Métis nation, radiating from the Red River (now Winnipeg, Manitoba) Settlement (Gaudry, 2023). In the 2021 census, over 1.8 million people in Canada identified as Indigenous (Parrott, 2023).
In this article, we provide a brief history of the Canadian disability movement, including its ideology. We describe four ways that settler colonialism creates disability for Indigenous people. We then discuss some Indigenous perspectives on disability, which are significantly different from settler disability perspectives. We briefly describe the difficulties in both defining disability and collecting accurate information on how many individuals identify as being disabled and Indigenous. We then discuss the results of a secondary data analysis of the written reports and papers of Indigenous organizations and Canadian disability organizations regarding Indigenous disability leadership. Within this analysis, we discuss the results of a case study of Assembly of First Nations documents and reports regarding disability, specifically AFN's analysis of the Accessible Canada Act. Our overall thesis is that settler privilege discourages Indigenous leadership in the Canadian disability movement. We conclude the article discussing the material and legal gaps–and possible bridges–between settler disability activists and Indigenous communities.
Positionality
The primary author is Walter Wai Tak Chan, born in Hong Kong and living in Manitoba, Canada (within the Treaty One territory) for most of his life. He identifies as a Cantonese man with a disability and a user of psychiatric services. After having been nurtured on Indigenous land with many Indigenous people accessing Canadian disability organizations, Walter focused on the topic of Indigenous leadership after working within these organizations, noticing their predominant Whiteness and Euro-American roots. Treaty One territory, as well as Manitoba overall are located on the ancestral lands of the Anishinaabeg, Anishininewuk, Dakota Oyate, Denesuline and Nehethowuk Nations. It also is the homeland of the Red River Métis. Treaty One is an agreement regarding the sharing of land and resources, established on August 3, 1871, between the British Crown and the Anishinaabe and Mushkego Ininiw nations (Krasowski, 2019).
A Brief History of the Canadian Disability Movement
We start the paper with a brief history of the Canadian disability movement to illustrate the movement's political ideology. The movement emerged in the 1960s as people with disabilities, mostly those with physical impairments or mental illness, were released from state institutions, after which they gained a greater capacity to share experiences and develop their own organizations. They publicly expressed dissatisfaction, even anger, at those institutions (Chabasinski, n.d./2012; Enns & Neufeldt, 2003). Also, parents of Canadians with disabilities began to advocate for community services for their family members, building parent-led organizations that provided direct services, advocated for disability research, and, in some parent organizations, pushed for biomedical cures (Chan, 2019; Neufeldt, 2003). These two wings, deinstitutionalized people with disabilities and parents/relatives of those with disabilities, formed the modern Canadian disability movement. The confluence of both incremental reformism and passionate, radical thought between these two groups, complicated their merger. Oftentimes, they worked separately, each with their own goals, requiring a multitude of compromises to resolve their differences. This process, however, resulted in the ability to work cooperatively with the Canadian government and the health care institutions.
The Sixties were a time of foment with the rise of numerous liberation movements. In the neighboring United States, potent movements–anti-war, Black civil rights, feminism, Indigenous resurgence, queer liberation, and environmentalism–inspired and provided knowledge to equivalent Canadian social movements (Chan, 2019; Neufeldt, 2003; Pelka, 2012; Schweik, 2011; Staggenborg, 2012). The Canadian disability movement, like its American counterpart, challenged both conservative and liberal beliefs: a belief in rugged individualism and a belief that people are seen merely as individuals without considering their community or social contexts. The movement saw that people cannot only be individuals–they are nothing without a history, a context, and a social means for survival (e.g., disability services). However, in both countries, the movement accepted capitalism to be sufficient as a system for catalyzing human freedom and prosperity. Within the capitalistic perspective, significant positive changes for people with disabilities were viewed as being able to occur within the existing economic structures (Prince, 2004; 2012). In contrast with the capitalistic perspective, the Canadian disability movement emphasizes the uniqueness of each person, the distinctiveness of one's disability narrative, and their potential for growth. This all comports well with liberalism's focus on the uniqueness of the person which cries out to be realized (Axworthy, 2015).
Some have observed that the Canadian disability movement espouses a politics of social liberalism compared to the American one, which, in conformance with the prevailing political culture in that country, sides with classical liberalism (Lord, 2010). As political scientist Michael Prince (2012) stated, social liberalism is part of "the mainstream constellation" of Canadian values, and it "does generate critiques of capitalist relationships and sets some limits on market practices" (p. 15). Embracing reformism, Prince explained, the movement seeks to pursue its goals through democratic dialogue, careful research, and public awareness through education (p. 15). Lawful, nondisruptive routes for public participation–committees, public forums, working with local political representatives–are the ones commonly taken. Canadian disability activism sees a positive role for government (Prince, 2012). Activists see important roles for "the federal, provincial, and municipal governments in showing leadership, tackling obstacles, providing essential services and supports, and ensuring sustained efforts on reforms" (Prince, p. 15-16).
Historically, there has been little success building links between potential Indigenous leaders and the disability movement (Atherton, 2009; Stienstra, Baikie, Manning, 2018), although important bridge builders exist (e.g., British Columbia Aboriginal Network on Disability, 2017; Demas, 2010; Hockman, 2010). Consequently, Atherton (2009) has suggested that some disability activists have given up trying to connect with Indigenous communities.
The Colonial Production of Disability
Extant literature suggests that there are at least four ways in which Canadian settler colonialism has produced disability for Indigenous people (Kelm, 1998): forced removal from the land, introduction of church-run residential schools, outlawing of traditional healing, and ecological collapse. These four factors are material causes of disability in which the effects are manifested discursively and culturally, especially in Canadian stereotypes of Indigenous people (McCallum & Perry, 2018; Razack, 2015). The history of Indigenous disablement, accomplished by government policy, is integral to Canada's colonial legacy (Razack, 2015). The discussion below lays the groundwork for why the disability movement should engage with Indigenous leadership if the movement wishes to seriously engage in social policy.
Removal from the Land
First, the Canadian government severely restricted Indigenous people from hunting, fishing, farming, and gathering fruits, vegetables, and other materials from their traditional tribal territories. Canada relocated Indigenous communities to reserves, which were typically areas that were not wanted by settlers, where traditional hunting, fishing, and gathering practices were rendered ineffective and agriculture became less feasible due to the poor soil quality (Carter, 1990; Ray, 2011). Senier and Barker (2013) asserted that the long-term removal of Indigenous people from their traditional food supplies has produced epidemic levels of diabetes and autoimmune disorders (see Morriseau, 2019).
Church-Run Residential Schools
Second, church-run residential schools for Indigenous children began as early as the 17th century in small numbers, increasing in numbers during the 19th century ("Canadian Indian residential school system," 2025). They were mainly active after the Indian Act was passed in 1876, with attendance becoming compulsory starting in 1894 ("Canadian Indian residential school system"). The last federally-funded residential school closed in 1997.
Canadian officials took away Indigenous children and placed them into church-controlled schools, which were either day-operated or residential in structure. (Bear Paw Legal, 2016). Many were taken by force against their family's wishes by church staff and the Royal Canadian Mounted Police (Blackstock, 2009). Voluminous documentation exists of systemic violence within these church-run schools (Truth and Reconciliation Canada, 2015). The schools forced the children to convert to Christianity, forbade the use of Indigenous languages, and provided inadequate nutrition (Blackstock, 2009; Mosby, 2013). Physical and sexual abuse was endemic within the schools, perpetrated by teachers and clergy and among students through lateral violence. The churches and the government often ignored the responsibility to protect children, even denying them the basic need for adequate food (Truth and Reconciliation Canada, 2015). Given the schools' extremely negative, violent, social norms, many children learned to become abusers themselves and victimized their fellow students or younger children (Truth and Reconciliation Canada).
In the United States, the planner for the American boarding school system for Indigenous children declared that the intent was to "kill the Indian in him and save the man" (Pratt, 1892). The reality was that in both Canada and the United States, the mortality rates of Indigenous students in the schools were extremely high–approximately fifty percent at the worst schools (Mosby, 2013). The schools' abusive nature caused physical and psychological distress for children, and these adverse effects were transmitted intergenerationally, leading to poor health and disability within families for generations afterwards (Andrews, 2017; Kirmayer, 2007; Truth and Reconciliation Canada, 2015). Thus, church-run residential schools helped to create Indigenous disablement.
The Outlawing of Traditional Healing
The third colonial policy which produced Indigenous disability was the outlawing of Indigenous knowledge systems, including traditional healing practices (Kelm, 1998). Church doctrine had long considered Indigenous healing practices to be evil and devilish (Ray, 2011). In 1876, Canadian authorities through the Indian Act outlawed these practices and suppressed the use of Indigenous languages (Ray). This loss of Indigenous knowledge–whether transmitted through stories and oral traditions, written in scrolls, or encoded within landform symbolism, language, and healing practices–removed a powerful source of resilience that might have served to salve wounds, injuries, and distress (Absolon, 2009; Chandler & Dunlop, 2018; Kelm). The outlawing of traditional knowledge produced Indigenous disablement by preventing people in a grave predicament from relying on knowledge that for generations had provided meaning and offered protection.
Ecological Collapse
Fourth, the Canadian settler state radically altered the landscape and its ecology, starting from the east coast and the Great Lakes regions and extending to the prairies and western mountains. Mass immigration to Canada combined with the imperatives of modern capitalism resulted in grasslands turned into surveyed, apportioned farms, waterways once teeming with fish no longer so due to overfishing, and clearcutting forests, harming forest ecology and the world's overall carbon balance (Gray, Coates, & Hetherington, 2013; MacDowell, 2012; Ray, 2011). In many Indigenous belief systems, the land is considered an intimate part of human life (Adelson, 2000; Senier & Barker, 2013). Humans may be envisaged as one thread in the web connecting all one's relations (including insects, birds, large animals, trees, and very tiny creatures known as bacteria and germs) to oneself (Bear Paw Legal, 2016). Some Indigenous people experience ecological damage personally as a wound in one's relations with family and indeed as a personal disability (Bear Paw Legal; Kirmayer, 2007; Martel, 2015; Senier & Barker).
Canada and the United States sought to erase Indigenous communities by "waste-landing": demolishing crops, fields, and livestock, alongside violence against Indigenous women (Jaffee & John, p. 1414). Canada's relationship with the natural environment continues to be harmful, its resource extraction industry causing significant harm locally and globally, with Alberta oil sands symbolic of runaway climate change (Grey, Coates, & Hetherington, 2013). Currently, oil and gas developments contaminate the water system and the proximity of construction camps are correlated with increased rates of assault against neighboring Indigenous women (Christie, 2015; Jaffee & John; Stienstra, 2015; Thurton, 2018).
Indigenous Disability Demographics
There are major difficulties in both defining disability and collecting accurate information on how many people identify as being disabled within Indigenous communities. There are calls for disability to be defined from Indigenous perspectives (Quinlan, 2018, p. 8). However, some Indigenous organizations tend to fall back on defining disability in accordance to the assumptions of the medical model (Sinha et al., 2022).
The Assembly of First Nations (AFN) (2017e) carried out a literature review on disability issues pertaining to First Nations' interests and jurisdiction as part of its intervention into the then upcoming Canadian federal disability legislation. The AFN, established in 1982, is a gathering of First Nations in Canada with their chiefs serving as representatives. It found there was extremely limited information on the demographics of Indigenous people persons in relation to disabilities (see also Quinlan, 2018). The opinion offered was that Indigenous people experience a rate of disability almost twice the national average due to a higher rate of environmental and trauma-related disability. It should be noted that this statement must be viewed as an opinion, as there was no data to back up the claim (Assembly of First Nations, 2017e, Appendix D, p. 3). Also, within this report, the term disability was not defined. In the literature review (Assembly of First Nations, 2017e, Appendix D, p. 2), it stated that identifying Indigenous people with disabilities is extremely difficult, because individuals must identify both as Indigenous and as a disabled person, which are both difficult to define and come attached with stigma that deters individuals from embracing those identities. In addition, Indigenous persons with disabilities lag behind all other Canadians, except racialized persons with disabilities, in income (Crawford, 2010).
Effects
Indigenous people are overrepresented compared to other Canadians in in regards to mental health problems, diabetes, HIV AIDS, tuberculosis, and musculoskeletal disorders. The high frequency of Indigenous disablement results from Canadian government policy, especially post-Confederation (Daschuk, 2013; Kirmayer, 2007). Quinlan (2018) identified four current factors that increase the rates of disability for Indigenous people:
- a lack of access to quality health care, especially mental health services
- a high prevalence of chronic illnesses such as diabetes, and a high prevalence of infectious diseases such as HIV and TB
- alcoholism, Fetal Alcohol Spectrum Disorder, which are due to intergenerational trauma
- environmental, political, and economic factors such as poverty, malnutrition, poor housing, climate change, patriarchal colonial structures, and the systemic disempowerment of Indigenous women and girls (p. 5)
Indigenous Perspectives on Disability
Tallbear (2000) cautioned that the passage of time and differing cultural lenses would alter what one would see when examining a historical phenomenon. It would be unrealistic to judge an Indigenous practice existing two hundred years ago using contemporary concepts that would not have existed then. Thus, appraisal of Indigenous concepts of disability must be specific to a location, time, and people and one must refrain from overgeneralizing one's conclusions.
Senier (2013) quoted Mohegan medicine woman Tantaquidgeon Zobel's claim that "traditionally, disability was not seen as such" (p. 213). Senier suggested that for some Indigenous communities, disabled people were not marginalized, although she carefully did not generalize this claim to all Indigenous groups. She specified that specific Mohegan cultural practices allowed disability to be thought of as a matter-of-fact phenomenon or as a valued capacity. These traditional practices or identities took precedence over the disability idea.
Roberta Oshkabewisens, Anishinaabe ikwe and knowledge keeper, said the Old People suggested that disability is a gift (Disabled Women's Network of Canada, 2020). It is something that all of us may eventually have, while others may not have it. It opens up many doors to see what we cannot usually see, and it is a learning journey to understand ourselves and others who may be different from us. Sterling-Collins of the Nlha'kapmux Nation (2009), as the mother of a child with autism, viewed Indigenous disability as a holistic experience. Her medicine wheel teachings center Indigenous children with disabilities as spirit beings first and enables exploring the emotional and spiritual aspects of the disability experience, while integrating with the physical and intellectual. Although biomedicine and rehabilitation are very important, Sterling-Collins said that she required more holistic perspectives to be calm, grounded, and present. Like Roberta Oshkabewisens, she felt some individuals with disabilities can see what many others cannot or will not see. They may talk with spirit helpers, commune with family ancestors, or more readily possess a conduit to the spirit world in comparison to the nondisabled (Sterling-Collins).
Settler Perspectives on Disability
In contrast, the settler-oriented disability movement in Canada conceives of people with disabilities as urban dwellers and pays almost no attention to the interrelationships between humans, animals, land, sky, and water (Ray & Sibara, 2017). Many Indigenous communities would favor a more holistic perspective, consisting of ecological relationship and reciprocity, in accordance with traditional teachings and Indigenous knowledge systems. The historical fact is that severance from hunting and farming lands caused starvation and ill health (Adelson, 2000; Carter, 1990). This fact shapes the current state of Indigenous health and the politics of food for Indigenous communities. The disability movement assumes a liberal politics of citizen participation, wherein citizenship is assumed to derive from a history of immigration to Canada (Prince, 2012). An approach to Indigenous title and sovereignty, favored by substantial numbers of Indigenous people, makes the idea of subsuming one's political status within another minority group–a disability minority–quite unattractive (Borrows, 2016; Razack, 2015). Becoming a minority means being tied to the nation-state enterprise, for groups wanting to better integrate into the national community or as nascent nations seeking their own state (Williams & Schertzer, 2019). Many Indigenous leaders would reject the nation-state model in any way, while others seek it (de Bruin, 2019). Many Indigenous leaders might favor sui generis (unique) Indigenous collective rights while having a healthy respect for individual rights and minority politics, while simultaneously maintaining traditional governance systems such as clan deliberations in parallel with the Westminster-style parliament (Borrows, 2016; National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019). This is a problematic situation we will further discuss below.
In Canada, settler perspectives on disability typically fall into three main ideas: the medical model, the social model, and postmodern perspectives (Withers, 2012). All three perspectives have been influential in shaping the disability movement. The first two, the medical and social models, form the basis of Canadian disability legislation.
Canadian disability activism includes a Marxist, anti-capitalist wing. Herein, anarchism, or socialist libertarianism, and the influence of post-structuralism, mainly represented by Foucauldian ideals, have been influential and are deeply critical of capitalism (Withers, 2012). However, flagship disability rights organizations may also employ limited aspects of Marxist thought within mainly social liberal frames which do not tend to include postmodernists. However, academic disability studies engage significantly in postmodern ideas which eventually become influential in shaping grassroot activism (Tremain, 2015). Sadly, postmodern tendencies in disability activism have also often been colonialist in how they approach Indigenous knowledge systems (Tam, 2013). There are settler postmodernist activists who appropriate (i.e., steal) Indigenous shamanic knowledge as individual properties or commodities without any respectful engagement, observance of protocol, or community reciprocity (Tam, 2013). Within this group, Mad activists who claim their bipolar or other neurodivergent experiences give them direct access to Indigenous knowledge systems fall into this unsavory pattern of theft and colonial usurpation (e.g., McNamara & DuBrul, 2006).
All three ideas are anthropocentric and typically ignore ecological relationships (or approaches ecological relationships in a disrespectful way). For Canadian settlers, rights, like in the social model of disability, are about humans. In contrast, for many Indigenous nations, rights and treaties are also about how one treats and relates to the land and to our nonhuman relatives (Science Teachers' Association of Ontario, 2018). Despite the purported humanistic perspective of disability rights, we argue that settler privilege discourages Indigenous leadership in the disability movement.)
Secondary Data Analysis of the Reports in Indigenous and Canadian Disability Organizations
We analyzed the content of twenty-two documents and reports from thirteen Indigenous and Canadian disability organizations regarding the topic of Indigenous disability leadership, as made available in each organization's website (see Appendix). The earliest document was from 1998 and the latest from 2022. These reports (webpages, annual reports, discussion papers, research papers, policy papers, educational videos) are considered grey literature. Grey literature is material produced outside of academic and commercial publishing, typically government reports and reports by non-profit and for-profit organizations. Grey literature is also typically not peer reviewed. This material was analyzed for themes relating to Indigenous disability issues and leadership, which was then organized into three groups: findings which demonstrate Indigenous marginalization and settler privilege and their ignorance of Indigenous rights, those which do not demonstrate the above, and unique, unexpected findings.
The documents and reports were chosen from organizations which provided relevant, publicly available reports on their website. These included national organizations such as the Council of Canadians with Disabilities (CCD), Disabled Women's Network Canada (DAWN), the National Network for Mental Health (NNMH), Assembly of First Nations (AFN), the National Inquiry into Missing and Murdered Indigenous Women and Girls (NIMMIWG), Native Women's Association of Canada (NWAC), and the Truth and Reconciliation Commission of Canada (TRC). Also included were regional or local organizations such as the Assembly of Manitoba Chiefs (AMC), British Columbia Aboriginal Network on Disability Society (BCANDS), Downtown Eastside Women's Center (DEWC), Ka Ni Kanichihk, and the Southern Chiefs' Organization (SCO).
CCD is Canada's flagship disability rights organization, focused on law reform. It tends to work closely with the federal government in Ottawa. DAWN is a feminist organization of Canadian women with disabilities. It has a track record of working with Indigenous leaders and racialized communities and sexual minorities who are uniquely isolated and impoverished. AFN is an assembly of First Nations (Indigenous bands) represented by their chiefs, subject to Canada's Indian Act. It depends upon Ottawa for most of its funding. Despite the centrality of representation of indigenous groups within the AFN, it has come under fire from others within the Indigenous community. For example, Sheila North, a journalist and leader from the Bunibonibee Cree Nation, has stated "We need a national chief who can sit at the table with the Liberals without becoming one" (cited in Watts & King, 2018). North appears to be criticizing the AFN for being out of touch with the people it represents and even for being a collaborator with the colonial masters in Ottawa, be they the Liberal Party or another Canadian establishment polity.
Although not an organization per se, the NIMMIWG was a Canadian national public inquiry reviewing law enforcement documents and the products of community hearings on the issue of missing and murdered Indigenous women and 2SLGBTQQIA people, many of whom identify as people with disabilities. The inquiry was established independently from the federal government. It concluded Indigenous women and 2SLGBTQQIA peoples face systemic violence due to the intersection of violent oppressions. The National Inquiry (2019) called it a genocide against Indigenous people:
So why is it so important to understand the history of genocide in Canada? Because it's not history. Today's racist government laws, policies and actions have proven to be just as deadly for Indigenous peoples as the genocidal acts of the past. What used to be the theft of children into residential schools is now the theft of children into provincial foster care. What used to be scalping bounties are now Starlight Tours (deaths in police custody).… Racism for Indigenous peoples in Canada is not just about enduring stereotypical insults and name-calling, being turned away for employment, or being vilified in the media by government officials–racism is killing our people. (Palmater, 53)
NWAC is an aggregate of Indigenous women's organizations coast to coast. Almost entirely funded by Ottawa, it works for the wellbeing of Indigenous women and 2SLGBTQQIA peoples. The TRC, a national commission active from 2008 to 2015, studied the impact of the Indian residential school (IRS) system. It documented the IRS's disabling conditions, which some would charge were less about education than about the eradication of indigenous populations, and its long-term health impacts on Indigenous communities, among other things.
The AMC represents all 63 First Nations in Manitoba (a Canadian province). BCANDS, also called Indigenous Disability Canada, is a national Indigenous non-profit organization, based in Victoria, British Columbia. It provides disability support and advocacy to Indigenous individuals. It also holds Special Consultative Status with the United Nations. DEWC, based in Vancouver British Columbia's downtown east side, is a feminist organization which provides a safe space for women and 2SLGBTQQIA peoples. DEWC is known for its focus on Indigenous women's advocacy. It is funded by the government and private foundation grants.
Overall, the documents and reports contained widely varying perspectives, yet some consistent themes were identified. Some reports showed creative, critical, and in-depth engagement with definitions of disability, whereas most reports uncritically adopted government or medical definitions on disability. The Indigenous organizations asserted that disability concepts ought to be congruent to Indigenous worldviews, but often did not purposefully state what disability specifically means for Indigenous individuals and communities, even where underlying Indigenous worldviews were discussed. Issues of definition remained muddy, except when Canadian government definitions were stated. Most reports emphasized the central importance of collecting accurate data on the rates of impairment and disability for Indigenous people and specifically for Indigenous women, girls, and gender-diverse people. Reliable data was lacking on just how many Indigenous people identified as persons with disabilities.
Several reports concluded that Indigenous individuals with disabilities who reside on reserve or in the North experience immense difficulties acquiring the services they require in their home community, forcing many to move to urban centers in the hopes they will receive better care. Yet, urban-dwelling Indigenous people experience challenges when accessing disability services, because of the stigma and discrimination present in urban settings and within the service programs themselves (Assembly of First Nations, 2017a, p. 28).
The Assembly of First Nations (2017a) asserted, drawing from a Saskatchewan study, that many Indigenous people experience cultural shock upon moving to the city for medical services and disability services. There is double stigmatization from both being Indigenous and being disabled and faced with paternalizing attitudes. Also, many First Nations people living off-reserve can be excluded from band funding. There appears a great need for Indigenous organizations to provide culturally safe supports and services for urbanized Indigenous individuals with disabilities.
Regarding Indigenous women, girls, and gender-diverse persons with disabilities, several reports asserted that colonization has created an environment where Indigenous women are politically disenfranchised and economically marginalized, more so than Indigenous men (Quinlan, 2018, p. 6). This situation is exacerbated when an Indigenous woman, girl, or gender-diverse person is living with a disability, meaning that not only are they excluded from decision-making positions, they are often forced into economically and socially vulnerable positions (Gehl, 2020; Martin & Walia, 2019; Quinlan, p. 6). There was a strong assertion that an intersectional lens is necessary to understand these complexities (National Inquiry into Missing and Murdered Indigenous Women and Girls, 2019). Some Indigenous women with disabilities survive extreme marginalization and horrific violence. One quote from a woman living in Vancouver's Downtown East Side (DTES) illustrates this problem:
My name is DJ Joe. I have lived in the DTES for 29 years, and I am a friend and street mother to many young girls. I came in 1989 from Tacoma. My cousin was murdered in the Roosevelt in the DTES. My cousin left behind three kids. It's still an open case. I came to identify her body and I stayed here ever since. This is home now. I am in my 50s and I have had two strokes. My two street moms have already passed away. (Martin & Walia, 2019, p. 11)
These reports also more fully delineate disabled Indigenous women's political and economic marginalization, limiting their access to the necessary supports and services that would have reduced the impact of disability barriers. Colonization was seen as "largely responsible for the overthrowing of Indigenous forms of governance and self-determination, such as the dissolution of Indigenous matriarchies and the traditional positions of persons with disabilities in communities" (Quinlan, p. 6). The reinvigoration of matriarchal roles for Indigenous women with disabilities appears necessary for the empowerment of these women, as well as to take down societal barriers and provide a safe space for future generations (Martin & Walia, 2019).
Of the four national disability movement organizations, only one, Disabled Women's Network Canada (2020) provided original content on Indigenous leadership (a video and several short articles) including analysis and interpretation. The video and articles explained an Anishinaabe approach to disability, as a spirit gift, a teaching (sometimes a very hard teaching), and a doorway into alternate worlds. The Council of Canadians with Disabilities offered reports primarily describing the demographics of Indigenous health and impairment. However, although they examine at census data, they lack substantive discussion of the census findings. Neither Independent Living Canada or the National Network for Mental Health offered original reports regarding Indigenous disability leadership. Instead, the latter's content was drawn from newspaper articles, while Independent Living Canada documents did not mention culture or ethnicity at all, seemingly striking a culturally neutral pose.
Assembly of First Nations: Mini-Case Study of Documents and Reports
We chose the Assembly of First Nations (AFN) documents and reports as an Indigenous disability leadership mini-case study. This was because of the number of materials available and the depth of discussion contained therein, with more than fourteen discussion guides, reports, and chiefs' resolutions (although not all were used for this study). The AFN discussion guides contained opinions and expertise garnered in coast-to-coast webinars from Indigenous people with disabilities and service providers (Assembly of First Nations, 2017a). Similar to our own assertions, the AFN reports claimed that the enormous economic gap between Indigenous people and the non-Indigenous is due to the exclusion of Indigenous communities from the economic life of the rest of Canada (Assembly of First Nations, as cited in Assembly of First Nations, 2017e, Appendix D, p. 8). Through the Indian Act, loss of land, placement onto marginal lands, the apartheid pass system, restrictions on commerce and trade (wherein all commerce must proceed through the Indian agent), and prevention of access to legal representation – all these factors laid the groundwork for the disability and marginalization of Indigenous people.
For instance, the Canadian state often forced Indigenous communities to relocate into reserves on areas that had poor soil or were flood-prone, making it difficult to develop a stable and profitable way of life (Gowriluk, 2022; University of Winnipeg, 2019). In the Ojibway language, reserves are called Ishkonigan, or "leftover land". Canada developed an apartheid pass system in 1885, a process by which "Indigenous people had to present a travel document authorized by an Indian agent in order to leave and return to their reserves. The pass system was a way of controlling the movement of Indigenous people" (Nestor, 2018). It has had "lasting impacts on generations of Indigenous people, as restrictions on mobility caused damage to Indigenous economies, cultures and societies" (Nestor). The pass system was phased out in the early 1940s.
The AFN reports, citing activist Doreen Demas and AFN Chief Perry Bellegarde, supported a human rights framework for disability, including a social model of disability. The AFN reports emphasized "the reality of living in the north is quite different than the south" because the North had significant limitations in medical care, other services, transportation, housing, and store-bought food in both cost and quality (Assembly of First Nations, 2017a, p. 7). The reports emphasized that Canadian disability policy and legislation must be founded upon treaty rights (Assembly of First Nations, 2017a, p. 26-27) wherein Canadian disability policy should not supersede the sovereignty and inherent rights of Indigenous communities and governance systems.
One finding differed from our paper's argument that settler privilege discourages Indigenous leadership in the disability movement. The Assembly of First Nations (2017a) emphasized the central importance of Indigenous peoples accessing the labor market and employment. In the report and its appendices, the word employment was written 126 times. The message seemed to be that holding a paying job was central to the health and happiness of disabled persons, including Indigenous persons. Although it would require further interview data and archival research to find a precise answer, we can provide some reasoned opinions as to why holding a paying job seems so important for the AFN. Observers have identified AFN's liberal, Ottawa-friendly orientation, likely due to its primary source of funding by the Canadian government (de Bruin, 2019; Watts & King, 2018). Canada's liberalism is predicated on a competitive job market, which is held to be central to a good life, and the AFN's compromise with Ottawa likely sees labor market participation as one of the best ways Indigenous individuals can overcome their economic disparity. Accordingly, the AFN appears to suggest plans for Indigenous individuals to be healthy–when appropriate accommodations for their disability are made–workers.
A unique finding was the reports' opposition to aspects of the Accessible Canada Act (ACA), a federal disability rights legislation that has been supported by the Canadian disability movement. The crux of the argument lay in the conflict between individual rights and Indigenous peoples' collective historical circumstances. The Assembly of First Nations (2022) recognized that while the ACA had valid legislative intentions, it is problematic because "it uses a human rights focused lens with respect to disability as distinct from First Nations' right to self-govern according to their customs, traditions, and values. This lens fails to consider the unique circumstances of First Nations underfunding and the disproportionate percent of Indigenous people with disabilities compared to the average percent of Canadians with disabilities" (p. 6). That is, while Indigenous peoples are more likely to be disabled than non-Indigenous Canadians, many of these disabilities are a direct result of Canada's colonial policies, including residential schools, which have left them with mental or physical impairments (p. 6). Furthermore, the report stated, the ACA did not consider the history of colonialism. For example, the Indian Act impeded economic opportunities for Indigenous communities, leaving them "with a lack of ability to become a fully accessible First Nation with all essential services" (Assembly of First Nations, 2022, p. 6). The ACA also did not consider what it said is an Indigenous strength-based disability lens–"that persons with disabilities are in a position of power and to be respected as fully First Nations citizens" (p. 6).
Furthermore, the AFN pointed out that the ACA contained no funding for Indigenous communities to become fully accessible (Assembly of First Nations, 2022, p. 8). Chronic and "systemic underfunding of First Nations health, infrastructure, and housing services and programming means that First Nations often fall short of what is considered an acceptable standard" (p. 8). Without "the provision of a means for First Nations becoming accessible, the ACA is setting up First Nations to fail" and be punished by the ACA's enforcement regime (p. 8). Thus, it seemed that the ACA's human rights lens can actually be in a punitive manner towards Indigenous communities, because the human rights approach does not consider the diminished economic capacity due to land loss and historical trauma. In addition, the human rights approach fails to recognize Indigenous collective rights.
Conclusion
From this survey of grey literature, we can see the definitions of disability paired with Indigeneity being quite unsettled. There is some doubt as to what exactly is meant when we refer to Indigenous disability. Indigenous organizational reports illustrated the geographic and cultural divide between the service-scarce North and on reserves (Indigenous majority) and urban Canada (Indigenous minority). Indigenous women and girls with disabilities seem especially marginalized, facing a triple jeopardy of racism, sexism, and ableism–plus classism–within a Canadian state that has relentlessly attacked Indigenous women's political power (Demas, 2010; Martin & Walia, 2019). Canada's dissolution of Indigenous governance and legal systems also meant the displacement of people with disabilities from their traditional and valued roles in many Indigenous communities. We see disability movement organizations maintain their historic focus on disability rights and Canadian federalism, while some adhere to a façade of cultural neutrality. Conversely, AFN would like disability rights explicitly linked to treaty rights, a very important conversation in our opinion.
Thus, the disability movement seemingly battled two conflicting perspectives from within, one highly settler-focused and the Indigenous worlds and worldviews largely separate from it. It is significant to note that both the British Columbia Aboriginal Network on Disability (2017), in their work on Indigenous perspectives on the United Nations Convention on the Rights of Persons with Disabilities, and the Native Women's Association of Canada have strongly engaged with disability rights. This diverges from the general trend in which the disability movement leadership and its ideas fails to engage with Indigenous worldviews.
Moreover, the disability movement depends on the Canadian government to legitimize and fund its activities (Chan, 2019; Prince, 2009). The movement customarily assumes Canada to be the true and rightful sovereign, although we saw in the secondary data analysis the beginning of a tendency to recognize Indigenous sui generis rights (Disabled Women's Network Canada, 2020). We can see these state-centric politics alienating many Indigenous leaders who feel that Canada, far from being a benevolent ruler, to be chief cause of the ill health and distress among Indigenous populations (Cowie 2021; de Leeuw, Lindsay, and Greenwood 2018). Settler colonialism has deeply wounded Indigenous cultures and families (Blackstock 2009; de Leeuw, Lindsay, and Greenwood; Thomas-Muller 2011, 2017, 2021). To paraphrase Professors Chandler and Dunlop (2018), cultural wounds require cultural medicine. That is something the disability movement does not yet know how to discuss, let alone address (Chan 2019; Chandler and Dunlop 2018).
For the disability movement, we believe it needs to plan to support urban Indigenous people with disabilities, after first listening to Indigenous organizations regarding community needs and Indigenous laws. According to the grey literature, it would appear that disability rights groups seem to expect Indigenous people to have more or less the same needs as non-Indigenous people with disabilities. Even if Indigenous needs may be somehow different, there seems to be an expectation for Indigenous people to adhere to a "voices of disabled people" paradigm, as if from a singular identity. It is another way of saying that Indigenous people ought to fit into Canada's existing programs (disability studies journal personal communication, October 7, 2024). There is much evidence to suggest these programs, whether medical services or disability movement-run services, as we read in the AFN reports, are culturally unsafe, and at times lethally unsafe in terms of gross medical neglect, for Indigenous individuals (Bell, 2010; Brian Sinclair Working Group, 2017; Canadian Broadcasting Corporation, 2014; McCallum & Perry, 2018). Urban Indigenous organizations are often overstretched in what services they can provide (Manitoba Keewatinowi Okimakanak, 2023). Nonetheless, the experience and knowledge disability rights programs have in securing entitlements for individuals and communities can be highly helpful. We suggest disability organizations dialogue with BCANDS, Indigenous organizations, and First Nations to offer their assistance in advocacy and program development. At the same time, they should be careful to come into the conversation as a humble learner, because, as we have shown in this paper, disability rights organizations may be quite uneducated of many aspects of Indigenous history, relationality, and knowledge systems (Block, Kasnitz, Nishida, & Pollard, 2016).
We suggest little of that dialogue will start if the disability movement remains stubbornly fixated on its social model of disability, without simultaneously engaging in complementary ideas regarding intersectionality and the historic treaty relationships between settlers and First Nations. Despite the moniker of social in the social model, it has become in North America a rather individual-focused endeavor, reworked into the "independent living philosophy." Under that name, although individual rights within a social liberal ideology are central, the disability movement has great difficulty grasping the notion of collective Indigenous rights (Prince, 2012). NIMMIWG strongly suggested employing an intersectional lens in working with Indigenous women. Disability rights' notion of a singular disability identity, applicable for all, tends to erase Indigeneity, inscribing instead the "White" settler norm (Bell, 2010; Nyaga, 2019). It can be experienced as a form of epistemic violence (Dei, 2021). There is, we believe, no such thing as disability identity without gender, "race"/ethnicity, class, sexuality, and so forth. Disability rights organizations will have a lot of work to do in beginning these dialogues on intersectionality, in challenging ingrained assumptions, first internally, then engaging with partner organizations as well as with Indigenous organizations. Notably, we observe DAWN Canada embarking upon this intersectional journey, even as we see other disability organizations lagging behind. Regarding engaging in collective rights, the disability movement might start by first listening–to Indigenous systems of sharing, land tenure, and diplomacy with the human and nonhuman nations (University of Winnipeg, 2017, 2019). Activists can attend workshops on Indigenous laws (there are distinct systems of law for each Indigenous nation), living tree jurisprudence, and Indigenous constitutionalism and thereby start to form relationships (Borrows, 2016; Makokis, 2008; McAdam, 2015; University of Victoria, 2018).
There is also the need for disability rights organizations to go beyond an anthropocentric, urban-focused concentration and address the relationships between humans and natural ecology. We derived this conclusion from our own knowledge and teachers (R. Oshkabewisens, personal communication, January to December 2023) and from the Indigenous disability literature (Disabled Women's Network of Canada, 2020). They can learn from Indigenous organizations providing workshops and ceremonies regarding ways in which disabilities/exceptional abilities allow us to see what for many is the unseen and to permit a unique conduit to the spirit world. There are also laws of kinship amongst humans and between humans and more-than-human entities which guide the conduct of Creation; in Cree, these laws are called Wahkohtowin (Bear Paw Legal, 2016; Makokis, 2008). Medicine wheel ways of working with individuals who desire healing are specific to each nation and are interconnected to the seasons of life, the sky earth and water, and the various animate and inanimate kingdoms (Marlene Syrette, personal communication, Batchewana First Nation, March 13, 2024). Disability rights advocates ought to learn from these approaches to gain an elementary understanding of Indigenous ethics and a holistic approach which would benefit anyone (Brave Noisecat, 2018).
Indigenous women and 2SLGBTQQIA's political empowerment are vital, we believe, for improving the life of Indigenous people with disabilities, following the findings of the NIMMIWG and DEWC reports. It is an area of treaty rights and Indigenous political traditions and laws which center the role of women and 2SLGBTQQIA. Perhaps one way for the Canadian disability movement to support women and 2SLGBTQQIA resurgence is to engage in a process of decolonial and Indigenous evaluation of disability rights programs, led by Indigenous matriarchs and two-spirit persons (Makokis, 2008; Makokis, 2021; Rowe, 2022). It is a process rooted in Turtle Island Indigenous ways of being, knowing, and doing, knowledge bundles, and women's and two-spirit lodges (Rowe, 2020; Rowe & Kirkpatrick, 2018).
AFN's disagreement over the ACA seems emblematic of Canada's conflict with First Nations and Indigenous communities. While Canadian activists support the ACA's disability rights standards and want to move forward in achieving it, the AFN argued this legislation will in effect punish First Nations by providing no material support to achieve those standards yet expecting them to achieve the same outcome. As an aside, the AFN seemed both to endorse the importance of jobs for Indigenous communities and simultaneously the need for entitlements, which for some observers constitutes a robustly social liberal position. The ACA did not consider and account for the historical causes of the health disparity between Indigenous and non-Indigenous people, which are at root the causes of the economic inequality between them. Thus, the ACA did not adequately consider the treaty relationship and treaty rights. It specifically did not consider the treaty provisions for health and economic life. The spirit of the treaties, a spiritual covenant between two nations and the Creator, flows on (Alberta Council of Women's Shelters, n.d.). Perhaps the disability movement, if not Ottawa as well, should listen. It is incumbent upon disability activists to listen to the treaty conversation, the ceremonies, and the political thought underlying these treaties for them to begin to be good citizens of Indigenous territories (Borrows, 2016; Yellowhead Institute, 2019).
Acknowledgements
While writing this paper, the author has been humbled in recognizing there is so much about the topic he doesn't know. He wishes to acknowledge the immense help he has received from Manitoba Indigenous communities and individuals, in particular: Daly de Gagne, Don Cardinal, Donna Bear Glover, Roger Roulette, Dawnis Kennedy, Gladys Rowe, Darryl Sinclair, and Derek Sinclair.
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- University of Winnipeg. (2019). Nisitohtamowin askihk ohci: Understanding from the land through application of biophysical tools to support First Nations land management. https://www.uwinnipeg.ca/indigenous/weweni/weweni-2018/nisitohtamowin-askihk-ohci-understanding-from-the-land-through-application-of-biophysical-tools-to-support-first-nations-land-management.html
- Watts, V., & King, H. (2018, July 26). After AFN national chief election, apathy and resignation remain. The Globe and Mail. https://www.theglobeandmail.com/opinion/article-after-afn-national-chief-election-apathy-and-resignation-remain/
- Williams, M., & Schertzer, R. (2019). Is Indigeneity like ethnicity? Theorizing and assessing models of Indigenous political representation. Canadian Journal of Political Science, 52(4), 677-696. https://doi.org/10.1017/S0008423919000192
- Withers, A. (2012). Disability politics and theory. Halifax, NS: Fernwood.
- Yellowhead Institute. (2019). Land back: A Yellowhead Institute red paper. https://redpaper.yellowheadinstitute.org/wp-content/uploads/2019/10/red-paper-report-final.pdf
Appendix: List of Organizational Documents
- Assembly of First Nations. (2016). Submission of the Assembly of First Nations to the United Nations expert mechanism on rights of Indigenous peoples: Study on the right to health and Indigenous peoples with a focus on children and youth. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017a). First Nations and First Nation persons with disabilities engagement on federal accessibility legislation. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017b). Appendix A: Federal accessibility legislation: Potential implications for First Nations and First Nations persons with disabilities. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017c). Appendix B: Environmental scan: First Nations and First Nations persons with disabilities. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017d). Appendix C: Discussion guide: What does an accessible First Nations mean to you? Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017e). Appendix D: Literature review pertaining to First Nations persons with disabilities in anticipation of federal accessibility legislation. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2017, December 5). Distinct First Nations accessibility legislation. Resolution 98/2017. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2018, July 24). Increased focus on disabilities centered on human rights. Resolution 24/2018. Ottawa, ON: Assembly of First Nations.
- Assembly of First Nations. (2022). A distinct First Nations accessibility law discussion guide: Draft for discussion. Ottawa, ON: Assembly of First Nations.
- British Columbia Aboriginal Network on Disability. (2017). National Indigenous federal accessibility legislation consultation. Victoria, BC: British Columbia Aboriginal Network on Disability. http://www.bcands.bc.ca/wp-content/uploads/BCANDS-January-March-2017-Accessibility-Consultation-Report.pdf
- Crawford, C. (2010). Disabling poverty & enabling citizenship: Understanding the poverty and exclusion of Canadians with disabilities. Winnipeg, MB: Council of Canadians with Disabilities.
- http://www.ccdonline.ca/en/socialpolicy/poverty-citizenship/demographic-profile/understanding-poverty-exclusion
- Disabled Women's Network Canada. (2020). Indigenous disability awareness month [Video]. https://dawncanada.net/issues/idam2020/
- Federal/Provincial/Territorial Ministers responsible for social services. (1998). In unison: A Canadian approach to disability issues. Hull, QC: Human Resources Development Canada.
- Gehl, L. (2020). Indigenous women and girls with disabilities are targets of sexual violence. https://dawncanada.net/news/idam-lynn-25-11-2020/
- Independent Living Canada. (2015). Independent Living Canada annual general report 2014-2015. https://ilc-vac.ca/wp-content/uploads/2021/09/annual_report_2014-2015-1-.pdf
- Ka Ni Kanichihk. (2022). 2021-2022 annual report. Winnipeg, MB: Ka Ni Kanichihk. https://www.kanikanichihk.ca/wp-content/uploads/2022/10/Ka-Ni-Kanichihk-Annual-Report-2021-2022-Digital.pdf
- Quinlan, L. (2018). Accessibility and disability for Indigenous women, girls, and gender diverse people: Informing the new federal accessibility legislation. Gatineau, QC: Native Women's Association of Canada.
- Martin, C., & Walia, H. (2019). Red women rising: Indigenous women survivors in Vancouver's downtown eastside. Vancouver, BC: Downtown Eastside Women's Center.
- National Inquiry into Missing and Murdered Indigenous Women and Girls. (2019). Reclaiming power and place: The final report of the national inquiry into missing and murdered Indigenous women and girls. https://www.mmiwg-ffada.ca/final-report/
- Sinha, V., Sangster, M., Gerlach, A.J., Bennett, M., Lavoie, J.G., Lach, L., Balfour, M., & Folster, S. (2022). The implementation of Jordan's Principle in Manitoba: Final report. Winnipeg, MB: Assembly of Manitoba Chiefs.
- Southern Chiefs' Organization. (2021). Survey report on the calls for justice of the national inquiry into missing and murdered Indigenous women and girls. Headingley, MB: Southern Chiefs' Organization. https://scoinc.mb.ca/wp-content/uploads/2021/10/SCO-MMIWG-Report-Final.pdf
- Truth and Reconciliation Commission of Canada. (2015). Canada's residential schools: The legacy. The final report of the Truth and Reconciliation Commission of Canada Volume 5. Montreal, QC: McGill-Queen's University Press.
- Truth and Reconciliation Canada. (2015). Honouring the truth, reconciling for the future: Summary of the final report of the Truth and Reconciliation Commission of Canada. Winnipeg, MB: Truth and Reconciliation Commission of Canada.