Decolonizing disability: Teachings from Tx̱eemsim and voices from the lands of the Nisg̱a’a Nation

Décoloniser le handicap: Enseignements de Tx̱eemsim et voix des terres de la nation Nisg̱a’a

Rheanna E. Robinson, Ph.D.
Associate Professor First Nations Studies
University of Northern British Columbia

rheanna [dot] Robinson [at] unbc [dot] ca

Abstract

Indigenous perspectives regarding disability are underrepresented in scholarly literature. This article profiles traditional perspectives and contemporary experiences regarding disability through voices from the lands of the Nisg̱a’a Nation. Influenced by Indigenous theory, this case study is based on semi-structured interviews with six diverse Indigenous community leaders including Simgigat (Hereditary Chiefs) and Sigidim Haanaḵ’ (Matriarchs). Four themes emerged: (1) Indigenous laws and cultural protocols enact principles of equity and inclusion; (2) language, kinship, and culture inform Indigenous perspectives regarding disability; (3) the gift of disability is celebrated through storytelling; and (4) colonization has negatively impacted disability for Indigenous Peoples. In addition, this study demonstrates that further research is needed on contemporary and historical disability policy in the Indian Act and disabilities in the context of Indian Residential Schools. This research considers the imposition of Western and colonially constructed disability identities while demonstrating that Indigenous knowledges, traditions, and practices are crucial to decolonizing understandings of disability in Canada and around the world.

Résumé

Les perspectives autochtones concernant le handicap sont sous-représentées dans la littérature scientifique. Cet article présente les perspectives traditionnelles et les expériences contemporaines concernant le handicap à travers des témoignages de personnes venant des terres de la nation Nisga’a. Influencée par la théorie autochtone, cette étude de cas est basée sur des entretiens semi-structurés avec six dirigeants communautaires autochtones divers, dont Simgigat (chefs héréditaires) et Sigidim Haanaḵ’ (matriarches). Quatre thèmes ont émergé : (1) les lois et les protocoles culturels autochtones édictent des principes d’équité et d’inclusion ; (2) la langue, la parenté et la culture éclairent les perspectives autochtones concernant le handicap ; (3) le don du handicap est célébré par le biais de récits ; et (4) la colonisation a eu un impact négatif sur le handicap des peuples autochtones. De plus, cette étude démontre que des recherches supplémentaires sont nécessaires sur la politique contemporaine et historique en matière de handicap dans la Loi sur les Indiens et sur les handicaps dans le contexte des pensionnats indiens. Cette recherche examine l’imposition des identités de handicap occidentales et construites de manière coloniale tout en démontrant que les connaissances, les traditions et les pratiques autochtones sont essentielles à la décolonisation des conceptions du handicap au Canada et dans le monde.

Keywords: Indigenous disability; decolonization; Indigenous knowledges; community-based research


Mots-clés: Handicap autochtone; décolonisation; savoirs autochtones; recherche communautaire



Tx̱eemsim—also known as the Trickster, Raven, or Supernatural Being of the Nisg̱a’a Peoples—was brought to the Nisg̱a’a by K’am Ligii Hahlhaahl (Chief of Heavens) and is revered as a hero (Nishga Tribal Council, 1993). His actions, thoughts, and behaviors teach the Nisg̱a’a about their relationship with the land, with each other, and the world. As described by W̓ahlin Sim’oogit Ax̱dii Wil-Luug̱ooda, (Bert McKay), “the deeds and misdeeds of Tx̱eemsim show that every creature in the universe and every person in society has a rightful and meaningful role to play…” (Nishga Tribal Council, p. 15, 1993). The Tx̱eemsim story shared here by Matriarch and Hereditary leader Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires) offers an important teaching about disability within Nisg̱a’a oral histories:

Tx̱eemsim’s story begins when he was born as the son of a spirit being and an earthly mother . . . Perhaps no hero or savior has ever had such a problematic and difficult beginning as Tx̱eemsim. The boy is an ultimate survivor. He lives by sucking his dead mother’s intestines and by eating pitch from trees. Eventually, Tx̱eemsim is captured. When he is first captured, he shows that he can survive without food. He is fascinated with arrows and does not seem to be interested in boys, and he runs from them. He has survived in isolation as a wild child of the trees. He cannot even touch others because of his sharp claws. He must be wrapped in clothing made from animal hides. Only children and their words will bring this strange and special boy into a state where he can interact with others
. . .
The treatment of Tx̱eemsim becomes an instructive metaphor. What is the proper way to relate to a child with differences in the community? The child must be treated with kindness. The community must speak gently and feed him what he will eat. Children can be and are uniquely different from each other, and when even the most aberrant child is ready for transformation, he will shed his hard exterior and join the community. By extension, any of us can be caught up in these situations, and it is through the kindness, tolerance, and persistence of family and community that even the most complex of us may eventually become whole. Everything has a place in creation. If the boy does well eating pitch, the well-balanced and wise community will assist him so that he may thrive. It is of grave importance that the Chiefs and all the community pay close attention to the needs of the child.
It’s like that with anybody with different abilities. They are special, and they have special gifts. Tx̱eemsim’s stories can serve as guidance as we try to live in community and understand reality. Like Tx̱eemsim, we must struggle with problems and generate strategic and relevant approaches. But beyond that, we have a duty to quest toward the light of day rather than the dark of night [and move] to a conscious desire to undertake the spiritual quest. We believe that we are fundamentally spiritual beings.
— Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires)[1]

I begin this paper with an Indigenous story to ground a representation of decolonizing disability and to honour the words of Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires). Leanne Simpson [Michi Saagiig Nishnaabeg] (2011, p. 33) reminds us, “[s]torytelling is at its core decolonizing, because it is a process of remembering, visioning and creating a just reality . . . where we can create models and mirrors where none existed.”[2] Indigenous reflections of disability represented here offer a unique and decolonizing contribution to the field of Indigenous disability studies, for Canada and the world.

About the Author

My name is Rheanna Robinson. I am a member of the Manitoba Métis Federation and an associate professor in the Department of First Nations Studies at the University of Northern British Columbia. My children and I are also members of the Laxsgiik (Eagle) Pdeeḵ (Clan) in the Wilp (House) of Gwiix Maaw ̀ since my former husband is Nisg̱a’a and it is customary to be adopted by one of the Nisg̱a’a Tribes if someone marries a Nisg̱a’a person (www.nisgaanation.ca/enrolment-citizenship).[3] As a scholar living with an evolving lens of physical disability due to being diagnosed with Multiple Sclerosis almost 30 years ago, the study of Indigenous perspectives of disability has become a primary focus of my academic pursuits. My familiarity with individuals knowledgeable about Nisg̱a’a Ayuuḵ (laws), customs, and traditions drew me to collaborate with the Nisg̱a’a Nation for this research.

Disability and Indigenous Peoples: An Introduction

For Indigenous Peoples in what is now called Canada, the prevalence of disability is higher than non-Indigenous Canadians (British Columbia Aboriginal Network Disability Society, n.d).[4] Following an Aboriginal Peoples Survey completed in 2017, Hahmann et al. describe that “roughly one in three First Nations people living off reserve and Métis had one or more disabilities, while among Inuit and non-Indigenous people the proportion was roughly one in five” (n.p., 2019). This overall disparity between Indigenous and non-Indigenous rates of disability needs to be recognized. As Lynn Gehl [Algonquin Anishinaabe-kwe] explains, “Indigenous people have a higher rate of disability, and that’s a manifestation of colonization and genocide . . . It’s not because our bodies are inferior. Colonization and genocide have mapped disease and disability on our land and on and in our bodies and minds” (Live Work Well Research Centre, n.d.). Furthermore, while Indigenous Peoples are overrepresented among those living with a disability, they face additional challenges due to intersecting identities. Indigenous Peoples frequently experience racial discrimination from healthcare providers (Monchalin [Métis Nation of Ontario] et al., 2020), and those living with disability face limited access to specialists, assistive technologies, support services, and pervasive underfunding of on-reserve programs (Vives & Sinha, 2019). As such, understanding the relatedness between colonization and disability amongst Indigenous Peoples is important for the development of appropriate disability-related policies as well as supports and services.

As described by Steinstra (2020), “disability refers to the experiences of meeting barriers or facing exclusion as a result of living with certain bodies or bodily differences” (p. 6) and this may include physical, sensory, psychiatric, cognitive, neurological, or intellectual variances. In Canada, the most recognized models of disability that drive disability-related policy, programs, and supports include the medical and social models. The medical model views disability as a personal failing that prevents individuals from fully participating in society (Haegele & Hodge, 2016). In this model, the focus is on treating or fixing the impairment, often implying a need for the individual to become "normal" (Haegele & Hodge, 2016). In contrast, the social model argues that society disables people, not their impairments (Haegele & Hodge, 2016). It is the prejudice, negative attitudes, and systemic exclusion, both physical and social, that prevent individuals from reaching their full potential (Haegele & Hodge, 2016). This model proposes that the responsibility for creating solutions rests with society, not the disabled individual (Haegele & Hodge, 2016). However, both models have limitations and are founded on a Western-based system of disability that may not be appropriate for Indigenous Peoples. For instance, Hickey [Māori] & Wilson [Ngāti Tahinga (Tainui)] (2017, p. 82) explain:

The medical model and the social model are the predominant northern hemisphere approaches to working with disabled persons. These models view disability in an individualised manner that is not relevant for many Indigenous disabled persons whose worldview is holistic, relational and collective in nature.

Models of disability rooted in colonialism have a significant omission of Indigenous voice, experience, and values.

Within a worldview that emphasizes inclusion and is grounded in relationship and community, an Indigenous disability paradigm respects the unique gifts one may embody through lived experiences (Hickey [Māori] & Wilson [Ngāti Tahinga (Tainui)], 2017). Disability research that amplifies Indigenous knowledge related to perspectives and experiences with disability offers an opportunity to consider gaps in diverse understandings of disability while honouring Indigenous traditions. It is important to reflect on how the colonial construct of disability is incongruent with scholarly descriptions of traditional Indigenous perspectives of difference.

Indigenous Perspectives of Disability Disrupted: Colonialism, Ableism, and Settler Ableist Logic

Indigenous Disability Studies is emerging as an important area of scholarship that has historically been underrepresented (Ward [Métis and Non-Status First Nation], 2024). As such, research related to traditional Indigenous perspectives of disability remains limited. Most Indigenous Peoples do not have a word in their traditional languages that translates to “disability” (Lovern, 2017) or a word that implies that someone has a deficit due to bodily difference. It is thus important to acknowledge Indigenous counter-narratives of disability and the impacts of colonialism, ableism, and settler ableist logic.

Traditional Indigenous knowledge systems inherently enact principles of equity through concepts of “natural democracy” (Lovern, 2017) and uphold the belief that everyone has something to offer family, community, and the world (Yellow Old Woman-Healy [Blackfoot / Oji-Cree] & Running Rabbit, 2021). Indigenous Peoples customarily regard diverse abilities as an important part of creation (Heath, 2017; Hirji-Khalfan, 2009; Velarde, 2018) and in response to the absence of Indigenous disability knowledge systems, Indigenous and non-Indigenous researchers from around the globe are offering important insights regarding disability from diverse cultural perspectives.

For example, Indigenous Australian writers like Dew et al. (2019), Gilroy [Yuin] et al. [Sámi, Métis and Non-Status Indigenous scholars] (2021), Hollinsworth (2013), and King et al. (2014) critique the Western view of disability to demonstrate the coloniality of disability identities and how Indigenous disability cultural representations have been ignored. This omission contributes to the oppression and disablement of Indigenous Peoples. Scholars such as Bevan-Brown [Māori] (2013) and Hickey [Māori] & Wilson [Ngāti Tahinga (Tainui)] (2017) are profiling how the Māori’s community and relationally based perspectives of disability in New Zealand are contrary to Western constructs of disability that depict disability existing as individualistic in nature. Other international scholars like Meekosha (2011), Velarde (2018) and Shakespeare (2013, 2014) are challenging socially constructed impositions of disability to expose the harmful impacts disability identities have had on individuals, families, and communities. In Canada, Durst (2006), Durst and Coburn (2015), Ineese-Nash [Anishinaabe (Oji-Cree)] (2020), and Norris (2014) invite readers to consider the unique and interwoven impacts of marginalization when being Indigenous and disabled in Canada. Finally, in the United States, Burch (2021), Lovern (2017), and Weaver & Yuen, (2017) highlight Indigenous perspectives of disability in their research while Larkin-Gilmore et al. (2021) use story, reflection, and remembrance to share varying representations of disability to show how tenets of kinship, place, and knowledge-making come together to demonstrate how the lands, lives, and identities of Indigenous Peoples have become disabled through colonial and ableist forces.

Indeed, as systemically violent and powerful, colonialism and ableism have directly impacted the representations of traditional and contemporary understandings of disability for Indigenous Peoples. Colonialism, as defined by Cote-Meek (2020, p. 18) “concerns the land, it requires a specific structure of ideology to proceed, it is violent, and it is ongoing.” Ableism, which is most well known as discrimination towards peoples living with disability, has also been used to rationalize race and gender-based discrimination and hierarchies of power between social groups and towards peoples not living with disability (Wolbring, 2008). Here, “[a]bleism and settler colonialism buttress one another” (Anesi [Sāmoan] 2021, p. 3) to reproduce a dominant ideology of white supremacy (Hutcheon & Lashewicz, 2020) that continues to impact traditional perspectives of disability and the inclusion of peoples with diverse abilities in Indigenous communities.

Historical representation that intertwines colonial and ableist motives towards Indigenous Peoples are important to surface. For instance, Burch (2021) articulates the impacts of the infamous (and only) insane asylum for Indigenous Peoples in the United States: the Canton Asylum. Established by the US government in the state of South Dakota in 1903, the Canton Asylum housed more than 350 patients where at least 121 people perished in deplorable living conditions before the asylum closed its doors in 1934 (Burch 2021, p. 3). Not only does Burch’s book offer an example of a culture-based, health-related space of forced institutionalization, but her research reveals how a pathology of “ableism” and “normalcy” interrupted self-determined identities of inclusion and belonging within Indigenous communities for generations.

In a Disability History Association podcast with Kelsey Henry and Caroline Lieffers (2021), Burch offers the following when considering ableist ideologies:

I think about the ways that ableism is not merely discriminating against disabled people, which is one of the ways it has been articulated and was helpful in drawing our attention to disability discrimination. But . . . I think, in actual lived form, it’s not only about this thing we call disability but the ways that societies and dominant authorities from those societies have biologized social difference and justified the continuation of inequity and violence in the name of progress, competency, excellence, and independence.

Here, Burch builds on work by Cowing (2020, pp. 9–10), to reflect on the conceptualization of “settler ableism,” and how, “by imposing settler forms of medicine and knowledge practices, settler ableism actively sought and reflected broader colonial principles and aspirations.” Such considerations reveal how disability is a colonial and socially constructed identity that has been mobilized through settler ableist policies and practices with far-reaching impacts for Indigenous Peoples and their communities.

In Canada, there are historical and contemporary representations of settler ableism and disability discrimination towards Indigenous Peoples. For example, section 10 of the 1927 version of the Indian Act (emphasis added) states:

Every Indian child between the ages of seven and fifteen years who is physically able shall attend such day, industrial or boarding school as may be designated by the Superintendent General for the full periods during which such school is open each year. (p. 6)

Given that “physically able” is not clearly defined, one can assume that this meant Indigenous children living with a physical disability did not attend an IRS. This incites a need to know more about what happened to Indigenous children living with disability that did not attend IRS during an era of intense control over the lives of Indigenous Peoples (Milloy, 2017). The Indian Act continues to include settler ableist language that denotes control by the state (i.e., the Minister of Crown-Indigenous relations) over those with a disability. Section 51(1) of the Indian Act (1985) states: “Subject to this section, all jurisdiction and authority in relation to the property of mentally incompetent Indians is vested exclusively in the Minister” (n.p.). For the purposes of the Indian Act (1985, n.p.), “mental incompetence” means:

an Indian who, pursuant to the laws of the province in which he resides, has been found to be mentally defective or incompetent for the purposes of any laws of that province providing for the administration of estates of mentally defective or incompetent persons

Although the “mental incompetence” language included in the Indian Act is currently being revised by the Government of Canada (n.d.a, n.d.b.) through Bill C-38 to instead include “dependent person,” it is important to acknowledge how the determination of mental incompetence has also been used to control Indigenous Peoples in Canada through the forced sterilization of Indigenous women (Stote, 2012) as a demonstrative representation of settler ableist logic and practice. Colonial and ableist logic continues to have a profound effect on how Indigenous perspectives of disability are understood and it is imperative Indigenous voices, knowledges, and traditions become represented within mainstream disability discourse.

The Nisg̱a’a Peoples

Since time immemorial, the Nisg̱a’a have resided on their traditional territory in northwestern British Columbia. Situated among mountains and waterways that lead to the Pacific Ocean, the Nisg̱a’a are K’alii-Aksim Lisims, the people of the Nass River (Robinson [Nisg̱a’a], 2009). From my lived experience, I have come to learn that the Nisg̱a’a language is Sim’algax and like other Northwest Coast First Nations, the Nisg̱a’a follow a matrilineal kinship system. All Nation members belong to a Pdeeḵ (Clan) and Wilp (House). Nisg̱a’a Pdeeḵ include G̱anada (Raven), Gisḵ’aaskt (Killerwhale), Laxgibuu (Wolf), and Laxsgiik (Eagle) and each Pdeek has Huwilp (Houses) that are led by a Sim’oogit (Hereditary Chief). Members of each Wilp have a distinct responsibility to different areas of Nisg̱a’a lands, Adaawaḵ (oral traditions), and history (including language, songs, and stories).

The Nisg̱a’a believe all human beings have a soul and “[i]f someone's soul was out of place or missing one or more ‘Halayt’ were called. Halayt were people with training to be both doctors and priests…” (Boston et al, p. 153, n.d.). Soul catchers, raven rattles, and bone charms were used as part of traditional healing and health practices (Boston et al., n.d.). Although not all traditions continue to be practiced due to the impacts of colonization, the Nisg̱a’a still follow a traditional model of governance through the Yukw, which is also known as the Feast or Potlatch system (Robinson, 2009). Currently, there are up to 50 Huwilp (Houses) that include 40 Ango’oskw (Family Territories) (Hoffman and Robinson [Robinson Nisg̱a’a], 2010). The four villages of the Nisg̱a’a Nation on Nisg̱a’a lands are Ging̱olx (Kincolith), Lax̱galts’ap (Greenville), Gitwinksihlkw (Canyon City), and Gitlax̱t’amiks (New Aiyansh).

As the first Indigenous group in Canada to negotiate a modern treaty, in 1998, the Nisg̱a’a Nation fought for more than 130 years to reclaim their right of self-government and land ownership (Gosnell, 1998; Calder, 1973). The Nisg̱a’a Final Agreement, which came into effect in 2000, commemorates the Nation’s tireless insistence on the rightful ownership of some of their territory and their right to exercise self-governing practices for Nisg̱a’a and communities. As the practice of Nisg̱a’a traditions, beliefs, customs, and languages has continued alongside an onslaught of colonial disruptions, disability associated knowledge from the Nisg̱a’a lands can contribute much to disability studies.

Indigenous Perspectives Regarding Disability: A Case Study

Influenced by Métissage, an Indigenous theoretical positioning that gives space to honour diverse lived realities and voices (Burke [Métis Nation of British Columbia] & Robinson [Manitoba Métis Federation], 2018; Donald [amiskwaciwiyiniwak (Beaver Hills Cree)], 2011), this study includes storytelling (Archibald [Sto:lo First Nation], 2008) and a representation of Indigenous knowledge systems (Kovach [Nêhiyaw and Saulteaux], 2021) to understand Indigenous perspectives regarding disability that include voices from the lands of the Nisg̱a’a Nation. The theoretical underpinnings of Métissage and storytelling come together to honour the voices of interview participants and celebrate Indigenous knowledges. Through a qualitative case study design (Yin, 2012) the research represented here makes an important contribution to decolonizing disability.

Participant recruitment was initiated following ethics approval at UNBC and support from the Wilp Wilx̱o’oskwhl Nisg̱a’a Institute (WWNI), an Indigenous postsecondary institute in the Nass Valley of northwestern British Columbia that oversees approvals for research conducted on Nisg̱a’a lands. Due to my prior relationship with some study participants, I directly invited them to take part in the study. I invited other study participants after their names were recommended to me once this study was underway. All participants received an Information Letter and Consent Form before interviews were scheduled.

I conducted semi-structured interviews with six participants including Simgigat (Hereditary Chiefs), Sigidim Haanaḵ’ (Matriarchs), and Community Leaders.[5] Five interview participants are Nisg̱a’a, and one is Tsimshian and a member of the Nisg̱a’a Nation by marriage. All participants reside on Nisg̱a’a lands and have lived experience and knowledge about traditional and contemporary Indigenous perspectives and experiences of disability. As Hereditary Chiefs, Matriarchs, and community leaders, participants followed the Ayuuḵ (traditional laws) of the Nisg̱a’a Nation and shared knowledge and stories important to this study.

During the interviews, I asked participants to talk about the following: (1) whether the Nisg̱a’a language includes or does not include words for “disability”; (2) how the Simgigat (Chiefs) or a Sim’oogit (Chief) ensures that people with disabilities hold their ancestral and Nation-related identities and are included in traditional governing processes (i.e., the Feast or Potlatch); (3) how non-Nisg̱a’a perspectives of disability differ from traditional Nisg̱a’a perspectives; and (4) stories about Nation members with disability.

I received written or verbal consent from each participant. Three interviews were completed by telephone, and three were completed using Zoom videoconferencing. Each interview took approximately 30 to 60 minutes. Following the interview, the recording was transcribed and forwarded to the participant for their review and approval and the interviews were slightly edited for clarity. The final version of this article was reviewed by the Nisg̱a’a Lisims Government Language and Culture Directorate to ensure the accuracy in the spelling of Nisg̱a’a words and representation of stories and culture.

Anonymity could not be guaranteed due to the small size of Nisg̱a’a communities, and all participants chose to use their real names. Participants received a note of thanks and a small gift of gratitude for their involvement in the research. Once data had been collected and member checked, I color-coded similar responses to identify key themes. Key quotes and other academic references support the thematic categorizations emerging from data analysis.

Interviews allow participants—as experts—to shape the knowledge produced. The Adaawaḵ (oral traditions) of the Nisg̱a’a remain an integral and important part of their knowledge systems. Indigenous perspectives on disability make an invaluable contribution to disability studies and disability policy. Including the voices of participants involved in this study here ensures that Indigenous perspectives on disability are represented. Their words strengthen the rigor and validity of the work (Leech 2002).

Findings: Indigenous Perspectives on Disability

Four themes emerged from the interviews that were included as part of this case study that emboldens decolonizing disability through the inclusion of diverse stories from the lands of the Nisg̱a’a Nation: (1) Indigenous laws and cultural protocols enact principles of equity and inclusion; (2) language, kinship, and culture inform Nisg̱a’a perspectives regarding disability; (3) through storytelling, disability is celebrated; and (4) colonialism has negatively impacted disability in Indigenous communities. It also became apparent with interviews that further research must be undertaken to learn more about embedded disability policy within the Indian Act and within the context of IRS.

Indigenous Laws Enact Equity and Inclusion

Early in the interview process it became obvious that when considering disability, Indigenous law, culture, and worldviews enact principles of equity and inclusion. Nisg̱a’a Ayuuḵ (law) reflects this notion and the belief that all peoples are of “one heart, one path, one nation” (Robinson [Nisg̱a’a], 2009) and this follows the Nisg̱a’a guiding principle of lip wilaa loom ́ (the Nisg̱a’a way of life).

Several participants remarked that Indigenous traditions and cultures follow the principle of equality among peoples, regardless of different abilities. According to Sim’oogit Duuk’ (William Moore):

We have to refer to the Nisg̱a’a Ayuuḵ and the way we live culturally. We believe that everybody is equal, and [equality] gives our extended family, our Wilp (House), strength and empowerment. To acknowledge or focus only on one aspect of a person [such as disability] would be counter to that. It would create division and is disempowering. We don’t divide people by their perceived disabilities or different abilities. Everyone is looked upon as a member of our society who can contribute . . . There is no classifications or demeaning terms to describe a person . . . When you are born, you are taught the culture and taught to know what your role is in Nisg̱a’a society. [Peoples with disability] are not ostracized or frowned upon for being different.

Likewise, Sim’oogit Ni’isýuus (Willard Martin) explained:

Like anyone in our society, people with disabilities are not isolated. They’re not treated any differently. I think, for the most part, many people look at them as having different abilities . . . Simgigat (Hereditary Chiefs) honour and include those with difference . . . They don’t differentiate because of noticeable disabilities. They are received as equal and are seated accordingly in the Feast Hall.

The rich and in-depth understanding of the Ayuuḵ offered by Sim’oogit Duuk’ (William Moore) and Sim’oogit Ni’isýuus (Willard Martin) acknowledges the importance and interconnectedness of Nisg̱a’a Ayuuḵ (laws) within their language, kinship, and culture and everyone is included in community. Ayuuḵ informs how Nisg̱a’a perceive disability and how they interact with and toward those with a disability within their family, community, Wilp, and Nation.

Language, Kinship, and Culture Continue to Inform Nisg̱a’a Knowledge Regarding Disability Language

Language can shape one’s perception of what a word means (Yellow Old Woman-Healy [Blackfoot / Oji-Cree] & Running Rabbit, 2021) and this signifies the importance and need to better understand how Indigenous languages, and the Nisg̱a’a language specifically, describes disability.

Participants shared Nisg̱a’a words that are deeply embedded within their culture and not easily translated into English. For example, “disability,” as a singular term, is not easily translated because the Nisg̱a’a language has many different bodily representations. Sigidim-nak’ Diiks (Elsie Campbell) explained:

There are some words you can say like sipsiipkwhl hliphlaniy̓. This means “my body aches” or “my joints are sore.” Or you can say siipkwhl t’imgesiy̓, which means “I’ve got a headache” . . . Or we would say ahl ax̱yeetkw, which means “to have trouble walking.” Or txaa-siipkwhl hliphlaniý means “my whole body is aching, and I can’t really walk” … There’s so much that can’t be said since there are so many words that are included in “disability” because there is not one word for “disability.”

Sim’oogit Ni’isýuus (Willard Martin) also described:

We have a word in Nisg̱a’a language [to consider] for people with disability. The word haxhaaxgwit prompts us [in our language and culture] to refer to the social and safety network that exists within our culture [and refers to peoples that the community support because they may be experiencing distress]. We have a real difficult time trying to translate our language into the English language. Sometimes we can’t find the words to adequately describe the translation and adequately show the meaning within our language. Very important traditional terms that further formulate the reaction to disabilities, and they are kwhlix̱oosa’anskw, meaning “respect” and ḵ’e’em-goot, which means “compassion.”

The Nisg̱a’a have always had their own understandings and words for “disability.” The term “disability” is, indeed, a colonial imposition which imposes an embodied experience that is contrary to the culture and Ayuuḵ (laws) of the Nisg̱a’a.

Kinship

Kinship is integral to Nisg̱a’a culture and ways of being. Participants described kinship obligations and how they were fulfilled through cultural practices where individuals with diverse abilities are always included in community. Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires) explained:

As a Sim’oogit (Chief), you need stamina because you’re leading . . . It’s like a big orchestra in front of you when you’re a leader of a Feast . . . Now I’ve seen a Sim’oogit (Chief) who was stricken with cancer and had to have a special chair. He led [his Clan] as far as he could, and then one of the Feasts he said, “I am now turning this part of my responsibility to my nephew. He will now look after this responsibility for the rest of his life.” It was quite an emotional time when he said that. People with disabilities are common in the Feast, and not just physical disabilities but mental disabilities as well . . . The only time a person would be excluded ever would be if they may harm themselves or harm others, and they will be given every single chance to do absolutely anything that they can . . . In the Feast Hall, people have a special seating place, and it doesn’t matter [if you have a disability]. Simgigat (Chiefs), Sigidim Haanaḵ’ (Matriarchs), young woman, young men, children, women with children. Everybody is treated the same.

She continued, “I don’t know how other communities are, but in this community, we are all basically one family.” Kinship and familial relations as defined by Nisg̱a’a traditions, customs, and Ayuuḵ (laws) ensure community connectedness and care for those with difference.

Culture

The role of Nisg̱a’a culture when it comes to ensuring community responsibility for those with disability is profound. Sim’oogit Ni’isýuus (Willard Martin) acknowledged that one’s caregiving roles were traditionally culturally associated: “Mental [disability-related needs] are the maternal responsibility, and for those with physical needs, it was usually the paternal relative’s responsibility.” Dorcas Annie Stewart described how, in the Feast Hall,

[Everyone, Nisg̱a’a and non-Nisg̱a’a] is acknowledged at the door… There is the Chief’s head table and the Matriarch’s head table and the ones that are not in that role. They would seat about four or five people from where the Simgigat (Chiefs) and Sigidim Haanaḵ’ (Matriarchs) sit. If those rows are filled up to capacity, then there’s another row of tables where they would seat them. [Everyone] gets acknowledged . . . [If people are from another community], we take them into our Wilp (House). If she comes to the door and gets seated, they will say the same thing: ga’ahl dim wil t’aat… “Find a seat where she can sit.”

Dorcas Annie Stewart explained further:

When I was growing up, a lot of our own people that had disabilities, but they were always recognized. Today, what we do if an Elder cannot make it to a Feast Hall is get a care package from the Feast together and bring it to that Elder. We tell him or her whose Feast it is and what Wilp (House) it came from and make them feel they weren’t excluded. Usually, even if it’s like a bowl of our Nisg̱a’a soup and a bun, we will bring that to him or her and their care package that was given out in the Hall. It didn’t matter who they are, if they were disabled or nondisabled, then we do that. [At the beginning of the Feast, there are] men at the door hollering out to seat people, and then we have the younger members of the Clan help seat the people. If there’s an Elder at the door that needs help to sit down, then the young guys and the young ladies would come. They’re standing at the door waiting to see who needs help. If he is a Sim’oogit (Chief), then they would put him in the front [so they can be seated immediately and are not waiting], and if it’s a Sigidim-nak’ (Matriarch), they do the same thing. The Chief has their own place of seating, and the Sigidim-nak’(Matriarch) has the same thing. If they need to pull out a chair, like if she is in a wheelchair or he’s in a wheelchair, they’ll pull a chair out from the table and make her sit at her place, where she [is] supposed to sit with the Sigidim Haanaḵ’ (Matriarchs) or with the Simgigat (Chiefs) and put that person there.

Sim’oogit Ni’isýuus (Willard Martin) recounted:

I think, depending on what the disability is, there are special needs. Like the knowledge of how to care for them is a serious consideration. We had an individual here who from infancy was in an institution and wanted to come home, so the whole community had to accommodate him. That’s a good example of how receiving the Nation is . . . and provide the care that he needed . . . His natural caregivers, his paternal relatives, were always prompted to doing and fulfilling their role, although there were also paid attendants [supporting his care] . . . I was part of the team that negotiated his return and how it became apparent that some of [his caregivers] and the government representatives didn’t think we had the capacity to care for him. We had to prove it to them and spent a lot of time convincing them that [we could] accommodate the special care that he needed. Somebody was with him 24 hours a day . . . People are aware of their responsibility [and traditionally] mental disability [would be a] maternal responsibility. Physical needs [were] usually the paternal relative’s responsibility.

Cultural and kinship responsibilities prevail for the Nisg̱a’a. This includes ensuring community members can uphold their Nation-specific roles so kinship and cultural responsibilities can be realized. All Nations members are an equal and integral part of ensuring traditional cultural systems persevere.

Storytelling Celebrates Disability

Archibald ([Sto:lo] 2008, p. 85) describes how stories can play a significant role “in teaching, learning, and healing . . . The power of a story is shown through the stories about a story.” When it comes to understanding more about disability in Indigenous communities, stories make a critical contribution to knowledge exchange and transmission. The stories shared here represent important insights about inclusion and belonging for Indigenous Peoples. For example, Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires) explained:

Precontact, we didn’t have failures. We believe that learning begins in the womb . . . right from when a woman got pregnant and talking to the baby in the womb to find out what its gifts were. As soon as a baby was born, sometimes the Elders could tell – [the child] would start to be trained for something . . . If all you had to do is gather wood, that was just as important as a hunter. So, a child was trained right from when they were little, [and] it didn’t matter whether [someone was disabled] . . . It was treated as a special gift from the Creator and usually given special jobs to go with that . . . So, it might be one of the people that is our astrologers to watch the heavens to predict when things were going to happen. Everybody has an important role in the community, and that continues to this day.

Sigidim-nak’ K’yaks Sgiihl Anluuhl P’sday (Dr. Deanna Nyce) furthers this when she describes:

There is a saying, that everybody is born with a gift and that we acknowledge and accept that gift, whatever that gift is, and if it’s a gift of disability, that is a gift as well . . . Children and adults in my world that I’ve seen . . . weren’t treated any differently, except that we did assist, where they needed assistance. [Those with disability] were part of the family . . . not just a nuclear family, but the whole family. And when we had Feasts in our House and my House from my birth House [everyone was a part of it].

Sim’oogit Ni’isýuus (Willard Martin) shared how stories describe those with disability as an integral part of community:

I had a first cousin who was deaf, and as an example of the Nisg̱a’a society, the Nation allowed him to be who he was and encouraged his abilities. He grew up to be a fisherman and earn a living working for himself. He was independent. He didn’t learn much in school, but he became a good carpenter, and he was able to work around motors. He had his own sign language . . . and he could read lips, especially in our language. He wasn’t treated any differently; he was just like any one of us . . . When I was growing up, there were people that would use a cane, but nobody only looked at them in that manner. They weren’t focused on what their perceived disability was. They were a contributing member of the community. To be disrespectful to anyone, your Wilp (House) was showing disrespect to the entire community. And that is one of our Ayuuḵ, to be respectful. To be respectful to all people.

Elgar (1995, p. 75) reflects on a story offered by Iris Heavyrunner, who explains how an Elder from her Nation wore leather cuffs to symbolize his deafness since, “within Aboriginal culture, deaf people were greatly respected because it was believed that their deafness gave them a triple sensitivity to their other senses.” Through the story, disability is characterized in a way that honors the difference and unique contributions individuals bring to the world.

Colonialism Has Negatively Impacted Disability

When asked how non-Nisg̱a’a perspectives of disability differ from Nisg̱a’a perspectives, participants revealed how perspectives and attitudes have changed over time. Sim’oogit Duuk’ (William Moore) explained:

I think non-Nisg̱a’a perspectives tend to pigeonhole everybody. We don’t see that in our culture . . . to label someone as disabled is forbidden. I don’t really like the term “disabled.” A disabled person in our culture means someone with “no ability” [and we don’t believe that]. Individuals are recognized by their contribution to their Wilp (House), their extended family, and the Nation as a whole.

Sigidim-nak’ K’yaks Sgiihl Anluuhl P’sday (Dr. Deanna Nyce) commented further on the distinction among cultures:

I think that we don’t take the time to understand as much as we can . . . and in our haste, we forget, especially if we don’t have somebody in our own world with a disability or something that they’re challenged with. Accessibility for all should be mandatory . . . We are blessed to work with people with disabilities . . . Remember our perspective is that this is a blessing . . . Doesn’t matter what the complication may be.

Sigidim-nak’ Diiks (Elsie Campbell) commented on people ridiculing those with disability:

I remember my mom saying that my dad said, “Don’t ever say anything bad against what they’re saying to you. It will go back to them eventually” . . . There is so much ridicule out there . . . I think back in the day, there wasn’t any bullying! When schools started [for Nisg̱a’a children], there was bullying, but I don’t think that happened in my parents’ and grandparents’ days. When one teacher came back from Indian Residential School, I was even strapped, and my dad protected me. Back in the day, the tribal customs were very real, and very open. Youth was more involved. Now they [pay attention to their devices]. If the [newcomers] hadn’t changed things, things would be different. There would be no illness. When I think of the illness and the pills . . . it really bothers me.

Sim’oogit Ni’isýuus (Willard Martin) noted:

One of the effects of contact with non-Nisg̱a’a that is very noticeable: there’s an increase of [fetal alcohol spectrum disorders] due to accessibility to alcohol and drugs, and there’s a real need for better care for those with mental disabilities. That’s an important need that has to be met.

He continued:

I think in non-Nisg̱a’a society [disabled individuals] are isolated or set aside, and there’s a tendency for that because they’re probably noticeable disabilities whether it’s [a physical] or mental disability . . . In our society, it doesn’t occur so readily. They’re accepted as equally as anyone else.

Colonialism has clearly had an impact on perceptions of disability and the kinds of disability communities are trying to support. Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires) commented:

We’re not as caring sometimes . . . We’re becoming more nuclear, and it’s sad because it was a community responsibility if somebody was having any difficulty. We still are awesome when it comes to deaths and marriages and those big things. But the littler things, I don’t know.

Indeed, these reflections show that colonization has interrupted traditional perspectives and presentations of disability on Nisg̱a’a lands.

Disability Policy within the Indian Act and Indian Residential Schools

The contribution of one participant reveals the importance of reflecting on how the Indian Act treated people with disabilities. During the latter part of my interview with Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires), she stated:

My mother always walked with a limp. She was always in pain, and her mother was like that, and I had a couple of aunts that were like that. Although I don’t know why two generations of women in my family that are from Laxgibuu (Wolf) Clan all had issues with their hips, I do know those women did not have to go to IRS and could stay in community to learn our language and culture. Talking about it makes me want to cry when I think of the pain that my mother and my grandmother went through because of their hips. But because my mother was disabled, she didn’t go to IRS . . . More research needs to be done about the children with disability that stayed home from IRS.

Even amid communities enduring the devastating consequences of Indian Residential Schools (IRS) and knowing that parents hid children as an act of resistance against the IRS system (Grant, 1996; Hanrahan, 2008), disability discrimination crept into the lives of Indigenous Peoples and their communities. It is important to question how IRS-related disability discrimination may have shaped the way communities understood children with disabilities and how this impacted traditional Indigenous perspectives of disability. Further research regarding the experiences of disabled Indigenous children during the IRS era is needed. Not only will this make an important contribution to other IRS studies from researchers like Flisfeder (2010), Grant (1996), Haig-Brown (1988), Miller (1996). Milloy (2017), and Truth and Reconciliation Commission of Canada (2015), but it will amplify the inherent settler ableist tendencies of Canadian colonial powers.

Discussion

This article offers compelling research regarding Indigenous perspectives of disability from Indigenous leaders who reside the lands of the Nisg̱a’a Nation and are familiar with the language, Ayuuḵ (laws), and traditions of this Northwest Coast First Nation. Using semi-structured interviews with research participants, themes related to equity and inclusion; language, kinship, and culture; the relevancy of storytelling; and that colonization, ableism, and impacts of settler ableism, emerged from this work. This study also reveals that more research is needed regarding disability policy in the Indian Act and IRS.

It is important to acknowledge that while this research upholds the Adaawaḵ (oral traditions) and Ayuuḵ (laws) of the Nisg̱a’a, the research ascertained here has strong synergies with preexisting literature. For example, like Nisg̱a’a beliefs of interconnectedness, equity, and belonging for all peoples, Yellow Old Woman-Healy & Running Rabbit (2021, p. 1) explain how “[a] circle is a powerful symbol… [and] is a representation of wholeness and interconnectedness, with individuals viewed as equals, whether able bodied or not”. Likewise, Bevan-Brown ([Māori] 2013, p. 573) describes how, “there is strong evidence to support the total inclusion of intellectually disabled people in [Whan ̅au] traditional society. Whan ̅au were socially and morally obliged to look after their members”. Indeed, the important representations of equity and inclusion offered here demonstrate a powerful thread within Indigenous knowledges and values.

Regarding language, kinship, and culture, participants from Nisg̱a’a lands insisted that the word “disability” does not easily translate to the Nisg̱a’a language, especially when considering the deficit framework associated with disability from a Western point of view and the impacts this may have on traditional relationships and community responsibilities. When Sim’oogit Ni’isýuus (Willard Martin) shares that some Nisg̱a’a words associated with reaction to disability for Nisg̱a’a include kwhlix̱oosa’anskw, meaning “respect” and ḵ’e’em-goot, meaning “compassion,” we are reminded of the spirit of inclusion for all community members regardless of abilities. Gilroy [Yuin] et al. [Sámi, Métis and Non-Status Indigenous scholars] (2021, p. 2080) explain that “[a]lthough there is no word comparable with the English definition of disability in any traditional Indigenous community on a global scale, these communities are familiar with ability differences” and such differences are an integral part of kinship systems that establish critical relations and cultural practices for Indigenous Peoples (Larkin-Gilmore, et al., 2021). Disability, as a colonial construct (Ineese-Nash [Anishinaabe (Oji-Cree)], 2020), has had detrimental consequences to traditional representations of disability for Indigenous Peoples and disrupted traditional representation of “disability” on Nisg̱a’a lands.

Storytelling plays a critical role in Nisg̱a’a culture, and the stories shared as part of this research encapsulate Nisg̱a’a views of disability as gifts and an important part of creation. As Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires) reminds us with the story of the shapeshifter Tx̱eemsim, even powerful divine beings like Tx̱eemsim have a disability. Through story, this figure of Nisg̱a’a culture communicates powerful and important lessons for everyone to live by. Ineese-Nash [Anishinaabe (Oji-Cree)] (2020) offers a similar representation through the sharing of an Anishinaabe story (p. 38) as a representation of the importance if intergenerational knowledge transmission and translation. Stories shared by Nisg̱a’a, and other Indigenous Peoples are a strong representation of colonial resistance (Simpson, 2011) and make a powerful contribution to decolonizing disability discourse.

Colonization, ableism, and settler ableist prejudices impacted Nisg̱a’a perspectives of disability. Participants discussed the inference that settler cultures, medicines, and beliefs systems have had on the perceptions of disability for Nisg̱a’a since colonial, ableist and settler ableist beliefs assume through the pathologization of Indigenous Peoples intellectual, moral, and physical deficiencies need to be overcome (Burch 2021; Cowing, 2021). A bold and blatant representation of this is evident in the way the Indian Act seeded hierarches and divisions according to ability and disability in the IRS era and continues to do so in relation to State control over the property of those living with “mental incompetence.” It is a poignant part of this study to learn of the representation of disability discrimination within profound legislative realities such as the Indian Act.

This study offers a unique representation of First Nations voices from Northwestern BC while reinforcing a need for a paradigm shift to represent Indigenous worldviews and knowledges. Lynn Gehl (Live Work Well Research Centre, n.d.) explains:

In the Western world, we’re individuals; in the Indigenous world, we’re individuals within relationships. While some people rely on false dichotomous reasoning saying, “It’s individuals versus relationships,” this is not quite right. It’s ‘individuals’ versus ‘individuals within relationships.’ In the Indigenous worldview, we nurture the individual and their internal gifts, but we also nurture who they are within relationships . . . In western culture we are treated only as individuals.

To fulfill the objectives of reconciliation and validate Indigenous worldviews and histories, disability policies and programs need to acknowledge and position Indigenous voices as integral to knowledge transmission and exchange. As Sigidim-nak’ K’yaks Sgiihl Anluuhl P’sday (Dr. Deanna Nyce) states:

What we need to do as a society is accept that disability is part of our reality . . . We should be creating opportunities for more stories to come forward and having Indigenous folks that have disability tell their stories so that others can understand.

Further research related to Indigenous disability is important for Disability Studies and broader understanding of Indigenous health and wellness in our contemporary world.

Conclusion

This study emerged as part of my journey to understand how living with the identities of being Indigenous and disabled manifest in my life in ways that are colonial and socially constructed.

How Indigenous Peoples traditionally observe and treat disability is an under-researched area of scholarship that has the potential to redefine and reframe how disability is perceived. Teachings from Tx̱eemsim and stories from diverse Nations across Canada must be respected and included as part of this process. Acknowledging, understanding, and enacting the Indigenous perspectives of disability is the first step toward decolonization. Guided by the wisdom of Elders and other Indigenous leaders, I am committed to mobilizing spaces where Indigenous perspectives on disability are heard. More studies of Indigenous worldviews on disability are needed to achieve a more inclusive and just world.

Acknowledgements

Sincere gratitude to interview participants: Sigidim-nak’ Diiks (Elsie Campbell), Sim’oogit Ni’isýuus (Willard Martin), Sim’oogit Duuk’ (William Moore), Sigidim-nak’ K’yaks Sgiihl Anluuhl P’sday (Dr. Deanna Nyce), Sigidim-nak’ Hagwil ́ook’am Saxwhl Giis (Irene Squires), and Dorcas Annie Stewart.

In addition, I would like to acknowledge the following student Research Assistants for their engagement with this paper: Spring Coltraine (Métis Nation of British Columbia); Briana Greer (Métis Nation of British Columbia); and Ashley Wilkinson, a PhD Candidate in the School of Health Sciences at UNBC.

Endnotes

  1. The hereditary Indigenous titles and/or names of each participant are included throughout the article. This is followed by the English names of each participant in parentheses.
  2. An effort was made to acknowledge the Indigeneity of authors included in this paper. Therefore, if Indigenous identification was available, it is noted in brackets immediately following the name of the author within or outside paratheses.
  3. The term “Pdeek” may refer to either “Tribe” or “Clan” and the terms Tribe or Clan are used interchangeably by Nisg̱a’a Peoples.
  4. Terminology used for Indigenous peoples in Canada has changed over time. “Indigenous” is the common term utilized in academic, legal, and political contexts. However, when including reference to other sources I may use “Aboriginal,” “First Nations,” and “Indian”; when I do so, I am using in relation to socio-historical contexts. In addition, the Nisg̱a’a Nation and/or Tsimshian Nation (as distinct First Nations) are acknowledged throughout.
  5. Sim’oogit (Chief) is the singular term for Simgigat (Hereditary Chiefs). Sigidim-nak’ (Matriarch) is the singular term for Sigidim Haanaḵ’ (Matriarchs).

References