The Indigenous population in Canada is a culturally and geographically diverse group that includes First Nations, Métis and Inuit people. According to Statistics Canada’s 2017 Aboriginal Peoples Survey, Indigenous people experience a higher rate of disability than non-Indigenous Canadians1. For Indigenous people who live with a disability, the challenges don’t end at navigating their daily lives as they must also manage systemic discrimination and barriers when accessing healthcare and support services. Addressing inequities in disability support, management, treatment, and care is critical to ensure all Canadians with MS can live a full and happy life.
November is Indigenous Disability Awareness Month (IDAM). Created in 2015 by the BC Aboriginal Network Disability Society , IDAM celebrates the achievements and contributions Indigenous people living with disabilities make despite any barriers and challenges they may experience.
Different Perceptions of Disability
“It’s essential to acknowledge that Indigenous people have traditionally held different perspectives about persons living with disability,” says Dr. Rheanna Robinson, faculty member in the Department of First Nations Studies at the University of Northern BC.
“In our contemporary world, ‘disability’ is a constructed identity that lends to persons being able to access different medical or health services and be protected under the Canadian Charter of Human Rights and Freedoms. It is a socially constructed and colonial term ‘disability’ is considered from a very individualized and isolated experience, that can negate the relational tenets that are at the foundation of Indigenous communities. Disability does not just impact the individual, it impacts parents, it impacts children, it impacts siblings, and then ultimately, the entire community.”
Dr. Robinson, who is of Métis ancestry and has children who are also of Nisga’a ancestry, reflects on thoughts from her personal experiences with Elders about the term ‘disability’, “I have learned that there are traditional [Indigenous] languages that do not have a word for ‘disability’ or ‘disabled’. Now, this is not to say that Indigenous communities didn’t or don’t have terms for specific limitations. For example, in the Nisga’a language, while there is no word for disability, there is a word for ‘walking abnormally’ which is gana’atkw. But ‘disability’ did not define someone’s identity. Within traditional Indigenous views of physical, sensory, psychiatric, cognitive, neurological, or intellectual impairments, differentiation from able-bodied individuals did not exist. The attributes and gifts one brought to the world did not include a disability identity and one’s relational role in the community always prevailed.”
Despite the recognition of IDAM, “Traditional Indigenous perspectives on disability are an understudied area of scholarship,” Dr. Robinson says.
“It is important to consider how different cultures perceive ‘disability’, particularly when considering discrimination and inaccessibility in our predominantly ableist world. Indigenous Disability Awareness Month is an important time to reflect on perspectives of difference and embrace acceptance and belonging.”
Dr. Robinson is intimately engaged in this conversation. She is an Indigenous mother of two and scholar specializing in Indigenous education who has lived with multiple sclerosis (MS) for over 26 years.
“Trying to navigate the perception of people with disabilities versus the reality of people with disabilities is much, much different.”
While she considers herself a disability advocate now, she was not open about her diagnosis until a few years ago.
“Overcoming assumptions, stigmas, discrimination, and stereotypes of being Indigenous and disabled is profound. Fear and isolation can be as crippling as the condition itself. In public school, university, and some of my workplaces, I encountered judgements of disability as ‘bad’. I avoided calling in sick to work and wouldn’t dare miss a parent-teacher meeting, or an important social or professional gathering. Risking the perception of being incapable, incompetent, a nuisance, or lazy was not an option.”
Rheanna’s MS Journey
“It had always been a dream of mine to travel Europe. When I was 19 years old, I took a year off of university and went home to earn some money to fund my European adventure,” Rheanna remembers.
“But in the fall of 1996, I started experiencing some profound and unusual sensory symptoms, including numbness and tingling in my legs and my back, which brought me to the doctor. We didn’t have a local neurologist available in my remote community in northern British Columbia so in January 1997, I travelled a few hours to Terrace, BC, to see a neurologist. I was flown to Vancouver almost immediately for my first MRI and I received my diagnosis of relapsing-remitting MS within a week. Sadly, my European adventure that was set to depart in February 1997 was cancelled. Despite this, I decided to return to university the next fall even as I struggled with increasing sensory impacts and temporary loss of vision in both eyes. I was young and knew I still had so much to do, but contemplating my future, my life, and what was going to happen to me became all-consuming.”
“I was young and I knew I still had so much to do, but contemplating my future, my life, and what was going to happen to me became all-consuming.– Dr. Rheanna Robinson
Rheanna grew up in the small town of Smithers in Northwestern BC.
“MS is relatively common (in Smithers) so it wasn’t an unfamiliar condition to me. But of course, what I was familiar with was the severity of MS. My reaction when I was first diagnosed was a lot of fear and then significant denial. I didn’t tell anyone outside of my immediate family and close friends about my condition. It hasn’t been until recently that I’ve realized what a heavy burden it was for me to carry for over 20 years. I lived in a long -much too long – period of denial.”
It has only been recently that Rheanna’s MS has become visible, and she has transitioned to secondary progressive MS. She began to use a cane when she experienced mobility issues about five years ago and is reliant on using a walker in her day-to-day life now.
“In the last five years or so, my MS has impacted the whole right side of my body, everything in my face and all the way down to my toes, with my right leg being extreme difficult to move. I am right handed, so I can’t print anymore with a pen and typing is hard. My dexterity is utterly challenged. Oh, and of course the fatigue. The ambulation limitations are the most challenging for me but the fatigue is equally as physically limiting.”
Although she has recently returned to work, she took a leave from her faculty position at the university a few years ago because, as she joked, “I couldn’t work 70 hours a week anymore”.
“I didn’t disclose that I had MS in my professional life – ever. It was a word of advice that I was given when I was initially diagnosed: to never tell an employer that I had MS. I always had that in the back of my mind. So even when I was obviously struggling, I never actually disclosed. It was part of my way of coping, of navigating my scholarly pursuits, my career, being a parent, being in relationships, with my family and friends.”
She has returned to her employment with an entirely reframed attitude of self-advocacy and optimism.
Indigenous Realities of MS
Rheanna has long been a leader and advocate in the BC Indigenous community, including obtaining the high-profile position of the first Senior Advisor to UNBC’s President for Aboriginal Relations in 2015. As she becomes more public about living with MS, she observes the gaps in how the disability community engages, serves, and involves Indigenous people.
“When I was first diagnosed with MS and for years afterwards, everyone – neurologists included – kept saying to me, because I’m Métis (or mixed blood ancestry), ‘This is likely coming from your European ancestry, not from your Métis side’. So really categorizing MS as a ‘white person disease’. I’ve heard from other Indigenous people with MS that they have had similar experiences or have been told, “You may have something other than MS because you are Indigenous”.
While Indigenous people represent 4.9 per cent of Canada’s total population2, the research into this specific population is limited. What research does exist shows more rapid disability progression among Indigenous peoples3, increasing rates of MS within First Nations populations4 and an even higher prevalence of mental illness alongside MS in First Nations people compared to non-First Nations people5.
Amplifying Voices of Indigenous Peoples Living with MS
Last fall, Rheanna spoke with CBC about her experience of living with MS, which had been largely invisible to the public. The reaction she got reinforced how important it was to put herself out there and be visible for others.
“After I spoke on the radio about my MS and there was a CBC article produced, I received a lot of support and encouragement from my community, from people across the province, our country, and even the United States. A young Indigenous woman from BC who lives with MS reached out on Facebook and writing, ‘Everybody kept telling me that First Nations can’t have this disease’.”
While not necessarily ‘newsworthy’, even small things Rheanna has done, like having an Elder welcome attendees and open each session of the UNBC MS Student Support Club’s Northern Speakers Series, can spark change.
“It’s a little thing, but it changes the delivery and perception of the material and how meaningful it is for a larger community of people who may not have been considered before.”
Asked how organizations that serve people with disabilities can do better for Indigenous peoples, she says, “[The key] is getting people with the lived experience and knowledge involved. Let them find their place within the context of the organizations, including places they live and work, and welcome different perspectives. That’s an area where I see still having a long way to go. It’s great to have statements and it’s great to have policies, but unless you have people with disabilities fully involved in real and relatable ways, you’re never going to get to places of true compassion and understanding.”
The MS Society of Canada was thrilled to have Dr. Rheanna Robinson join the Board of Directors in 2021 and excited to have her to bring her perspective, valuable experience, and voice to discussions.
“I’m trying to navigate how I can make my contributions to the world and still pursue the things that are important to me, particularly advocating for Indigenous communities,” she humbly says.
Rheanna is transforming the denial that kept her disease diagnosis a secret for decades into powerful fuel to ensure other Indigenous people are represented and fully integrated into Canada’s conversations about disabilities and multiple sclerosis.
1. Hahmann, T., Badets, N., & Hughes, J. (2019). Indigenous people with disabilities in Canada: First Nations people living off reserve, Métis and Inuit aged 15 years and older, https://www150.statcan.gc.ca/n1/pub/89-653-x/89-653-x2019005-eng.htm.
2. Aboriginal peoples in Canada: Key results from the 2016 Census, https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025a-eng.htm?indid=14430-1&indgeo=0.
3. Saeedi, J., Rieckmann, P., Yee, I., Tremlett, H., & UBC MS clinic neurologists. (2012). Characteristics of multiple sclerosis in aboriginals living in British Columbia, Canada. Multiple Sclerosis Journal, 18(9), 1239-1243.
4. Marrie, R. A., Leung, S., Yu, N., & Elliott, L. (2018). Lower prevalence of multiple sclerosis in First Nations Canadians. Neurology: Clinical Practice, 8(1), 33-39.
5. Marrie, R. A., Hall, N., & Sadovnick, A. D. (2016). Multiple sclerosis in First Nations Canadians: a pilot comparison study. Multiple Sclerosis Journal–Experimental, Translational and Clinical, 2, 2055217316666093.