Stories

People from the communities offered to share their stories in the hope of reaching out, so others will know they are not alone. Sharing experiences of challenges, barriers, success, and support, their stories of resilience and strength offer validation and hope to others. Each person’s story highlights the prism of experiences that defines living with a disability today. The best experts are experiencing the phenomena of disability every day, they are the best teachers.

Themes defining disability

Find out more about the common themes that people from the communities shared when explaining what disability meant to them:

  • I accept myself for who I am
  • There is a need for disability specific information
  • Adaptability resulting in Resilience
  • You can’t take care of yourself
  • Real disabilities are visible

I accept myself for who I am.

Self-acceptance emerged as a significant part of the majority of the interviews, including both the participants who did and did not identify with the word disability.

The theme of self-acceptance was interwoven into stories of living day to day life, with the same types of motivations, goals and relationships as everyone else.

Part of self-acceptance was also described as not focusing on the condition in a way that it would primarily define the individual, causing them to feel unhappy, bothered or less than.

Participants expressed that despite a range of reactions or responses from others, they were firmly rooted in the belief that they were a significant part of their various families, communities or peer groups and they had accepted themselves as they are.

For many of the participants who did not identify with the word disability, the presence of their self-acceptance was considered as a significant factor that defined why they did not have a disability.

You can’t take care of yourself.

This theme emerged in particpants describing that, disability can be defined as the lack of ability to successfully perform the tasks of daily living or employment, necessary for independent living. Examples of tasks include: cooking, cleaning, laundry, groceries, cooking for others, getting to appointments, and caring for children. The participants would often explain that they were not disabled because they could successfully perform these tasks and lived quite independently in doing so.

The second half of this theme is that disability means you cannot participate in the workforce; you are unfit for any job.
Of all of our participants with disabilities who were unemployed, only one person expressed the idea that she would be in too much pain to work.

All of the other participants expressed the desire to work and also had ideas about the types of jobs they would be qualified for or good at. Even if they were currently unemployed, most had held temporary, part-time or full-time jobs in their past and counted this as evidence that they were not disabled.

This element of disability is intertwined with social assistance and the definition that is used to identify which people qualify for a specific type of monetary allowance or pension based on this status.

Adaptability resulting in Resilience

In a variety of different contexts and settings, participants described experiences of adaptability resulting in resilience.  Stories of resilience, were generally described as developing in response to three types of experiences.

 The first is when the person keenly felt the effects of their disabilities, this could either be through personal sensations such as physical or emotional pain.

 The second is the result of a lack of access resulting from barriers in the person’s environment, for example a person with one leg facing a set of stairs.

 The third is when the person feels their condition really sets them apart from other people, they feel different.

 When the participants described either of these three types of situations, they then described a period of time where they did not know if they would be able to find a way around this, and depending on the length of this uncertainty, lack of faith in oneself, self-doubt or fear could also arise.

 However, consistently, participants shared stories of overcoming these challenging situations, and they shared with us the resulting feelings of renewed faith in themselves, as being successful and worthwhile. Themes of this type of resilience were prevalent and significant across interviews.

There is a need for disability specific information.

Throughout the interviews, participants explained that they either felt or knew there was so much to know about different types of disabilities, but they did not have access to this information.

 Participants were searching for information about official diagnosis, cause of the condition, possible treatment options, and strategies to help with day to day life and social inclusion.

 Participants with disabilities were searching for or wanted more information to varying degrees, but each articulated that if they had access to this type of information, they would take it.

 The perception on the effect of having this knowledge, was also a spectrum. The benefits were described as ranging from significant to simple and practical. For example, some described having more information as something that would significantly increase their quality of life, reduce stigma and misinformation in the communities, as well as increase positive self-awareness. Examples of more practical implications were described as potentially being beneficial for learning new methods for making certain activities more accessible, easier, or less time consuming.

Real disabilities are visible

This theme is also closely related to the disability pension. Receiving a pension is a very concrete and visible support that is given to some people in the communities. It seems that the way that people understand who gets this support is as previously mentioned, the assumption that the person is not capable of caring for themselves, and the second is that a valid disability will be visible.
Therefore, the second prevalent theme is, that a “real” disability must be visible.
This was evidenced in comments which rejected mental health and/or specifically substance abuse disorders as “real” disabilities.
Learning disabilities were largely unmentioned and developmental disorders were referred to only if they were extensive enough to be detected by others.

Resilience and Changing Expectations

The great thing about how I was raised was I never heard you can’t do that because of your disability, or you can’t do that. My family was very open to let me do things, as long as I didn’t kill myself, but I never heard you couldn’t do it. My mom has always been very encouraging on what I want to do and I think that really helps cause if you have a foundation that allows you to explore the different things regardless if you have a disability or not.

Participant with a visible physical disability

Je suis capable de faire la cuisine. Je suis capable de faire à manger. Je suis capable de tout. Je suis capable de balayer, laver le plancher, laver le linge, plier le linge, je suis capable tout. Ouain, je suis capable.

 

Participant who was born with a visible disability

Open English Translation

I do all the cooking there. I am able to cook. I am able to make food. I am capable of everything. I am able to sweep, wash the floor, wash the laundry, fold the laundry, I am capable of everything. Yeah, I’m capable.

When I first started working, they were like, I said, “Oh, I don’t know if I could do this!” but then the guy that was… with me from the interview…, he was right beside me, and he said, “You can do this. I know you can do this job. I have faith in you and you can do it.

Participant who has an invisible disability

I’ve contemplated it because… now I know more about it. I educated myself on a lot of things, knowing where she (Mother) came from, knowing what happened to me. And maybe I could help others, this just keeps me on the bright side…You know, I like to think that, I broke the circle as far as in my family and I’m going to try to help out people, you know, I got a lot to live for.

 

A participant with a mental health condition

..quand tu sais que t’as ça et tu l’as… C’est plus facile de trouver des moyens parce qu’au début tu sais pas. « Pourquoi j’ai fait ça? Pourquoi j’ai dit ça? Qu’est-ce que j’ai? » Et quand tu mets quelque chose sur ta condition que t’es en train de vivre difficilement, ben là, t’es capable… Comme moi je lis beaucoup là-dessus. Comme là, je fais de l’arthrose et je lis beaucoup sur ça pour… Fait que quand j’ai su que j’étais trouble d’attention, c’est sûr que j’ai commencé à essayer de comprendre. 

A participant with an invisible learning disability

Open English Translation

When you know that you have that and you have it … It’s easier to find ways because at first you do not know. “Why did I do that? Why did I say that? What do I have? And when you put something on your condition that you are living with difficulty, well there you are able … Like me I read a lot on it. Like here, I have osteoarthritis and I read a lot about it for … So that when I knew that I was attention deficit, I started to try to understand… That’s when I started buying books on attention disorders and everything.

Je parle de mon expérience. Pis ça revient à la personne qui veulent continuer comme ça. Ils vont se retrouver en prison ou six pieds sous terre. Mais, moi j’ai eu à trouver des réponses qu’il a aimé dans la famille à eux autres. Pis j’aide beaucoup les gens même si… Quelqu’un qui était méchant pis il vient chez nous pis il dit qu’il a faim, on lui donne à manger. Comme jamais être égoïste avec de la nourriture. C’est ce que je m’efforce de faire, pis j’aime ça. Il y a quelque chose à aller chercher là-dedans. Je sais pas quoi, mais peut-être de la compréhension. 

A participant with multiple disabilities

Open English Translation

I’m talking about my experience. And it’s up to the person who wants to continue like this. They will end up in jail or six feet underground… ​

And I help people a lot even if … Someone who was mean and he comes to our house and he says he is hungry, he is fed. Like never being selfish with food. That’s what I’m trying to do, and I like that.

But I really like helping… Like when her mother was sick, I was always going to lend a hand to clean up her house, wash the dishes, put her laundry, everything. Dust, the house was clean, nice and clean.

A participant with multiple disabilities

There is not enough information about disability

Ben oui, mais en meme temps c’est…Je sais pas trop comment t’expliquer, mais c’est important d’y croire, mais aussi de pas juste, comment dire… Ne pas trop etre affecte par ta situation, ne pas te trouver des excuses en te disant: Ah, je vais pas y arriver j’ai un handicap. De pas te filer a ton handicap que tu y arriveras pas.

Participant with a visible physical disability

Open English Translation

That’s right, sometimes people say to me, “Ah, why do you have a cane there? “And they know and it is as if for others, a disabled person is people in wheelchairs… They do not know that disability can be so vast.

Participant: But at the same time, the ones with real disabilities were at home and not on welfare.

Interviewer: What’s real? What’s a real disability?

Participant: Well, I mean the visible kind, I’d say.

Participant with an invisible disability resulting from chronic illness

But it is constant. Like, I can’t control it sometimes. I know it’s not, like, a common disability, or even if you would classify it as a disability.

 

A participant with an invisible and common mental health disability

Elle faisait des crises d’angoisse et des crises de panique. Elle, je m’en rappelle, quand elle était à l’université à un moment donné, elle a fait une crise de panique, d’angoisse ou je sais pas quoi et elle sentait qu’elle allait mourir. Tu sens tout le monde, t’sais, les mouvements, fait qu’elle était couchée à terre. Elle dit : « je sens que je vais mourir, appelle l’ambulance. Elle s’en va à l’hôpital et quand elle est à l’hôpital, la crise passe. Fait que là, elle est à l’hôpital, elle dit « ben voyons, c’est niaiseux, j’ai p’u rien »

A mother sharing her daughter's story

Open English Translation

She had a panic attack, an anguish or whatever, and she felt like she was going to die. You feel everyone, you know, the movements, that she was lying on the ground. She says, “I feel like I’m going to die, call the ambulance. She goes to the hospital and when she is in the hospital, the crisis passes. So that she is in the hospital, she says, “Well, it’s stupid, I’ve got nothing.”

 

T’sais comme (nephew) je sais pas pourquoi, mon neveu, je sais pas pourquoi que… Et là, après ça, j’essaie de penser, dans ma famille ou ma grand-mère ou des enfants, il y a tu des… C’est tu génétique, c’est tu transmis? Parce que mon père, peut-être qu’il était comme ça, je sais pas. Ça a été transmis, je sais pas, c’est vraiment… Et vu qu’il y a beaucoup de décrochage et tout ça, tu te dis : « ah, c’est les autochtones, la plupart sont comme ça. C’est leur façon. » Mais en dessous de ça, je suis sûre qu’il doit y avoir des troubles d’apprentissage, des troubles de… Et c’est drôle parce que là, j’étais là, j’ai dit 

 

A participant with an invisible disability

Open English Translation

I do not know why, my nephew, I do not know why … I try to think, in my family or my grandmother or children, there are … Is it genetic, is it transmitted? Because my father, maybe he was like that, I do not know. It was transmitted, I do not know, it’s really … And since there is a lot of stall and all that, you say to yourself: “Oh, it’s the natives, most are like that. It’s their way. But below that, I’m sure that there must be learning disabilities

And it’s funny, I’m sure there are many who must suffer from this kind of troubles and they do not realize.

 

A participant with an invisible disability

Oui parce que les gens, ils… Moi je suis capable de parler, mais on dirait que les gens sont gênés. Je sais pas, je parle pour moi, mais moi, je suis pas gênée pantoute. Je vais faire n’importe quoi, je serai pas gênée. Je vais aller à telle place, je serai pas gênée, mais il y a du monde de même, peut-être, qui sont comme ça. 

 

Qui sont genes de te parler ou qui sont genes d’aller parler aux autres?

De parler aux autres peut-etre. Ou de me parler aussi, peut-etre. Je sais pas comment qu’ils se sentent envers moi.

 

Participant who has multiple disabilities

Open English Translation

Participant: Yes because people, they … I’m able to speak, but it seems like people are embarrassed. I do not know, I speak for myself, but I’m not embarrassed. I will do anything, I will not be embarrassed. I will go to such a place, I will not be embarrassed, but there are people in the same way, maybe, who are like that.​

Interviewer: Who are embarrassed to talk to you or are embarrassed to talk to others?​

Participant: To talk to others maybe. Or talk to me too, maybe. I do not know how they feel about me.

Ableism: Stigma towards people with disability

La première question, c’est : est-ce que vous vous considérez comme une personne en situation de handicap ? 

Tu veux dire quoi, là ? 

Est-ce que, pour vous, votre vision, ça vous crée des obstacles… 

Pour ma vue ? Non, pas du tout. Non, je m’accepte telle que je suis.  

Participant with a sensory disability

Open English Translation

Interviewer: The first question is, do you consider yourself a person with a disability?

Participant: What do you mean?

Interviewer: Do you see your vision as creating obstacles?

Participant: For my view? Not at all. No, I accept myself as I am.

Unfortunately, I think when people see disabilities in people, they see they don’t expect much sadly, they expect you to do the bare minimal what’s required, they won’t expect you to do everything.  I never wanted to be a statistic. I feel like having a disability there’s already a certain expectation placed on you but you only be as good as this, I never wanted that. I wanted everything else.

Participant who was born with a visible disability

Interviewer: Okay, and do you consider yourself a person with a disability?

Participant: No…I get up at 4:30, I’m out the door by 5:30 and I’m at work. Six to two. Five days a week.

Participant who has an invisible developmental disabilities

Il faut que tu t’acceptes de même. Il faut que t’acceptes la réalité. Il faut que t’acceptes la personne que t’es aujourd’hui, t’sais, pas la personne que t’étais hier. Ta journée, elle a commencé la journée que t’as eu ton accident… C’était dur de regarder dans le miroir. Ça m’a pris beaucoup de temps. De sortir dans la rue, ça m’a pris beaucoup de temps. T’sais je disais à ma fille : « Ah tout le monde va me regarder ! Nananan. » Je voulais pas sortir pantoute. Je suis restée chez nous. C’était comme… voulais rien savoir. Je voulais rien savoir d’aller dehors, je voulais rien savoir des… Mais de réapprendre par exemple là, de réapprendre à faire à manger pis tout ça. T’as toute une patente ça.

 

A participant who got a visible physical disability

Open English Translation

It was hard to look in the mirror. It took me a long time. To go out on the street, it took me a lot of time. But I said to my daughter, “Ah everyone will look at me! Na-na-na.” I did not want to go out of my way. I stayed at home. It was like … did not want to know anything. I did not want to know anything about going outside, I wanted to know nothing about it.

As for high school … there was a lot of…I was called a dump truck, I would walk down the hallways and people would make noises as if there was a dump truck going down the hallway. Because my walker is loud and things like that. I had my locker defaced and just some other stories.

 

 

A participant with a visible disability

Professionals with Disabilities: Supporting Others

Non c’est plus aider le monde pis les travailleurs sociaux Autochtones, c’est rare qu’il y en ait. Fait que j’aime mieux que les gens, ils soient plus compris dans notre réalité au lieu de tout le temps expliquer notre réalité à des allochtones ou ben des affaires de même là. C’est un poids de moins pour eux autres d’être mieux compris

 

Participant with a disability who is now a Social Worker

Open English Translation

No it is more help the world…Aboriginals who are social workers, it is rare that there. So our people.. they are more understood in our reality instead of all the time explaining our reality to non-natives… It’s less of a burden for them to be better understood. That’s it, and I know what it’s like to be vulnerable, to be down there. I overcame it during, before my accident and it’s like, it helped me in my journey. I know what it is to consume and I know that this is one of the issues that is most important to fight.

Mais je sais pas pourquoi, mais des fois, je suis triste, je vais observer le monde et tu te rends compte qu’il y en a qui souffrent de troubles d’attention ou des troubles de panique, comme ma fille, elle souffrait, ou des madames qui sont moins sociables parce qu’elles sont moins habituées à cause qu’elles étaient confinées dans leur maison avec de la violence et l’alcool et les enfants. Quand je les vois en train de, t’sais, comme une fleur

Participant with an invisible disability working with victims of violence

Open English Translation

Working in a house for women victims of violence…But I do not know why, but sometimes, I’m sad, I’m going to observe the world and you realize that there are some who suffer from attention disorders or panic disorders, like my daughter, she was suffering…or madams who are less sociable because they are less accustomed, because they were confined to their homes with violence and alcohol and children. When I see them, you know, like a flower…To flourish. Yeah, that’s it. Just that, I’m happy to see that, that they are able to help themselves, to get by, even if it takes time.​

I talk a lot about my experiences to young people here. (The main message I give) ​Always believe in something. Life has purpose, you have to believe it. And believe it. And if I said suicide, bring all the wrong answers with you. Basically, that’s it, never give up. Always believe in something, life. ​

 

Participant who has a mental health condition and working in a community center

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Difference of Opinion

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