For International Persons with Disabilities Day (December 3, 2017), I’ve decided to post this interview that I did with Stephanie Chipeur.
The last time I saw Stephanie Chipeur, she and I were chatting and standing outside of our Canadian Legal History class.
Today, although she sits in a motorized wheelchair, she continues to stand for the rights of persons with disabilities.
Stephanie Chipeur is a lawyer who I met while I was in law school. She was one of my classmates in our Canadian Legal History class at McGill University, where I was completing my LL.B/B.C.L. and where she was pursuing her LL.M. at the time. (Fun fact: We didn’t know it at the time but she and I were both raised as Seventh-day Adventists).
In 2014, the day before her Master’s thesis was due, Stephanie was in a car accident in New Brunswick. Her car ran into a moose and which resulted in a C5/C7 spinal cord injury, causing her to become a quadriplegic. She spent a couple of months in Moncton and another year hospitalized in Calgary, where her family is based. She moved back to Montreal to begin her doctorate of laws degree at McGill’s Faculty of Law, now with a shift in focus in her doctoral thesis and a desire to write about disability and human rights (and building codes more specifically).
No doubt, when I first heard about the accident on Facebook it really hit home. Quadriplegia and disability in general often feel so foreign and far from many of our current realities. For many of us, when we think of quadriplegia, we think about Rick Hanson or Christopher Reeves – so distanced and intangible is disability for many of us. But now someone I knew – someone who I met as an able-bodied person – was suddenly living with quadriplegia. I knew disability was real but suddenly, disability became more real to me.
We all should care about disability really. As someone once said in a presentation in another one of my classes in law school, we will all be disabled at one point. We are all in a temporary state of ability. At the very least, injury often and age gradually brings on an onset of disability. Disability happens to “other” people yes, but it can and most likely will also happen to you and I, regardless of our current ability. Fine, I’ll admit – there are those who die able-bodied and there are octogenarians who run marathons. The thing is, to quote the “Crippled Scholar”: “Accessibility helps anyone who has to push a stroller or carry boxes. Full accessibility and its maintenance make life easier for everyone who has to move around. Disabled people are simply given more equal access. Access that is often otherwise denied.” There are also visible and non-visible disabilities: mental health issues and diabetes can also be considered disabilities. So if you are looking for a personal stake in disability matters, well… you have one.
I reached out to Stephanie’s family to send my regards and her father kept me and others abreast of Stephanie’s progress via e-mail updates.
Today, Stephanie is a powerful disability rights advocate (see here, here, here and here). I thought it would be interesting to connect with Stephanie to 1) say “hi” and touch base with her and 2) learn more about living with a disability. I thought she would be able to provide an interesting perspective as a person who has lived the majority of their life as an “able-bodied” person, but also as a lawyer and a newly disabled young woman. I admit that there is much I don’t know about living with a disability, so I thought that talking to Stephanie would be a great first step.
Here’s our interview.
Simone: Some people who live with a disability don’t consider themselves disabled or don’t like euphemisms like “differently-abled”, so I will start with this question: Do you consider yourself a person with a disability?
Simone: What is more appropriate to say – “quadriplegic” or “person with quadriplegia”?
Stephanie: I don’t really care – it’s more appropriate to say someone with quadriplegia than “quadriplegic.” But I often say that I’m quadriplegic.
Simone: So, what is it like to live with a disability?
Stephanie: So often everyone starts with the medical model vs. the social model, and it is often the environment that is disabling as opposed to the person themselves. I don’t think of [disability] theoretically. After I had the accident and started to do research in the field, I started reading different approaches and the one that sounded most true to me was the idea that the environment is disabling and there are things that can be done to remedy that. There is also very much a bodily component. It is not the case that if you fix the environment the person will no longer have the disability. Disability is still inherent to that person’s body.
I appreciate that it is important to understand disability in terms of social problems of exclusion but don’t forget that we are embodied and there will be issues around quality of life and illness. There is no way environment will be completely adjusted so that I don’t feel disability inherent to my body.
It is an everyday lived experience that I think about literally and that’s the approach I take in my academic work – concrete lived experience has guided my approach in my studies, which differs from how my able-bodied colleagues tackle it. They start with the Americans with Disabilities Act and UN Convention on the Rights of Persons with Disabilities. To me, the Convention is irrelevant to my everyday life. What matters to me is building codes. It sounds like minutiae, but it has a bigger impact on my life than the Convention. In terms of Canada’s implementation of the Convention, there is really nothing.
Simone: So disability is real and is not merely theoretical… Let’s talk more about what it’s like and about ableist views of disability. What have you had to adjust? What considerations should able-bodied people have? Why should able-bodied people care?
Stephanie: Why should able-bodied people care? There is a lot of exclusion. What surprised me was there were a lot of issues beyond getting used to your body changing. I think it really surprised me how hidden this issue is. It relates a lot to the environment being so exclusionary – especially in Montreal where there is so much physical inaccessibility, people are not aware of persons with disabilities because they don’t see them and you don’t think about their needs. [And] you don’t see them because it is very difficult to get around. And the bus system is dangerous…
Simone: How so?
Stephanie: The bus driver doesn’t look out for you. I always have to request for people to move out of the area [on the bus designated] for persons with disabilities. In the winter, I was trying to get home one night, and there was a storm, and the bus driver wouldn’t open the ramp. I wouldn’t have had any way to get home that night because taxis weren’t operating either. I would have had to get home by ambulance.
Simone: So what happened?
Stephanie: The passengers just overrode the driver and physically opened the ramp for me. People shouldn’t have to be put in those situations. Other cities have such great transit systems. Ottawa, San Francisco, Calgary – I’m treated so well by bus drivers in Calgary. They are so patient. They wait for me to get comfortable and turn my chair off. In Montreal, they don’t wait for me to turn off my chair [before they start moving the bus] and so I could easily fall onto my power chair and plow over people on the bus.
Ramps are often broken. It is not part of the protocol to have ramps serviced and checked. Montreal is probably the worst city for this. Unfortunately, that’s where I’ve chosen to do my doctorate. But it helps my research.
There is so much that people don’t realize about exclusion in everyday life.
Adjusting to my body – what is more upsetting is that I’m so excluded from so much because the environment and the systems that work for everyone else don’t work for people with disabilities. It’s so complicated to have a social life because I have to research beforehand “Can I get in there? Can I do that?” “Do they have wheelchair accessible washrooms?” “Do they have ramps?” and you are caught in a maze of the city’s infrastructure not working for you.
Simone: How have your friends played a role — whether negatively or positively? How have they reacted to you?
Stephanie: So many of them came to visit me in the hospital – in Montreal or New Brunswick — and so that’s been so great. Unfortunately, people don’t realize how shitty it is I can’t go to people’s houses, especially in Montreal. Sometimes they would tell me, “I’d love to invite you over but you can’t get in” and that’s hurtful. Luckily I have people in my life that just come over to my house for everything [every event or celebration] and luckily I have people who adapt because it’s not a big deal [to them].
I was lucky — recently some friends built me a ramp [at my house] because no contractor would build a ramp because they couldn’t build to code and wanted to avoid liability. [My friends] built me a ramp for free. It’s been huge to have that kind of support. So those have been some of the highlights of that. I think it’s a huge change when you don’t have someone in your life with a disability. My disability has now made people aware and made my friends call attention to the fact that many businesses and people in general are being exclusive. My friends have also become advocates.
Simone: That’s the mark of a good friend and good friendships… Speaking about friendships and relationships, one question that I have always had is: how ought we talk about disability? How should we relate to someone who finds themselves in a similar situation? When something traumatic or life-altering happens to someone, often we tiptoe around the person and the new situation that they are facing because we don’t want to aggravate or offend them. So our exchanges end up being awkward. Have you experienced people being suddenly awkward around you?
Stephanie: One of the best ways to feel less awkward is to spend time with the person and stick around and eventually the awkwardness goes away. Also, I can tell you how my life is but people don’t really understand until they actually spend a day with me – whether it’s getting stuck somewhere because of transportation or not being able to find a bathroom for blocks and blocks. [By hanging out with a person with a disability] you’ll eventually learn what you can do to help and support your friend.
Simone: I also wanted to talk a little about the interplay between autonomy and privacy and dependence and independence in your life. How independent are you?
Stephanie: It relates back to our earlier conversation about the environment vs. the body itself. I would be a lot more independent if the environment was a lot more accessible. I would have more independence if I could reliably know that bathrooms are available to me. But no matter what, there are some things that I just won’t be able to do; I won’t be completely independent even if the environment is adjusted. This may be may be gendered. Men with spinal cord injuries have more pride in doing everything on their own. I and more and more women are more ready to take help because we don’t see ourselves as less independent [in the accepting of the help]. Many things take longer, but when it becomes something that you are used to it becomes a natural part of your life, I guess.
Simone: It sounds like you have found community. Is there a community for people with quadriplegia?
Stephanie: There is definitely community. Even out of the hospital they introduce you to other people. So much of this lifestyle is learning from others. Doctors only help with acute care and so it is beneficial to hear from people with your condition. In every city I’ve visited I’ve gotten to know a lot of people with spinal cord injuries because I think it’s one of the main sources of support that people get.
Simone: How have your views on ableism changed?
Stephanie: I realize so many things I didn’t before and there is certain privilege in not being aware. Some people have an attitude of “why did this happen to me.” But I’m more like “why wouldn’t this happen to me?” This can happen to everyone and it is important to recognize that and not be so oblivious and expect that you’re going to be completely independent your whole life.
You’ve heard of David Lepofsky right? He says that disability affects a minority of every one but we will all experience temporary or permanent disability at some point in our lives.
It is silly to think you will be independent and strong at every point in your life.
All of us are going to age and so to think how we treat the elderly is so shocking to me. I’ve become more aware of aging and how we often have people leave their homes to go live in an old persons’ home because we don’t build our homes and societies to accommodate aging.
Simone: Do you get offended if someone offers to help you?
Stephanie: I definitely don’t get offended if people help. The problem is that people think that because you are in a wheelchair it is okay to impose their thoughts and comments on you. Unfortunately, when you are in a wheelchair you can’t get away and you are forced to smile through the comments – comments like “I heard of this great cure…” or “Oh what happened. I feel so sad for you.” Just because a person has a disability doesn’t mean they want to hear from you. Don’t assume that they [want or need your pity]. Since the accident, people definitely talk to me more. When I’m alone in a wheelchair, people sometimes ask and assume that I need help, which is not helpful.
Simone: I’ve definitely learned a lot from you and your experience. There’s lots of food for thought here. Thank you and keep in touch!