We recently marked the International Day of Persons with Disabilities and I feel it is appropriate to address a sensitive subject: the questions many people are nervous about asking people with disabilities.
Today, we’re breaking down those barriers with the help of Antoine Rolle, who lives with cerebral palsy. In this candid interview, Antoine honestly addresses common misconceptions and answers uncomfortable questions — all in the spirit of creating a more understanding, accepting, and inclusive world for all.
How would you describe your disability?
Don’t make disability a negative term. At least for me it has been. Everybody is different, so it’s okay to ask that question. Some people will say, “Hey, don’t call me disabled, call me something else.” So it’s a great step to get to know the person and ask them what they’re comfortable with and how they perceive their disability. Ask them questions and find out how they feel.
Can you tell me more about your disability?
I am from the Bahamas. I was born prematurely at 29 weeks and diagnosed with cerebral palsy. In simple terms, cerebral palsy is a brain disorder that causes damage to the brain and affects motor skills. Symptoms can be mild or severe.
What is the biggest misconception people have about your disability?
One of the misconceptions people have about my disability is that I’m fragile. People say, “Oh, I don’t want to hurt you.” That’s fine. If you’re hurting me, I’ll let you know. But I’m not as fragile as people think. I’m not made of glass.
What can you do to make the interaction more comfortable for you?
Treat me like a human being. Don’t make a big deal out of me. Don’t be afraid to ask questions.
Is there anything you wish more people understood about living with a disability?
Some people think our lives are depressing. But we live happy, fulfilling lives. Not everyone is depressing, we’re very happy. So do we have our struggles? Yes, of course. But doesn’t everyone? Is there any human being, able-bodied or not, who doesn’t have their struggles, their ups and downs? I think that’s what people don’t understand.
There’s a common stereotype that disabled people are usually friends with other disabled people, but is that true?
It just depends. I only know a few people with disabilities, and I didn’t know many people growing up. So I wouldn’t say no. I would just say that we don’t just have friends with disabilities. Some of us know more people with disabilities. And in my case, I didn’t know many people.
Do you think other disabled people have a better understanding and a higher level of awareness of the struggles you are experiencing?
Once, when I fell, a friend with cerebral palsy asked me, “Are you OK?” There was no note of panic in his voice. He understood exactly what had happened because of our shared experience. If someone is blind and I have cerebral palsy, we don’t know what it’s like to be blind. But we understand each other in that sense because there are some commonalities that we face as people with disabilities. But our experiences are different. It would be very dangerous to say that all our struggles are the same, as it puts us in a box.
How does your disability affect your daily life?
You will find it tiring, it will take longer to reach your destination, you will waste a lot of time and you will not be able to utilize your time as effectively as others, especially if your destination is not easy to access.
Also, there are social implications. Some people are afraid to ask me questions. Just because I’m disabled, I feel awkward around disabled people and it’s hard to build relationships. Some people have a habit of saying, “Well…” because they don’t want to hurt my feelings. I think there are social implications too, which is, do I know if this person is being honest with me?
What adaptations or adjustments have been helpful to you?
Elevators should be big enough for a wheelchair, or they might not. Put handicap buttons on bathroom doors, or here at the University we don’t have such buttons everywhere. Also, make sure all buildings are handicap accessible and don’t assume they are.
Make sure your sidewalks are properly paved. Unpaved and chipped sidewalks can cause a lot of problems for wheelchair users. Build a disability-friendly culture in society and help people understand that this is not just about someone. This is about everyone. Everyone may end up in a wheelchair at some point. It is important to create a culture that recognizes that this is not just about the portion of your family that has a disability. This affects all of us.
What do you think about the representation of people with disabilities in the media and education?
I wish they would cast a real disabled man in a disabled role. I think that would be fun to watch. Also, I often see scenes, especially in older movies, where they bully kids with disabilities. Why do they always make us look weak?
Media and entertainment could also be more diverse when it comes to people with disabilities. Movies tend to show only people in wheelchairs or blind people, so it may be that those are the only people shown, but slowly this is changing.
In terms of education, I think it would be good if we could learn about disabilities in schools, starting from kindergarten and continuing through high school, so that when children encounter disabled people on the street or at work, they won’t feel so awkward, because they’ll be exposed to disabilities through their education and it won’t be such a taboo.
What challenges do you face that others may not be aware of?
One of the things people don’t realize is that we can feel pretty isolated from a lot of social activities. We need to make sure that activities and events are accessible to us. When we have concerts or snow sledding or other events, it’s really important to make sure that the events are accessible to a variety of people so that they don’t feel isolated. Sometimes it’s hard to admit that this is what we’re dealing with, that this is isolation. We just want to belong.
How can we be an ally to people with disabilities?
You can be an ally in many different ways. You can be an ally by saying, “You are not alone. As an able-bodied person, I may not know what you go through on a day-to-day basis, but I will do my best to help you and help you speak up.” And of course, you also need to educate yourself and raise awareness for people with disabilities. For example, knowing how to use a wheelchair. When I go to people, they often say, “I don’t know how to push a wheelchair.” Well, you’re already half way there. You said the first words.
You can also learn sign language. We teach people in certain industries how to do the Heimlich maneuver. You can do the same with sign language so that deaf people always have a way to communicate in social situations. You can also be an ally by making sure that your home, your workplace, your university are accessible. Instead of being told by a disabled person that something is not accessible, ask yourself why there is no disabled button there. Things like that.
How do you deal with situations where people are insensitive or ignorant about your disability?
I joke about it, and some of them don’t really know, so I try to educate them by saying, “No, that’s not true.” But sometimes, people just want to be mean, so that’s why I use humor.
One comment that can come off as a bit insensitive if not executed properly is when people say, “You are my inspiration. You are a hero.” For what? For going to the grocery store? People don’t want to be called heroes for doing something mundane. Or when you see a poster that says, “If he can do it, so can you.” What does this mean?
What is an accomplishment or ability that you are proud of that people tend to overlook because of your disability?
I am proud of my perseverance, many people back home didn’t expect much from me and I am really proud of myself for being able to immigrate to another country on my own despite my disabilities.
I started Disability Day at UPEI, I started a club, I raised awareness, I put a flag up at the assembly, I got my degree, and these are things that some people might not think much of, but I am very proud of.
Is there anything else you’d like to add?
Don’t be afraid to ask questions of people with disabilities. Disability is not a negative word. It’s a pretty standard word. Some people may not like the word, so use the word they are comfortable with. I’m okay with being disabled. Being disabled is not necessarily a negative thing. I’m not your inspiration. I think there is a lot of work to be done. December 3rd is International Day of Persons with Disabilities, but don’t limit disability to this day. Don’t think disability can’t happen to you. It can happen and it doesn’t make you less.
Grace Biswas
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