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As a part of Cerebral Palsy Awareness Month, I interviewed some friends with CP. (My own interview will be posted at the end of the month.) I wanted to get our impressions on some aspects of having a disability, but I also wanted to include general questions, to normalize those of us with CP. I think it's important to realize our perspectives about things may be similar, but we are also our own unique people.
First up, my friend, Kathleen:
What is the most important thing you have learned about yourself?
The most important thing I have learned about myself is that I am who I am today in spite of AND because of my disability. There were times in my life when it seemed like it would be easier if I wasn’t disabled, especially when I was struggling with the brutal environment that is junior high. I still have moments when it feels like being non-disabled would be so much easier. But then I think of all the people and experiences that have come into my life through my disability and I realize that I owe so much of my identity to them. My disability is not all of me, but it is part of me—a part that I value and celebrate. Learning to accept my disability as part of my identity in a peaceful and prideful way has helped me immensely. So has learning that being proud does not mean that I have to be smiley all the time about every aspect of CP. All of us need a day to whine about our spasms now and again.
What is your favorite thing about the month of March?
Feeling like spring is coming!
What is your favorite thing about yourself relating to your disability?
I like the perspective it gives me. Because of my disability, I learn from such a diverse group of people. It makes me think about life in a way I probably wouldn’t otherwise and allows me to have a broader view about what makes a valuable life. It makes me so sad to think of all the people I most likely wouldn’t know if not for my disability. I met some of my closest friends in physical therapy!
How do you deal with people's invasive questions, comments, or stares?
It very much depends on the context and how the person asks. Most of the time, I don’t mind answering questions if the person asks nicely and seems genuinely interested in learning. I’d also rather them get an answer from me than to make an assumption, go to “a specialist” that too often speaks for us, go on a crummy Google search. But I’m definitely not obligated to answer a question or educate at all times. I don’t exist to be a teaching tool and sometimes, I take a day “off” from educating if I’d rather just buy my groceries without dealing with random lady from the neighborhood’s questions. There are definitely times and places that are more appropriate than others… and certain questions that only belong in a certain setting. For example, I might be willing to answer a certain question in a formal educational setting (like a disability education panel) that I wouldn’t be willing to answer in the middle of the local movie theater.
It also makes a difference to me if it’s an adult or child. I feel more inclined to answer children because they are often genuinely curious and still learning. I still expect them to ask politely though and not to feel entitled to an answer if I’m not in the mood.
If someone dares to say, “What’s wrong with you?” I will say, “What do you mean by that?” and roll away.
What is your favorite song?
It’s so hard to pick just one song. I don’t think I can! But I most love songs that connect me to a happy memory. Some of my favorite artists include Taylor Swift, Five for Fighting, Kelly Clarkson, The Beatles, and James Taylor—a healthy mix of old and new!
What is one thing you want people to realize once they meet you?
I hate it when people say that “they don’t see my wheelchair” because it implies that seeing my wheelchair invalidates my personhood or something. Please see me AND my wheelchair—my chair is a part of my life and it doesn’t need to be erased to make my humanity visible.
Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.
This is tough because there are so many great ones. I think I have to go with the late Harriet McBryde Johnson, a disabled lawyer and author. Her work and ideas have very much shaped the way I view disability. Her books Too Late to Die Young and Accidents of Nature helped me articulate why many stereotypical narratives of disability make me uncomfortable—most specifically, the stereotype that we’re all hung up on “curing” our disabilities.
Have you ever watched TV, movies or a music video and thought, "That person's just like me!” What was the show/movie/video? Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?
Sadly, there are not many media sources that portray disability in a very empowering way. But I’m a big fan of Zach Anner, a comedian with cerebral palsy who makes videos and had his own series about travel on the Oprah Network. It’s awesome to see a disabled person in the media talking about disability and other topics in a humorous, engaging way. I love his “Work Out Wednesday” videos in which he jokes about his lack of athleticism… especially the one about crawling on the treadmill.
What is your favorite piece of adaptive equipment and why is it your favorite? (Wheelchair, walker, crutches, etc.) (Can be yours or someone else's.)
My wheelchair. It has given me so much freedom to go places and do things without worrying about falling. It also allows me to save energy for other things… energy that would all be spent standing (on a walker) without it. My wheelchair has literally been with me everywhere through so many important moments… graduations, birthdays, good times, and bad times. I almost feel like it’s a friend rather than just an object. I love decorating it with buttons and trinkets that show my personality.
What is your favorite scent?
It’s tough to pick just one. I love the smell just before it rains… even though for me it’s a warning to get my power chair inside!
On a more sentimental note, I love the smell of the cologne my late grandfather wore. It connects me to so many memories and to his love for me. There are still traces of the smell in my grandparents’ house, and I always hope that my clothes will pick it up. I miss him and the scent helps me to feel that he is close by.
First up, my friend, Kathleen:
--
What is the most important thing you have learned about yourself?
The most important thing I have learned about myself is that I am who I am today in spite of AND because of my disability. There were times in my life when it seemed like it would be easier if I wasn’t disabled, especially when I was struggling with the brutal environment that is junior high. I still have moments when it feels like being non-disabled would be so much easier. But then I think of all the people and experiences that have come into my life through my disability and I realize that I owe so much of my identity to them. My disability is not all of me, but it is part of me—a part that I value and celebrate. Learning to accept my disability as part of my identity in a peaceful and prideful way has helped me immensely. So has learning that being proud does not mean that I have to be smiley all the time about every aspect of CP. All of us need a day to whine about our spasms now and again.
What is your favorite thing about the month of March?
Feeling like spring is coming!
What is your favorite thing about yourself relating to your disability?
I like the perspective it gives me. Because of my disability, I learn from such a diverse group of people. It makes me think about life in a way I probably wouldn’t otherwise and allows me to have a broader view about what makes a valuable life. It makes me so sad to think of all the people I most likely wouldn’t know if not for my disability. I met some of my closest friends in physical therapy!
How do you deal with people's invasive questions, comments, or stares?
It very much depends on the context and how the person asks. Most of the time, I don’t mind answering questions if the person asks nicely and seems genuinely interested in learning. I’d also rather them get an answer from me than to make an assumption, go to “a specialist” that too often speaks for us, go on a crummy Google search. But I’m definitely not obligated to answer a question or educate at all times. I don’t exist to be a teaching tool and sometimes, I take a day “off” from educating if I’d rather just buy my groceries without dealing with random lady from the neighborhood’s questions. There are definitely times and places that are more appropriate than others… and certain questions that only belong in a certain setting. For example, I might be willing to answer a certain question in a formal educational setting (like a disability education panel) that I wouldn’t be willing to answer in the middle of the local movie theater.
It also makes a difference to me if it’s an adult or child. I feel more inclined to answer children because they are often genuinely curious and still learning. I still expect them to ask politely though and not to feel entitled to an answer if I’m not in the mood.
If someone dares to say, “What’s wrong with you?” I will say, “What do you mean by that?” and roll away.
What is your favorite song?
It’s so hard to pick just one song. I don’t think I can! But I most love songs that connect me to a happy memory. Some of my favorite artists include Taylor Swift, Five for Fighting, Kelly Clarkson, The Beatles, and James Taylor—a healthy mix of old and new!
What is one thing you want people to realize once they meet you?
I hate it when people say that “they don’t see my wheelchair” because it implies that seeing my wheelchair invalidates my personhood or something. Please see me AND my wheelchair—my chair is a part of my life and it doesn’t need to be erased to make my humanity visible.
Do you have a role model or a favorite celebrity in the disability community? If so, who are they, and share a little about them.
This is tough because there are so many great ones. I think I have to go with the late Harriet McBryde Johnson, a disabled lawyer and author. Her work and ideas have very much shaped the way I view disability. Her books Too Late to Die Young and Accidents of Nature helped me articulate why many stereotypical narratives of disability make me uncomfortable—most specifically, the stereotype that we’re all hung up on “curing” our disabilities.
Have you ever watched TV, movies or a music video and thought, "That person's just like me!” What was the show/movie/video? Describe the moment that made you feel the most seen, heard or validated as a disabled person/person with a disability?
Sadly, there are not many media sources that portray disability in a very empowering way. But I’m a big fan of Zach Anner, a comedian with cerebral palsy who makes videos and had his own series about travel on the Oprah Network. It’s awesome to see a disabled person in the media talking about disability and other topics in a humorous, engaging way. I love his “Work Out Wednesday” videos in which he jokes about his lack of athleticism… especially the one about crawling on the treadmill.
What is your favorite piece of adaptive equipment and why is it your favorite? (Wheelchair, walker, crutches, etc.) (Can be yours or someone else's.)
My wheelchair. It has given me so much freedom to go places and do things without worrying about falling. It also allows me to save energy for other things… energy that would all be spent standing (on a walker) without it. My wheelchair has literally been with me everywhere through so many important moments… graduations, birthdays, good times, and bad times. I almost feel like it’s a friend rather than just an object. I love decorating it with buttons and trinkets that show my personality.
What is your favorite scent?
It’s tough to pick just one. I love the smell just before it rains… even though for me it’s a warning to get my power chair inside!
On a more sentimental note, I love the smell of the cologne my late grandfather wore. It connects me to so many memories and to his love for me. There are still traces of the smell in my grandparents’ house, and I always hope that my clothes will pick it up. I miss him and the scent helps me to feel that he is close by.
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| {Image is: Kathleen smiling in glasses and a maroon dress. Photo credit: Kathleen Downes} |
Kathleen Downes is a 23-year-old woman with Cerebral Palsy and a graduate of the University of Illinois at Urbana-Champaign, where she studied community health and disability studies. She hopes to pursue further education in social work. In her free time, she enjoys reading, writing, and participating in disability activism. She lives in New York with her family and her elaborately decorated power wheelchair. You can find more of her work at The Squeaky Wheelchair
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