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Kathleen Downes

 

Living with cerebral palsy is an adventure. My black sparkly power wheelchair and I have seen it all together. Society often says that a wheelchair “confines me.” To them, I say this. My wheelchair is my freedom. It allows me to move on my own, to explore and discover the beautiful world around me. It is decorated with buttons and stickers that celebrate my personality. We are a team. I don’t want people to say that they “don’t see the wheelchair.” My wheelchair is part of my life and knowing me means understanding my needs. Someone who “doesn’t see the wheelchair” can’t fully appreciate the complex experience of my disabled identity. My disability is undeniably, unapologetically part of me, just like my hair color or my American heritage. It is not all of me and it is only one layer of my personhood, but without it, I would not be the woman I am today. So no, I don’t want you to say you “don’t see the wheelchair.” I want you to say that you see the wheelchair and me and still see before you a strong, empowered, and whole person.

I do not “suffer” from cerebral palsy. It is not something I “battle” or “fight.” The true obstacles I face are the attitudes and prejudices of our society. Attitudes that build stairs instead of ramps. Attitudes that render disabled lives less worthy. There are many challenges in the medical reality of my disability. It does not always feel fair or easy to have achy joints, to need help putting on shoes, or to need to pee on a schedule. But I am proud of my life and my body nonetheless and the pain caused by cerebral palsy itself is nothing compared to that caused by ableism and ignorance. In order to lead a healthy life, I depend on the love and support of my friends and family. They always believe in me and challenge me to be a better person every day. I especially treasure the friendship of other disabled young people. Our shared experiences bond us in a very special way. We can laugh together even on a bad day. I can count on my comrades in disability to comfort me when I’m dealing with a painful surgery and celebrate with me at those moments no one else would quite understand- like when a new powerchair finally arrives after months of fighting with the insurance company. I enjoy writing as a way to share my feelings about my life with a disability and to educate others. I maintain my own blog about disability justice called The Squeaky Wheelchair. My blog has enabled me to express myself and to connect with people across the globe that care about disability rights. To maintain my physical health, I exercise in physical therapy and use a walker to practice weight bearing. Using the walker is really hard work especially because I am afraid of falling, but I know that my muscles and bones need some time upright. When I begin grad school in the summer, I will again be hiring and supervising personal care assistants to make sure I am able to accomplish daily tasks like bathing and dressing. Managing my care is a headache but I am grateful to have input in the process. Depending on other people to do such simple yet essential things for me is frustrating, but it has taught me the true value of interdependence, cooperation, and teamwork. I often joke around that my life is a big, never-ending group project. It can be a pretty absurd life, but it is mine and I think it’s beautiful.

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Image shows me seated in a pink wheelchair wearing a dark blue cap and gown at my undergrad graduation. I am smiling in front of a large statue of a woman with her arms extended outward, located on campus. I have my arms outstretched like the statue. A blue and orange cord is draped over my shoulders.

If I could give words of wisdom to other people with cerebral palsy, I would remind them to be proud of who they are. Being proud does not mean you have to be happy all the time about every aspect of being disabled. I too need days to complain about my spasms. Being proud means recognizing that a disability, while challenging, can also make one innovative, strong, and smart. A disability can connect us to people and experiences we may not otherwise have found or noticed. I would encourage others with CP to accept that there are some things they will never be able to do. For example, I will never climb the stairs of the Empire State Building or be an astronaut. However, there are so many things they can and will do. I may not be able to ride a bike or shoot a basketball, but I am a great writer and I love to read books. People with cerebral palsy and even people without disabilities can’t do anything they put their minds to, but each of us can do something that is valuable and important.

I would advise other people with disabilities to learn as much as they can about the laws that protect our rights such as the Americans with Disabilities Act (ADA). Even though we have made great strides for inclusion, there are still times when we need to fight for what we deserve. It’s never too early to start advocating for yourself. Unfortunately, there are unaccommodating people and places out there, but their attitudes cannot and will not stop us from leading meaningful lives.  To the girl with cerebral palsy who is feeling lonely and excluded, remember that you are whole. It can be tempting sometimes to blame cerebral palsy itself for many of the obstacles we face and many of the events we have been left out of. However, remember that a truly loving world builds places and spaces that everyone can access. You don’t need to change yourself to fit what the world calls “normal.” Society needs to genuinely include all people. As I said when addressing cerebral palsy in an open letter,

“Not everyone you have introduced into my life has been kind, and you have made me aware of ugliness in the world that other people can blissfully ignore. But more so, you have shown me beauty, and helped me understand that though the world can be ugly, more often it is beautiful, and filled with people whose goodness is astounding. I have been left out of things because of you, and because you’re here there are offices and restaurants and schools and cute little boutiques that are off limits to me because they are not built for people in wheelchairs. However, I’ve learned not to be angry at you, because those places say so little about us and so much about the people who built them. Love builds places and spaces with room for everyone” (Downes, 2015).

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Image shows me standing in a blue walker with black handles that extend upward. My arms are Velcroed to armrests. I am standing in a room with hardwood floors, wearing a pink shirt, jeans and colorful sneakers. My blonde hair is styled in a headband and I’m smiling.

I want anyone with a disability to know that this life is worthy, even when it is confusing and complicated and mind-blowingly frustrating. There are times when someone with a disability can feel incredibly alone, but in those moments, remember this: You are never alone. You are loved, you are amazing, and no part of you is without purpose. Keep going!

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