Here is something you should know about me: I am proud to be disabled.
I can imagine some of you looking very puzzled right now. Admitting this fact about me is something I could have said quietly just a few years ago. Why? By all accounts, I am not supposed to be “proud” of my disability. Not according to society, at least. But then again, I’ve never given much thought to social conventions. Fortunately, I am not alone.
July is Disability Pride Month, which is generating so many much-needed conversations about living with a disability and what it means to celebrate that. People with disabilities make up the largest minority group in the United States, with 61 million adults living with a disability, according to the CDC, who are one and four people.
Disability Pride Month is a time to celebrate people with disabilities. It is also a time to call for changes towards a more inclusive and accessible world. The first Disability Pride Day was celebrated in 1990, coincidentally, the same year that the Americans with Disabilities Act (ADA) was passed; The core legislation was the greatest victory for the rights of people with disabilities of our generation and “prohibits discrimination and ensures that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life: enjoying employment opportunities, purchasing goods and services, and participating in state and local government programs and services. “
Perhaps that’s why this year, as we celebrate the ADA’s 30th anniversary, this idea of pride in disability feels even more poignant and important. While I might have come to a place of pride now, I didn’t always feel that way.
I was born with Freeman-Sheldon syndrome, a genetic bone and muscle disorder that primarily affects the face, hands, and feet. I have had about 25 surgeries to straighten my legs as well as to correct my scoliosis. I spent most of my formative years in and out of the hospital. Sometimes what was more difficult than all those surgeries was feeling so different from the others. I grew up without ever seeing anyone who looked like me, not on television, not in movies, not in books or even in magazines. At a time when all I wanted to do was fit in, it was hard to stand out that much.
People are surprised when I say that I am proud to be disabled because we still live in a society where pride and disability do not belong to the same sentence. Disabilities are considered shameful. They are regarded as a bad thing. People should feel sorry for us. Who would want to be disabled? That is a question I have heard too often from many people. Some people have told me that a disability and a wheelchair is not something to be proud of, it is nothing to celebrate and that it is something you should be ashamed of.
Of course, the cruel words of people only repeat the messages that society sends about disabilities. We live in a culture that treats disability as something bad or negative. From an early age, people with disabilities are taught to be ashamed of something that is a big part of their identity. I was ashamed of my disabled body for many years; I was not comfortable with my own skin and, curiously, I became a writer who helped me change my perspective. The more I wrote about disabilities and my life, the more I felt a kind of cleanliness. It was as if the act of writing literally rewritten the voice in my head that had been looped for so long. The voice that told me it was ugly. The voice that told me it was unworthy and unpleasant. The voice that told me that my disability was embarrassing. It was as if I was shedding my old skin, giving way to self-love and self-acceptance after so many years of shame and hatred.
I can’t help but feel that 2020 is a kind of calculation when it comes to disabilities, a needle move toward inclusion, accessibility, opportunity, and acceptance. Those are the things disability activists have been fighting for years to achieve. Because where the ADA is about literal access, Disability Pride Month is about visibility and representation. It’s about inclusion. It is about opportunity. It’s about celebration. It’s about having a seat at the society table.
I am always proud to claim my seat, take up space without apology, and be included. Finally, we are seeing this trend of disabled people claiming what it means to have a disability. Usually, we don’t see the words pride and disability together, but for disabled people like me, the two words go hand in hand. “Pride for Disability” is a declaration as much as a celebration, where the disabled community screams, “Yes, disabled people want to be seen and heard. And guess what? We’re not going anywhere!”
My pride in disability has taught me to be more vocal. Talk. And yes, to show my face, especially through countless selfies on social networks. People with disabilities are here and we are proud. While Disability Pride Month may be about the disability community, it is also important to have the support of people without disabilities.
Much of the pride in disability centers on identity. I know things like “I don’t see your disability or your wheelchair” are a compliment, but those words are really painful. He despises my lived experience as a disabled woman. It is like saying that my disability does not exist. Since my disability is part of my identity, it is like saying that I do not exist. Once again, seeing disability through the lens capable of disability is bad and the healthy body is good. I’m supposed to be seen as “normal”. But guess that? Spoiler alert … I am disabled. And it’s not a bad word.
I hope that someday we do not need a whole month to remind people that it is okay to celebrate disabilities and that society will celebrate us because they see our inherent worth and dignity as we do. Until that day, however, here is a reminder once again: Please look at my wheelchair. See my disability. See all of me.
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