'I'm proud of my disability': How a wheelchair ramp and the ADA changed my life

This feature is part of the ADA 30th Anniversary series, which marks the 30th anniversary of the Americans With Disabilities Act, civil rights legislation which prohibits discrimination based on disability, provides accommodations for employees with disabilities, and requires public spaces to be accessible.

In July 1990, I was 8 years old and enjoying the carefree days of summer: going to the pool, reading books at the library and getting excited for my birthday the following month. But as a young girl with a disability, my life was about to change in the most remarkable way with the passage of the Americans With Disabilities Act (ADA).

The ADA celebrates its 30th anniversary this year and this milestone signifies a hard-won battle for disability rights and inclusion. The landmark legislation prohibits discrimination based on disability and it guarantees that people with disabilities have equal opportunity to “participate in the mainstream of American life” — everything from education to employment to recreation to government. In other words, the ADA gave disabled people opportunities and access. For the first time, people like me had legal civil rights protections that gave us freedom and the chance to thrive in a world that wasn’t built for us, but for the able-bodied.

I was born with Freeman-Sheldon Syndrome, a genetic bone and muscular disorder. I’ve had more than 25 surgeries to correct joint contractures and scoliosis and because I can’t walk, I’ve had an electric wheelchair since elementary school. That means that I’ve required various accommodations provided by the ADA, but because I started school three years before the law went into effect, my parents were the ones who initially had to advocate for my needs. My elementary school didn’t have a wheelchair ramp, for example, making it impossible for me to get inside the building, so my parents saw to it that the school built one.

Before long, that ramp was in place and it was one of the first times I remember my parents teaching me about the values of advocating for yourself and your needs. As a disabled woman, advocating became routine for me; it’s a necessary part of living with a disability and of navigating the ins and outs of the able-bodied world. Advocating for myself has gotten me through college and into my career as a freelance writer.

I’ve never been afraid to speak up, obviously, and in a world where so much sometimes feel out of my control due to my disability, I’ve learned the sheer power of my own voice. I’m not sure who I would be in 2020 if it weren’t for the ADA. It’s literally changed my life in countless ways, but I also know how important it is to keep advocating and to keep moving forward. When people ask how they can support the disability community, I always say it’s simple: Listen to us. Listen to the people who are living with the disability every day and take your cue from the disabled people in your life. We know what we need — after all, we’ve been advocating for our entire lives.

More than 30 years later, that ramp is still there. I sometimes think about all the disabled students who came after me and how that ramp was there for them, welcoming them into the world of education. I like to think that they wouldn’t even think twice about it, that seeing a ramp in front of their school is something they’d just expect and it wouldn’t be something that they’d be surprised to see.

That’s my hope for the future of disability rights. I’d love to see our society get to a place where accessibility and accommodations aren’t headlines because they’re just so commonplace. Where disabled people don’t always have to advocate for themselves.

More than anything, though, I want disabled people to be proud of who they are. I want them to know that their voice has power. And I want them to live in a world that fully includes them!

Video produced by Kelly Matousek

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