I Have Cerebral Palsy And The ADA Is Crucial To My Life. But There's Still Work To Do.

On the 30th anniversary of the Americans with Disabilities Act, "disabled people are still holding their breath."
The author
The author
Courtesy of Claire Forrest

I was born in January 1990 ― 15 weeks premature, my future unknown ― and I would eventually be diagnosed with cerebral palsy and use a wheelchair. On March 12, 1990, I was still in a neonatal intensive care unit. Miles away in Washington, more than 60 disability activists crawled on their hands and knees up the steps of the Capitol to demand the passage of the Americans with Disabilities Act.

By the time the ADA Act passed on July 26, 1990, I had only been home from the hospital for two months. On that day, President George H.W. Bush claimed that the law would “ensure that people with disabilities are given the basic guarantees… independence, freedom of choice, [and] control of their lives.”

Reading over those words now, it’s difficult to fully believe in them, because I do not believe those promises have been upheld.

I’m immensely grateful to have grown up under the protection of the ADA. Through it, I was able to attend mainstream schools alongside my non-disabled classmates. In high school, I was a member of the swim team and earned varsity letters alongside my non-disabled teammates.

I had an amazing college experience where I lived in a fully equipped and accessible dorm room on campus. I’m proud to have been an NCAA Division III swimmer. The first student from my college to study abroad in a wheelchair, I was protected by the ADA when my flat in London tried to charge me extra for an accessible unit. I cannot drive, so I love using accessible buses and light rail trains. I’m currently employed full time and recently completed a Master’s degree.

While these things haven’t come without challenges, it is because of the ADA that I’ve been able to push for accommodations and become an independent, contributing member of society.

I turned 30 this year and for much of the year leading up to my birthday, questions ran on a loop in my brain: Have I advanced far enough in my career? What are my thoughts on marriage? Do I want kids? Am I going to run out of time?

I know I wasn’t the only one to ask these questions; in fact, women are conditioned to focus on them. Still, I felt embarrassed as I verbalized these issues and concerns to a therapist. I also knew that those questions carry more weight for me because I am disabled.

I have had to advance my career while living in a society that could legally pay me less than minimum wage if it is thought a non-disabled person could do the job better. I’ve left mock interviews with the recommendation to pursue speech therapy because while everything I say sounds intelligent, my voice sounds, “a little sleepy.” Although I’ve never once had to lift 20 pounds on a job, that requirement remains on far too many job descriptions.

As women, we are forced to fit into impossible confines. As a disabled woman, those boxes are even more suffocating. How can I hope to find a partner when I’ve both been told I’m too pretty to be in a wheelchair but I’m somehow never woman enough to overcome infantilization? I’ve experienced what some in the disability community refer to as a delayed adolescence. While my friends got driver’s licenses, went on first dates and had first kisses, I underwent surgeries, begged my doctors to believe my pain when my medical implant broke inside me, and fought my high school for proper accommodations all before the age of 18.

“As women, we are forced to fit into impossible confines. As a disabled woman, those boxes are even more suffocating.”

And if I am still growing up, how can I even begin to think about kids? Public accommodation does not seem to apply to the doctor’s office. At the start of my only pelvic exam to date, no one knew how to proceed when I told them that my feet couldn’t go in the stirrups. With no accessible equipment alternative, four nurses held my body to the exam table. Even with the help of a prescribed sedative, I wept the whole time. My doctor, who specializes in women’s health, admitted that she hates to give me substandard care, but it’s clear neither one of us wants me to go through that again.

I was delighted when Tammy Duckworth of Illinois — a disabled woman — became the first sitting U.S. senator to give birth. I’ve cried happy tears over finding firsthand accounts of physically disabled mothers on social media, because the representation is so few and far between. For me, parenthood feels almost completely out of reach. Even if the process became more accessible medically or even if I were to adopt, what is the cost in a society that does not view disabled people as willing and able parents?

Six months ago, on that January morning of my birthday, I woke up and exhaled a sigh of relief. Thirty. And while I still have more questions than answers, I’m still happy, I’m still here. I still have time. Life with a disability is challenging, but through connecting with my community and learning the history of the disability rights movement — something my advanced placement U.S. History textbook and prestigious liberal arts education left out — I’ve built a life that is also filled with joy.

“I believe that on our 30th anniversary, disabled people are still holding their breath. We are still waiting for that sigh of relief.”

The ADA celebrates 30 years amid a global pandemic that has both threatened our livelihoods and forced non-disabled people to experience a glimpse of a life where things are suddenly inaccessible to them, their temporary ableness more apparent than ever.

The ADA protects us in many ways, but it is still not enough. As a white cisgender disabled woman, I’ve had immense privileges and I know that my quality of life is harder to achieve for disabled people of color and those who identify as LGBTQ. The act does not erase stigma or attitudinal barriers. And, since so many buildings were grandfathered in under the ADA, baseline accessibility is never a guarantee. Churches and religious organizations are still exempt from adhering. I believe that on this 30th anniversary, disabled people are still holding their breath. We are still waiting for that sigh of relief.

So, what questions are we asking as the ADA turns 30? I have some ideas:

Will we train medical professionals to work with people of all body types and abilities? Better yet, will we allow more disabled doctors, therapists and medical professionals into the field?

Will we view disabled people as fully capable employees, romantic partners, parents and friends?

Will we let disabled people express what we need, loud and clear, and will you listen?

Will we realize that a law is just a law, and if things are to truly change, then attitudes must change?

I still don’t know what I want for my career, or whether I want to be married or have kids. But I do know that I want what every person wants: independence, freedom of choice and control of my life.

I hope in my lifetime, I get to see it. It’s been 30 years. I still have time. America still has time. So let’s ask those tough questions and dig deep down inside. It is time.


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