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The Bill That Would Legalize Discrimination Against My Daughter

HR 620 has already passed the House and is at risk of being taken up in the Senate.

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My daughter was born 26 weeks into my pregnancy. When Charlie arrived she weighed one pound and 12 ounces, and she was just as long as my finger. During the first few weeks of her life, I watched her overcome what felt like insurmountable obstacles. She struggled to breathe, her stomach wasn’t mature enough to digest food, and her skin was so thin it was agony for her to be held. I worried that we were asking too much of her, but she fought to survive. Today, she is a joyous 5-year-old, though she has residual effects of her significantly premature birth. Charlie was incredibly susceptible to infections, and she has delays in speech and fine motor development. She will go through life with a disability: she needs help tying her shoes, using scissors, and opening her lunch.

Throughout 2017, my family and I have fought constantly for Charlie’s health care. I have marched, spoken at press conferences, and met with more representatives than I can count to try to explain what Congressional Republican attempts to repeal Obamacare and slash Medicaid funding would do to my family. I’ve spent days, hours, and weeks travelling back and forth between my home in Charlottesville, Virginia, and Washington, D.C., because I knew fighting for Charlie’s life meant fighting for affordable, accessible, and comprehensive health care.

When Charlie was an infant, I would often sit and watch her. Sometimes, she would forget to breathe and I would gently remind her with a nudge. When we defeated Graham-Cassidy, the last attempt to overturn the Affordable Care Act, it finally felt like we could both breathe more easily.

But now there is a new threat on the horizon: HR 620, the ADA Education and Reform Act, has already passed the House and is at risk of being taken up in the Senate. If it’s passed, the bill will change key provisions of the Americans with Disabilities Act (ADA), shifting the burden of accessibility from businesses to people with disabilities.

For 28 years now, the ADA has given people like Charlie the unassailable right to be part of public life: They cannot be discriminated against at work or in school, and businesses have to be accessible by including things like curb cuts and accessible bathroom stalls. Over the years, people with disabilities have needed to pursue litigation under the ADA when businesses refuse to become accessible. And it’s worked. Our society is much more accessible today than it was nearly three decades ago when disabled activists had to climb up the steps of the Capitol to get attention. But HR 620 threatens to send us back to that time — a time when people with disabilities were excluded from public life.

Under HR 620, people with disabilities will have to notify businesses that they are violating the ADA, citing very specific details regarding the provisions of the statute that apply to their particular situation. Business owners would then have up to six months to make “substantial progress” toward fixing the issue, but they don’t have to be fully accessible. That is at least six months before the person filing the complaint can access a restaurant, or a movie theater, or a book store that’s effectively barred its doors to people with disabilities — even though accessibility has been the law for almost 30 years.

No other marginalized community needs to demonstrate why they deserve to access a public space, let alone cite specific legal provisions, in order to be able to access that space. Why should Charlie have to?

The ADA made the American Dream possible for a generation of people with disabilities. Now my child is being told the American Dream is no longer available to her. This isn’t the United States of America I know, and it isn’t the society I want to live in.

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