My post for ADA 30 has been in the works since ADA 29. I started thinking about what I wanted to say just a few days after the anniversary, because the thirtieth anniversary of the Americans with Disabilities act is a big deal. The ADA was the legislation that was supposed to give my community freedom, equal rights. It was supposed to make it possible for us to fully participate in society.
But as I started thinking over what I wanted to say about the upcoming anniversary I realized very few of those goals have been reached, at least not fully. Disabled people still face barriers to education, employment, fair wages, healthcare, housing, marriage and more. We are penalized for having assets over a certain limit. Many are forced to choose between receiving necessary healthcare and getting married. And those are just the ways the government discriminates against us.
Disabled people are judged unfairly, by strangers and those closest to us, for nearly every action we take. We try to work, go to school or both, we’re not really disabled. If we aren’t able to work or continue our education, we’re not trying hard enough. If we choose to have children we’re seen as incompetent, negligent or even abusive for forcing a child to grow up with disabled parents. But choosing to not have children means dealing with comments about how easy life without children must be. This is of course when we’re not fielding asinine questions about our ability to even accomplish the physical act of sex/having a child.
All of this is and was the reality for disabled people every day before and since the passing of the ADA thirty years ago. To put that into perspective, I’ll be thirty in September. I’m part of what we call the ADA generation. I’ve reaped the benefits of that legislation every single day of my life.
Here’s a quick rundown of how that went: I fought like hell through over 50 surgeries from birth, through my public school career (mainstreamed K-12), then graduated. I attended college and graduated with a bachelor’s of arts (because funnily enough a BS in journalism wasn’t offered). Then I got married to my favorite human and we began life together. I soon lost my government assistance (supplemental income and insurance). We were at that time living in an apartment that was barely capable of meeting my access needs.
When we moved we scoured the area for accessible housing we could afford (just as we’d done with the first apartment and as we would do with the house we live in now). We’ve been married six years and I could probably count on both hands the months we’ve been able to cover our expenses on our own. Oh, I forgot to mention I got (some of) my assistance back, but the income cap means my husband makes just above minimum wage.
I say all that to say, I am lucky. We are lucky. The support of family, friends and countless others throughout the years got us where we are today. There are so many people in the disability community who are in much different circumstances, even thirty years after the passing of the ADA.
Merely existing as a disabled person is a daily struggle, and that’s especially true right now. Watching what my community is going through in the face of the COVID-19 pandemic scares me to death. It scares me and makes me angry. There’s been so much preventable loss of life (a third of cases are from long term care facilities), so much blatant disregard for the disabled and aged communities. Essential workers (some of whom are disabled themselves) are being forced to endanger their lives for the sake of the economy.
In the face of all that, what is there really to celebrate? Not the government, not the enforcement of the ADA or the betterment of disabled lives, so what are we celebrating? Well, hear me out, what if we celebrated us? What if instead of marking the thirtieth anniversary of the ADA for some false sense of achievement, we celebrate our disabled existence?
I for one think there’s plenty about the disability community worth celebrating. Some of the smartest, strongest, bravest people I’ve ever known are disabled. It makes me incredibly proud to share a community with disability activists and leaders who have fought and continue to fight for our place in this world. Their dedication and steadfastness have fueled my own journey in disability justice. And then there’s me. That’s right I said it; I’m celebrating myself, for at the very least continuing to exist when I’d rather not.
Disabled people are always being talked about as “pretty in spite of being blind” or “independent in spite of being a wheelchair user”. Well maybe this is the year we celebrate ADA in spite of how far we still have to go. So who’s with me? Shall we celebrate in spite?