I wrote the following poem last year but have updated it since it’s the 33rd anniversary of the Capitol Crawl, an event where disability activists of all ages literally crawled up the steps of the US Capitol to highlight inaccessibility and urge the passing of the Americans with Disabilities Act (ADA). Perhaps the most memorable image people have is that of eight-year-old Jennifer Keelan-Chaffins, who had been protesting and fighting for her right for two years at this point. She is featured in the photo for this post, one that was taken by Jeff Markowitz for AP Photo.
33 years.
33 years ago, my disability family staged a massive demonstration that was part of a decades-long build up to the Americans with Disabilities Act being passed.
33 years ago, people I will never meet fought for a baby who had no idea what kinds of pain they would face – let alone the frustrations, discrimination, and ableism.
33 years ago, my community – a community that I share with a quarter of my fellow USians – fought for the most basic level of access to goods, services, and care.
33 years since and, really, very little has changed. It’s incredibly difficult to get accommodations, exceptions, and other things the average abled person believes are just handed to us, that caregivers are always required and given just as freely as whatever benefits they think we’re approved for automatically.
33 years ago, another pandemic raged on as the powers that were ignored science and helping development decent treatments because of who was hit the hardest. My queer and trans siblings were engaged in ACTUP protests and demonstrations, and they continue to have to do so.
33 years on and much is still the same. At least now, we’re talking about things and recognizing issues on slightly more widespread basis. The ignorant and bigoted continue to be even more openly so, though, and I fear for what may be to come. The disability community ignores harm done to those facing multiple levels of systemic oppression, especially racism, proving that our community is far from immune to bigotry from within its ranks. The Black Panthers helped sustain our Disability Rights fights and we don’t talk about them, mention them, give thanks for them.
33 years on and I wonder how much change will actually and truly come in the next 30. Will those of us on the frontlines giving our all to create change succeed? Will we become the future Judy Heumanns, Ed Robertses, or Audre Lordes? More importantly, will our society improve? Will my niblings or their children live in an accessible world? After all, I don’t care if the individual things we do are remembered – I care if we progress.
“Legacy. What is a legacy?
It’s planting seeds in a garden you never get to see.”
-Lin-Manuel Miranda