Today is the 21st anniversary of the Americans with Disabilities Act (ADA). When it passed, we had a dance at the disability summer camp where I got to be normal teenage girl for two weeks per summer, complete with pretty dress, jewelry, and boyfriend I foolishly thought I was going marry. We met at camp. And as for marrying him, which looking back I’m really glad I didn’t do, I was thirteen, what can I say.
I remember that night so clearly. The counselors made a construction paper American flag and put a yellow wheelchair on it. I, being a proud American, thought that its passage met that I could do anything I wanted. Just like the American Dream, I was told to (and to degree still do) believe in.
But I grew up and found the world not as accepting as the ADA promised. Laws still existed that kept me from working without losing needed benefits (thankfully that trend seems to be changing). Employers assumed that I get sick and miss work a lot. , which met they didn’t want to hire me. This is in spite of the fact that I don’t get sick more than the average person. It’s true that I have immune system issues, but I manage that by not being around communicably sick people (if I can help it), getting a flu shot, taking my meds, and living on OJ. I also have recently started going to the gym and being more mindful of the food I eat, which feels like its helping.
But there are still issues. Bus lifts don’t always work. Many spaces I would like to enter, especially local businesses and revolutionary spaces, are inaccessible. For example, a local restaurant that I friend of mine owns which I know has a portable ramp became momentarily inaccessible when the person he hired to run the business while he went on vacation couldn’t locate the ramp.
Public transit doesn’t run everywhere. I live in Hampshire Country, but it’s almost impossible for me to get to Franklin County and get around. This means I miss many cool, literary events, which just might help my freelance career.
Every summer, the Pioneer Valley Transit Authority (my local bus service) tries to tell me that I can’t go out after 7pm on weekdays because the late bus is canceled. This ist true and I win the argument every time, but you would think they’d write it down.
I need to move into a busier environment with more bus service and roll-ability to activities, so I can stop straining my freelancer/public assistance benefit budget in an effort to pay a $300 paratransit bill (each one way time cost between $2.50 and $3.50). If I lived on a better bus route, I’d simply get a monthly bus pass and pay $30 a month to ride the regular bus. They are all accessible here.
But affordable, accessible housing is impossible to find. My mom will cosign for an
apartment, but it’s big risk to her as I live on about $900 a month total and rent would be about $700. I need to spend a good deal of money finding things and going to event to write about and sell my self-published poetry books. What if something goes wrong one month? Then my mom would end up paying my rent and I would never hear the end of it.
The last issue of access I would like to talk about in this blog is the issue of
access to marriage. Being bisexual, I celebrated same-sex marriage equity being declared in NY, but my smart advocate friend and native New Yorker, Julie Maury, reminded me that if most people with disabilities (PWD_ marry. They lose some, if not all, of their benefits. All this does is create unhealthy dynamics in their marriage and them more prone to partner abuse, as which as we are already as PWD (especially those in mixed ability relationships) are already more likely to endure because it makes you economically dependent. Who thinks that’s a good idea?
There a thousand more things, I could write about. the United States doesn’t have a nationwide personal attendant services and supports program, but funding nursing homes is mandated. Many PWD leave family, friends and We have the only Global North country without some form of universal healthcare.
But still I raise my glass to the ADA. “You’re 21! Let me buy you a daiquiri.” All PWD in America are better for your passage!!