We left off my biographical posts with my brother and I sleeping in a stairwell. Not the best situation, in winter in Massachusetts. Frankly, it was downright miserable. We spent a few days sneaking into various dining commons to stay fed, but it wasn’t remotely sustainable.
Here is another place where memory diverges. I recall seeing Martina in the university craft center, and going in to talk with her, because she looked interesting. She maintained that a mutual friend of ours, Tam, pointed me in her direction. By the time I got around to asking Tam, he honestly could not recall. It’s not the most vital point to be sure about, but it did have an outsized effect on my life, and it saddens me to be unsure of the truth of the matter.
Regardless, I went into the craft center, Martina and I spoke, and the end result was that I acquired a job and a room for my brother and I. Being a personal care assistant, and particularly a live-in, requires a certain sort of person. You need to be capable of handling the needs of the job (Depending on the needs of the person, these can be quite personal. I refuse to draw a clearer picture.) and able to be surprised with shifts out of nowhere.
The live-in deal, you see, is this: in exchange for free rent, you trade away your right of refusal. If a shift isn’t going to be covered, and nobody else wants it, you have to take it. This can work anywhere from tolerably to terribly, depending on how the rest of the situation stands.
Here are some reasons I had to cover a shift:
Co-worker didn’t feel like coming in
Co-worker totaled their car
Co-worker went on break and never came back (This was a fun one, Martina was panicking over this person’s well-being, they were off playing video games)
Co-worker did something else egregious, got fired, and there we were (both on the day in question and until we found a replacement)
Co-worker had MRSA (“Can I come in anyway? I’m medicated!” Martina: “Not with my compromised immune system.”)
A number of my friends of the time ended up cycling through Martina’s employ. Some moved on, others…
At one point she went on a trip, taking the mail room key with her, and leaving all of our checks in a locked mailbox, which left some of us in an awkward position: A car had been impounded, the fee for it was rising by the day, and the price was already painful for the person in question. I watched them pick the lock, because it seemed like the least bad of the options. She fired them. I remember arguing with her on the phone about this being a bad idea and unevenly implemented, as I had at least been present and not stopped events. I was not fired, but I was covering shifts.
Another thing about being her live-in was that I went on a lot of trips with her. Martina got around; it was actually pretty impressive how much she travelled, and lots of other people didn’t want to make a multi-day commitment. The most intense trips were ADAPT actions. ADAPT originated as Americans Disabled for Accessible Public Transport, focused on getting wheelchair accessible lifts on buses. In 1990, due in no small part to their activism, the Americans with Disabilities Act was passed, and they updated their acronym to Americans Disabled Attendant Programs Today. Now, they focus on getting PCA services to be an option as compared to nursing homes, the assumptive default. (Nursing homes are awful. Inadequate Equilibria [https://equilibriabook.com/] has an excellent explanation of why without ever touching them as an example.) ADAPT has a tendency to surround a relevant building, lock it down as much as possible, and chant until someone comes and talks to them.
This, it turns out, works.
Every action I’ve been to, that day’s activity ended when someone from the system admitted that these were people, and deserved to be heard. I remember quite vividly being present when we held an entire government building, including the parking garage, chanting, “Just like a nursing home YOU CAN’T GET OUT!”. I’ve helped block intersections, I’ve chanted at government offices, I’ve stood in potholes on the street to guide the march line away from them, and I’ve helped distribute the in-action meals (McDonald’s) that kept people going.
They’ve marched across states, remained stalwart and resolute through rain, snow, apathy, and opposition, and generally kicked ass for 42 years. I’ve watched crowds of them calmly wait while being told that they would be arrested if they did not disperse, and held the line. I’ve seen hundreds of them arrested, and I’ve cheered when they came back to the hotel in small groups after being released. I’m proud to have taken part in their story.
That said, ADAPT actions are rough on PCAs. Six days of getting up early and going to bed late and being on the march and doing your normal duties plus helping out plus marching, it’s a lot! Harder than any work experience I’ve had, save the Hell Year. Lots of people were not up to taking it on, and so with Martina I went. I wish, in hindsight, that I’d stepped up for more. Taking part was good for me, and I think the knowledge that my work supported someone who was part of this group and shifting the world to be a little brighter is a lot of how I worked for Martina as much as I did over the fifteen years since we met.
This has run on perhaps a little longer, and a bit more rambling than I intended, but ADAPT was a huge part of who Martina was, and no explanation of her could be complete without it. They’re some of the most alive people I’ve ever met, and more people should know about them. I hope this moves at least one person to consider volunteering for an action, or at least looking into the organization, the causes for their cause, and update their views about what the ‘right’ thing to do for people with disabilities is.
Join me next autobiographical section, wherein I move hundreds of miles, meet possibly the most psychologically broken person I’ve ever known, and study home repair in a home that had previously been repaired with cereal boxes!