My first couple of home health aides were picked by a California state agency. As a drug user learning to use a wheelchair, I didn’t exactly like the idea of a random stranger assigned to come to my home. But as it turned out, some wouldn’t even come to my neighborhood. Some did, and were racist and insulting. One came back for her second day wearing a Hazmat suit.
The only real option was to go through an agency that has you choose your own candidate, who then hopefully passes the background check. This is how I came to have my current health aide, who doesn’t have a problem with my meth use. That’s how we met.
My insurance had determined that I qualify for home health aide coverage 15 hours a week. In the couple of years since then I’ve learned to move my body from the chair to the bed and back again, but this still leaves laundry, cooking, grocery shopping, cleaning. And most importantly: picking me up when I fall out of the chair.
This is a much more regular occurrence in my life than I’d have guessed; it happens a couple of times a month. Meth helps me manage my depression, and sometimes this means I stay up instead of going to bed. But the longer I stay in the chair the more I tend to get sores on my legs, and so I fidget a lot trying to relieve the pressure. The motorized chair itself is unwieldy and surprisingly hard to get in and out of. It malfunctions a lot. Medicare only covers a new one every five years, but there’s no way it’s going to last that long. Not sure what happens when it stops working for good.
If my aide is around when I fall out of the chair, he can Hoyer-lift me back into it. But the flip side of hiring someone I used to party with is that he often doesn’t show up when he’s supposed to.
The fire department has a good system, when it works.
When you’re in a wheelchair people look at you like you can’t take care of yourself, like you don’t know what year it is. The other tenants in my building don’t think I should be allowed to live here. They say I should be in a nursing home, because I’m not ambulatory. Even if that made sense, they must know by now that Medi-Cal and Medicare don’t cover long-term care. If I had a way to fix the situation, I would do it.
I don’t think their real issue is the chair. It’s the drugs, and the way they perceive older Black men who use drugs. The chair compounds it.
It seems to offend them that I live under the same roof they do, when everything they know about drug users tells them I’m supposed to be in jail or dead. They call the police on me regularly. Unlike my health aide, cops and EMS always show up right away—leaving me no time to hide evidence of drug use. Paramedics recently saw me trying to slide a glass pipe under the bed and told me I shouldn’t use meth. I told them they were in my home, and they hadn’t been invited.
My Medicare doesn’t cover medical alert bracelets, since they aren’t technically medical devices. Besides, they’re designed to call EMS or family; many of us older gay men don’t really have those options.
The fire department has a good system, when it works. I can call 311 and request a wheelchair assist 24/7; they come put me back in my chair; then they leave. This is what I need, nothing more and nothing less. But it only works if you have a working phone within reach. If you don’t, you stay on the floor.
“Sorry, but I don’t need police here!” I yelled out the window. “No guns, thanks!”
A few days ago someone who works in the building knocked on my door and asked how I was doing. I said, “Well, y’know. I’m on the floor.” They said they’d call an ambulance, and I said do not call an ambulance, EMS won’t help—please call the fire department. They called an ambulance.
The ambulance came to the building, but the EMS workers didn’t come upstairs. I could hear them from my window telling my neighbors that they’d been here before and couldn’t do anything for me because they only did hospital transport, and I wouldn’t go to the hospital. Call the fire department, they said, and drove off.
A security guard who wants to get me busted took over. I recognized his voice as he called the cops.
“Sorry, but I don’t need police here!” I yelled out the window. “No guns, thanks!” By this point I’d been on the floor for 24 hours, with no food or water. I stayed there until my aide showed up, only a day late.
He spends more time with another client in the building he found after he started working with me. Someone ambulatory; less needy, I guess. I don’t think it’s unreasonable to ask that after 24 hours I should no longer be on the floor, but even the fire department once told my social worker that I was using the wheelchair assist service too much. I wonder what is the acceptable number of times per month to fall out of one’s chair, and whether it’s any higher for people who don’t use drugs. Or who aren’t Black.
In drug-user communities we take care of each other, often because no one else will. I wish my aide was more reliable, but I also know my life would be 10 times worse without him. And I don’t want to fire him because that would make his life worse, too—he’s also an aging drug user trying to navigate these same systems that are biased against us.
When he turned 65 and started collecting Social Security, he was shocked to find that his check was $60 per month. He sold drugs his whole life. There’s something especially cruel about surviving a life of hustling all the way to retirement age, only to have the government inform you that you’ve never worked.
I’m not sure how he didn’t see it coming. Maybe he didn’t expect to live this long. Maybe he never had the luxury of thinking about more than one day at a time. If he had a way to fix the situation, he’d probably do it, too.
Photograph via United States Patent and Trademark Office