In the course of the essay, she described her all-important assistant (“Carmen lifts me into my chair and straps a rolled towel under my ribs for comfort and stability. She tugs at my clothes to remove wrinkles that could cause pressure sores.”) And I found myself wondering about Carmen. Johnson’s day took up two lives. When did Carmen get to do what she wanted, instead of being another person’s legs, hands and fingers?
He later says, in relation to this:
I’m not sure, but there must be some criterion by which we say, “your pride cannot come at the cost of another person’s humiliation.”
This either illustrates a lack of understanding about how services for disabled people work, or a lack of understanding about how services for non-disabled people work. I can’t tell which.
In disability services, unless it’s arranged differently, generally workers work in shifts.
For instance, if someone needs someone around at night, they might have a roommate who sleeps in the house and is compensated with free or discounted room and board, possibly with their own phone line and cable TV already paid for, as well as more conventional pay. That roommate might handle bedtime and morning routines.
If the person does not need help except with getting up and going to bed, that might be all they need. If they need more, then different workers will cover the shift during the day. The key word being “shift”. A shift is not your whole life. Some people do want to be full-time support staff, both live-in and in the daytime, but the key word there is “want”. And quite often there are regulations preventing staff from working more than a certain number of hours a day, even if they want to.
Since the author of that blog was so concerned with the idea of Carmen “being another person’s legs, hands, and fingers,” I’m also going to talk about jobs that are not specifically disability-related.
I’ve worked on a ranch before. I painted the fences and the barn, washed the carport, fed the horses, removed and put on their faceguards, fed the dogs and cats, shoveled the horse shit out of their stables, put it in a wheelbarrow, and dumped it at the other end of the horse pasture. I did this for minimum wage; it was considered good “job training” by the owners of the group home and also meant that they didn’t have to be the ones who kept up the grounds.
Side-note for anyone wondering: I have since lost the motor skills and stamina to be physically capable of a job like that, or I’d take that or a similar one (in terms of physicality, not necessarily setting; basically my strengths used to lie in doing hands-on physical work) in an instant.
When I was working, that meant I was working. Being someone else’s legs, hands, and fingers. The fact that they were non-disabled didn’t change that fact, it just in this case changed what the job was. (And the fact that I was disabled didn’t factor into it much either: They figured even if I was considered mentally and emotionally incompetent I could still paint and shovel.)
How many jobs are there out there in which you get to do exactly what you want during the time you’re on shift? Not many. When you have a job, there are always guidelines, whether loose or strict, on what you’re allowed to be doing. Even if you don’t have a boss, there’s still the law, and the practical fact that you’ve got to get money out of whatever you’re doing. Even if you love the content of your job, you still can’t goof off during it.
Interestingly, when I’ve talked to staff about why they’ve chosen this line of work, one of the things that comes up is that many of them do feel like they get to be themselves. Of course, given that the pay is crappy and many of these agencies will hire nearly anyone, another factor is that they may have been unable to get any other job.
Which leads me into what the real problem is for staff: The pay. Many of the best staff go on to get better jobs, for better pay, and I can’t blame them. Many of those actually would do better at this kind of work than the other work they get, would enjoy this kind of work more, but have to leave these jobs because they simply don’t pay well at all. That’s a far cry from feeling degraded or humiliated by the work itself, which many actually enjoy and others may not exactly enjoy but don’t hate any more than any other job.
Plus, if disabled people all had the staff we needed, that would also provide more jobs, which isn’t generally considered a horrible thing either.
But as far as jobs working for disabled people go, they are no less in the person’s control than many other jobs that the other blogger is not complaining about. The underlying idea, then, must be that those other jobs are worthwhile, while these are a waste? It’s hard to tell. In a more equal society, this wouldn’t even be questioned. I think it is the devaluation of disabled people itself, leading this person to devalue personal assistance jobs working for us. There can’t be much other explanation, given that there’s nothing done in a personal assistant’s job that isn’t done in other more respected (I guess) jobs, from housekeeping to nursing. In a more equal society, of course, it would be recognized that the support disabled people need to get through the day is as worth doing as the support non-disabled people need to get through the day, support that is already recognized as necessary (and therefore not even thought about as support) and extensively planned for despite at times staggering expenses.