Working for disabled people, humiliating?

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The Autistic Bitch From Hell refers to this entry on disability pride in which the author says:

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

11 responses »

  1. You may not appreciate an infantalising analogy, but would the author of that post have said that being a nursery nurse is humiliating? Small children have limited mobility, need help with feeding, bathing etc. But no-one regards that as humiliating work (undervalued, yes, but not humiliating).

  2. And being nearly any kind of nurse (one psych nurse told me a lot of psych nurses go into the field because it’s “the bucks without the bedpans”, so clearly not all nurses have to do these things regularly) means doing similar work for people who are only temporarily incapacitated, and I don’t see anyone regarding that as humiliating work either.

  3. I went and read the original David Berreby post, and I really shouldn’t have. I should be used to it, but this is the kind of thing that makes me feel like someone’s slowly abrading away at my sense of self-worth with sandpaper. I have frequently had to struggle with guilt for receiving, not even assistance with daily living, but academic assistance from the university I’ve been attending. Because, after all, aren’t I merely eating up people’s resources and wasting their time? What good is it to expend the effort on me unless I can perform at the level of, say, Albert Einstein or Stephen Hawking? If I produce nothing of world-changing brilliance, what is the point of pouring the time and energy into me? Those are the questions I go at myself with when I’m in a very decompensated mood and finding it hard to stand myself. And I’m sure I know what someone like Berreby would say to that: “Yes, it is a waste of their time and resources. Go and find a way to make yourself indistinguishable from the non-autistic people around you, because it’s not fair to them.”

    Julian^Amorpha

  4. Errrrr… mixed feelings about that article.

    “Wow I’m thankful I’m not like you” is something I hope none of my staff take away from their job.

    Characterizing people with that particular list of difficulties as “unable to live on their own” is also misleading and typical of the group home industry. It’s likely I’m less able to do a lot of those things than they are, but I live on my own, it’s a matter of how the support is given.

    I’m glad she likes her clients, and that they’re happy, but going the other way with the “wow this person is heroic just to be disabled” angle isn’t much better than the “pitiful” angle. In fact, it’s a variation on the pity thing, just more complex.

  5. Like saying “you did that well for a girl” isn’t much better than “no wonder you did that poorly, you’re a girl”. Yet people who don’t understand sexism often are surprised when the receiver of the statement “you did well for a girl” are offended. They say it’s a “compliment”.

  6. Wow. David Berreby’s projections are just so far from my experience. Like, the opposite.

    I worked many years as an attendant for the physically handicapped. It was a great thing for me for many reasons. One of the most important was the aspect of working as a team. My brain didn’t work as well as I’d have liked – depression, executive dysfunction – but my physical function was just fine, thank you. I worked for handicapped people whose minds generally worked quite well, but who couldn’t walk or eat or get dressed for work without someone giving them a hand. Together we had a blast. I loved the work, most of the time; it kept me going through tough times; it kept me in good physical condition.

    Now that I’m on meds that help my brain work more the way I want it to, I work in an office manipulating numbers on a computer. I’m physically out of shape, much more socially isolated, and often wonder whether what I’m doing is actually of any use. But I’m getting paid much, much more than I used to. I wouldn’t describe it as a blast though.

    The experience of the people I worked for was not that they were drains on society, but that they had an important function integrating the marginal. Their employees were students, gay, coke addicts, new immigrants, depressives, PLWAs and people with ADD. Sometimes many of the above. (At one point they considered hiring a man who had recenly completed a term for murder.) By employing these people, integrating them into their lives, they gave stability and contact to people who might have had trouble finding these things otherwise.

    My employers didn’t go out of their way to hire the marginal; not at all. They would often have preferred to have employees who required less management. But the people who apply for this kind of low-paid work are not people who have easy access to better paid work. So by default, giving stability and contact to the marginal became my employers’ contribution to society.

    I can’t speak for Carmen, but if I hadn’t worked as an attendant I might have been… lying in bed at home wondering how to get up and walk the dog. Working as an attendant took nothing away from me but gave me a great deal.

  7. “I went and read the original David Berreby post, and I really shouldn’t have. I should be used to it, but this is the kind of thing that makes me feel like someone’s slowly abrading away at my sense of self-worth with sandpaper. I have frequently had to struggle with guilt for receiving, not even assistance with daily living, but academic assistance from the university I’ve been attending. Because, after all, aren’t I merely eating up people’s resources and wasting their time? What good is it to expend the effort on me unless I can perform at the level of, say, Albert Einstein or Stephen Hawking? If I produce nothing of world-changing brilliance, what is the point of pouring the time and energy into me? Those are the questions I go at myself with when I’m in a very decompensated mood and finding it hard to stand myself.”
    I can relate. Three possible things can occur when I read something like that. Firstly, I might be able to reply in some manner and let it go (even if no one else reads the reply). This is the best thing. Secondly, I might get angry and start obsessing on it and be unable to let it go, possibly to the point of disrupting my sleep and certainly upsetting myself.
    Thirdly, I could react by feeling helpless and hopeless because I mentally rebel but can’t get clear to myself how to argue against it and my attempts feel futile, sometimes because I’m questioning whether I really am a worthless excuse for a person. This last one I perceive as similar to the feeling you expressed (if it isn’t, let me know).

  8. Pingback: Along the Spectrum » Leading by Example

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