Yoshie,
this may put me over the limit, but what the heck?
Yoshie Furuhashi wrote:
> Isn't this question of power differential a bit more complicated, when you
> factor in class, race, gender, etc.? Aren't homecare workers mainly people
> of color, some of whom are recent immigrants? Don't they tend to be women?
Yes, and many of them are excellent care givers. But unfortunately the pool of workers that is available who will work for such low wages also tend to be people who can't get work doing anything else. There are ironically many homecare workers who are disabled alcoholics, the pool of workers is very low, they tend to get hired because of limited choices of providers and this work is like a last recourse for them. Which doesn't necessarily mean that is always a negative thing, but you can imagine that it would present some problems.
> What of disabled persons who are wealthy enough to hire homecare workers
> privately (unlike those who cannot do so without the government paying the
> wages)? Do they really always possess less power than homecare workers?
Those wealthy enough to hire their own providers don't go through the IHSS program and hence are not the workers being unionized in this state. Of course, the wealthy have more power over the poorer worker, but to be on IHSS you have to have less than $2,000 in assets although you can have a home and a car.
> Aren't many of the problems that Marta points out rooted in the fact that
> homecare workers are low-wage workers, whose work is low status and whose
> training is scanty and not standardized? Wouldn't disabled persons be able
> to expect better service if homecare workers were paid better, trained
> better, given a light workload, and regarded as highly skilled workers?
Theoretically yes. but read this message from a friend of mine who is a Harvard graduate who recently spent time with trained professionals in a hospital: ******************************************************************* Dear friends, colleagues, sisters, brothers, etc.: Hope you folks can help me. I spent the week between Christmas and New Year's at St. John's Hospital in Santa Monica, with bronchitis. Feeling (mostly) better now, but the bigotry, negligence, and all-around mistreatment I received from hospital staff was nothing short of traumatic, terrifying, insulting, and dangerous.
I've read other anecdotal evidence about how badly people with disabilities are treated in health-care institutions, and wish to add my testimony to theirs. It seems to me that though this is related to nursing-home issues, it is a somewhat separate cause in itself. Anybody know of a group that's advocating for crip rights in hospitals and other medical settings?
What I'm talking about is nurses', respiratory and physical therapists', and doctors' not listening to me, disregarding my needs and wishes. I truly believe if I were not a fairly competent self-advocate--and if I hadn't had my wife backing me up and witnessing what was going on--they might well have killed me.
For instance, the staff kept propping me up in bed because "respiratory patients need to be upright to breathe better" even after I argued that I have scoliosis and when I sit up my lungs compress. "Leave the bed down," I insisted over and over. "Let me be flat or I can't breathe!" Many actually ignored me and refused.
When my IV came loose and blood seeped onto the sheets (noticed by my wife, not the nurse), another nurse reattached it by wrapping tape around my hand over and over. Only a little while later did I realize she had taped my fingers, effectively immobilizing the one part of my body I can move by myself.
And what about the nurse who kept complaining, "I'm spending too much time with you; I'm very busy"--but then took time out to speak to my wife privately just to confirm, "You're really his wife? That little girl is really his daughter? And you're really pregnant again by him? He can do that? You mean he really does feel when I stick him with the needle?"
Scariest of all, I had to click my teeth, spit, and push with my tongue to keep them from putting a positive-pressure oxygen mask (a "Bi-Pap" machine) over my mouth and nose; the pressure was too strong for my limited lung capacity, and I'm sure it would have asphyxiated me. But even when they turned the pressure down, I yelled as best I could (between short, gasping breaths), "I can't talk with the mask on my mouth." The therapist answered, "You're not supposed to talk. You're supposed to breathe." I pointed out that I cannot move my body and I have to be able to talk or else I would be completely stuck. Finally he found a nose mask--a great relief, although he attached it so tightly despite my protest that I still have a bad bruise on my nose, more than a week later.
Let's not even talk about the laughably useless physical-therapy department!
The examples go on and on. None of this was a great surprise to me; I haven't been a patient in a hospital in some 20 years or more, but I remembered what it was like from childhood. I'm used to the prejudice of medical professionals (and others), of course, but this was especially scary and dangerous because these people--whom some might foolishly assume are "experts" that know better--can hold the power over life and death.
Yesterday, jazz pianist and composer Michel Petrucciani died at the age of 36 while being treated for a respiratory infection at Beth Israel Hospital in New York; he had dwarfism and brittle bones. While I don't know exactly his situation, I'm 36 (and, in fact, was born at Beth Israel Hospital), and I'm glad I was able to avoid his fate. I've advocated for greater awareness, sensitivity, fair treatment, whatever you call it, from educators, store clerks, cab and bus drivers, etc.; how much more important it seems to advocate for crip rights in hospitals. Something has got to be done, and any suggestions you folks have would be warmly appreciated. Best, Ben Mattlin ********************************************************************
Nursing homes supposedly took the skilled worker route - training the aides, somewhat higher pay - and the abuse towards nursing homes residents has been all over the press in recent years. It has been the subject of congressional investigations. Of course nursing homes are corporations and they will cut corners, but not all the abuse can be pinned on that.I think you have to look at the deteriorization of society as a factor in all this. We just seem to inhabit a world where more people feel free to abuse other people and feel little compassion for anyone else.
> It's a miracle if workers who are paid only five or six dollars per hour
> don't feel like stealing occasionally. (Workplace theft is very common
> everywhere.) Besides, are those accusations of theft always founded upon
> truth? All employers of personal servants, whether they are disabled or
> not, seem fond of making such accusations. Servants are always suspected of
> some wrongdoings.
Yes in some instances I'm sure that people are wrongly accused but certainly not always. People who cannot move their arms or walk are much easier targets for those who do steal, would you not say? When I hear of these things from people who have experienced theft I am always saddened because at stated above, to get on the IHSS program you must have next to no assets. Many of these people have lost everything they have by the time they get to the IHSS stage. And, equally sad, it is a case of the poor stealing from the poor.
I believe that prospective IHSS workers need training from disabled people themselves. I have heard it said often that too much training - learned training that doesn't always apply correctly to every client in all instances - can get in the way of a good working relationship. The skilled worker "thinks" they know what is best, but as disabled people know, they can become rigid in not being willing to deviate from this training when necessary. How can the system put the worker and the disabled person on equal standing that can best overcome these difficulties? (involving disabled people directly in sensitivity training perhaps)
Best, Marta