I appreciate you and what you are. You have an in depth understanding of these issues and I always take you seriously. You are correct to point out that many disabled people have difficulty making the best choices for themselves, this is true of any group of people who have been oppressed by the medical and social services professions. They often feel they are not capable of self determination, and they may falter at times.
I am not saying that all disabled people are saints any more than I am saying all workers are incompetent. The working relationship between a disabled person and an attendant is highly difficult one to manage properly. It is not a matter of the capitalist boss and the hired worker, it is more personal and between two oppressed peoples. It is theetically a working relationship where both parties are interdependent and should be able to find a satisfying middle when issues arise.
I think that disabled people need training as well as to h ow to be effective in handling their needs and their attendants and just in their decision making process. It would be equally difficult for you to work for someone who was unreasonable as for a disabled person to be stuck with an attendant where the working relationship was not satisfactory.
What I don't understand about some people insistence on the disabled person not being able to dismiss a worker, is why would that worker want to remain working for someone where the situation was not working out? Why would they want to fight to be put back in that work environment? Why would a worker want to continue to work for someone they did not like or did not feel treated them right? On my list serves there is a constant need for attendants so it seems that no worker needs to get locked into a job with someone they do not particularly like. They can get another job with someone else. Both parties have a choice in the matter as it is now.
And no one has spoken about what happens to the disabled person whose worker does not show up? Where is the power in that equation? The disabled person sits in bed or wherever for hous on end trying to find someone to come help them, there is no grievance process for them to make that worker get to the job as promised.
I always appreciate your comments and I think your examples do get to the HEART of and illuminate many issues.
Best, Marta
Doyle Saylor wrote:
> Hello everyone, and Marta,
>
> Look Marta, you are a fine voice for disabled rights. I speak from
> being a worker in attendant situations, and the fact I have been in a union,
> and gone through strikes. I feel strongly about those things, but you have
> a right to feel strongly about needing an independent life because the
> fucking system fucks disabled people worse than anyone else, and the
> discrimination is bad. I hope you understand that I get mad, but I care
> deeply about these issues because it is close to home both in terms of
> understanding what the movement has meant to me, but also the fact I worked
> in situations and have that perspective in it also. I am just speaking from
> my heart to you.
>
> Maybe Tom Lehman is right that if you were in the union in some advisory
> position, which might be set up easily enough you could directly affect the
> sorry assed union officials and others with backwards view points directly
> and learn with the seat of the pants experience that unions represent a
> variety of people, and it is what everybody contributes that makes it
> something. There are business unions who will fight you, just as there are
> republicans who will fight you. I don't doubt that unions can be a bulwark
> against the best interest of workers, but there are reformers aplenty too.
> And that is what you are. People like you and I make a difference when we
> have practical knowledge of how things work in the union, and can unite with
> progressive voices to make good changes. We don't have an organized left.
> We don't have the muscle to get rid of quickly backwards people, but it is
> really about how people like you who make a difference when you reach out.
>
> You write:
> Marta
> A quadriplegic who lives at home and has an attendant who comes daily
> to feed, dress, and help transfer them into their wheelchair cannot exist
> one
> day with the help of an attendant. The attendat leaving the job to strike
> would
> mean the quadriplegic would be completely stranded in their home. For how
> long
> one day, two days, a month??
>
> Doyle
> My wife daily deals with counselling people in that kind of situation. I
> will give you examples I know of. R is aphasic from a stroke, and has
> severe arthritis so he needs a power chair. He had a live in attendant his
> sister set up for him. He thought the attendant was a pile of shit, and
> said so every chance he could to everyone, and yet it took six months to get
> rid of the bastard. Because like many situations with a disabled person,
> the fucking patronizing attitude over-rides listening. It took my wife and
> six other staff working in various ways that fucking long to get it done,
> and R went to jail once in that period because of the fucking shit that came
> down. Sure he made himself known, but he didn't have the power to make
> himself heard, and without a network of people that started with my wife he
> couldn't have got rid of the fucking bastard who was assaulting him whenever
> everyone's back was turned. And his sister meant well, but you can't toss
> her out, because he fucking loves her, and she is all he has in the world.
>
> Doyle
> Another example, a guy who falls off his roof and breaks his neck and is
> high quad. He has severe depression because of adjusting to being a quad.
> My wife tries to get him to fight for his rights, because you gotta talk up
> for your self, or they will throw you away like a refuse, but the disability
> causes toxins that give him paranoia. Sometimes he can't figure things out,
> and others he is so depressed he can't act. Where is his voice for
> independence? In that case every fucking person who works around him in one
> of these VA type outlets is treating him like a sack of shit. I know it, my
> wife knows it, but he is too scared to act in his own right. His fear keeps
> him quiet. That is why they (business interests) can shape things, because
> little people become afraid to speak up for their rights. They take the
> little they are handed, and that is what they accomodate themselves to.
>
> Doyle
> Another example, a guy with extreme add, totally able to work, but he can't
> cognate strategies that would get him out of trouble. He gets tossed from
> one job to another because the fucking system doesn't give access to his
> disability. The union he belonged to had a sorry untrained steward who sat
> on their thumb until the last fucking moment on the grievances, and he lost
> his job. But he presents himself as full of rage. What can he do to fight
> for his independent rights. He needs a network of support or he will get
> fucked royally. Well nothing is solved. My wife counsels him with no
> resources to give him what he needs. He is a fighter, but his strategies
> are shaped by his add. And ninety nine out of hundred people don't even
> credit add as real.
>
> Doyle
> Everyone of these people is saying they need their rights. It cries out
> with injustice and I know how fucking shitty these things are. I have a
> good friend. A higher function quad. She believes like you that firing
> people is the answer. Right, having a little token power feels like you
> have a control. And surely these are real life and death stuff. She
> doesn't have to worry about someone turning her to prevent bed-sores, but
> she needs transfers to go the bathroom in all kinds of strange places due to
> her job of finding housing for disabled people getting out of board and care
> homes. And just using the bathroom is a life and death thing, because it
> can become a health issue for her much more than most people. My friend is
> a savvy as you, but she fucking will hire me, and lecture me about her right
> to order me around like a slave. She knows what the fuck I think. But goes
> from caring to "boss" in her attitude because she thinks having that power
> is what liberates her. Listen if I didn't care, I could fuck with her and
> kill her just like the example you cite:
>
> Marta
> No but also, there is a very real issue of workers being flakes, not
> showing up on time or not showing up at all. The sheriff's department is
> looking for an attendant down here suspected of tying up a woman with
> cerebral
> palsy and killing her. We have to be able to get a dangerous person out of
> our
> homes with out asking the union if its OK. The union DOES NOTHING to screen
> its
> members, so they cannot be looked upon to solve the problem.
>
> Doyle
> But I don't because I need her friendship, I need to be paid, I need a
> decent society to live in, and I live in the world just like she does. I am
> just an imperfect human being trying to get by in the world. I do this kind
> of work because mostly that is all I can get. Sometimes like this very
> moment I am doing well, and I don't have to take any job. But I ain't above
> nothing. A union ain't heaven to solve my problems, but it represents some
> kind of structure to work on my social problems. When unions were strong in
> this country compared to now, we had social service rights that have been
> taken away since they crushed the right to strike. The union movement is
> composed of assholes, and good people, because society is composed of that.
> As sharp as you are, where are you going to be if people like Doyle aren't
> in your corner? Your right to fire somebody at will is just an ideal
> without a society that respects you. I talked to somebody you know last
> night, (Bill B.) He said without naming you, because this ain't about you,
> he thinks it is the peculiar American ethic that we have to be "independent"
> that shapes this sort of disability rights thinking. He says in Europe,
> there is a different take on things. Something like self determining.
> Where you function in a network of society and have rights in that
> situation. Instead of the individual against the world. I see you as very
> important. You are ten times more useful than most advocates because of a
> fighting spirit and the knowledge you have. But it ain't about having no
> strike clauses that guarantees your rights, it is about having a workers
> rights movement that is shaped by the knowledge that social justice demands.
> I appreciate the words very much from Yoshie, and Tom Lehman. I get so mad
> and impassioned I don't always make sense. I hope you hear my respect for
> you.
> regards,
> Doyle