Like I’ve said, I went to a state-operated boarding school for cripples that I call the Sam Houston Institute of Technology (SHIT).
Here’s an amazing fact: SHIT still exists.
Here’s an even more amazing fact: There are still a whole bunch of places like it going strong all around the country. They're often called “developmental” centers or “training” centers. But these places are like fly paper for cripples. If we land there, we’re probably stuck there until we die.
Here’s an amazinger fact than that: Some people fight hard to keep those places open, to the point where it takes contentious lawsuits to shut them down.
And here’s the amazingest fact of all: The defenders of these places ALWAYS say they’re standing up for our freedom of choice. Cripples ought to be able to live forever without parole, if we so choose, in a place where you have about as much autonomy, privacy, creative stimuli and ability to take risks as you do in a hospital ward.
When I hear people make this “choice” defense, I find myself wishing hard that there was a nearby pit full of yak turds. Because I would grab them by the back of their suspenders and hurl them into it.
Choice and preference implies a menu of options. But if you force feed somebody nothing but boiled moose bladders for long enough, sooner or later they’ll learn to love boiled moose bladders. A key survival mechanism for the most powerless cripples is the ability to develop many acquired tastes.
And when you live in those “developmental” places long enough, it has a groundhog effect. If you venture out, it’s been so long since you’ve seen sunlight that even your own shadow spooks you and you dash back in and hide.
I could conduct a survey where I offer cripples a choice between a) being locked in a meat freezer for three days wearing only a Speedo or b) a kick in the crotch. Four out of five cripples will say they prefer a kick in the crotch. Hell, five out of five cripples will say they prefer a kick in the crotch. So then I’m not only justified but I’m sanctified when I go around kicking cripples in the crotch. I’m honoring their choice.
This happens not just to cripples but to powerless people in general. You get a choice between a) working at Walmart for shit pay and no benefits or b) starving to death in a cold alley. Four out of five will choose working at Walmart for shit pay and no benefits. Well, maybe three out of five. So we must defend their right to chose to work at Walmart for shit pay and no benefits.
When the champions of choice thrash wildly in the yak turds, pleading for me to throw them a rope, I will offer them a choice to a) stay in the pit or b) be flattened by a steamroller. Four out of five will say they prefer to stay in the pit. And I will honor their choice.
Best post ever.
ReplyDeleteA tough choice to make but i tend to agree. I sent it out to our CIL staff this morning.
DeleteAny fans of "Blazing Saddles" out there? Y'know the part where sheriff Bart says "Ok, you got me. But tellin the plain truth is gettin pretty damn dull around here." That is NEVER the case with Mike
I agree with you that those places shouldn't have to exist in the first place. However, when properly funded (which admittedly is never), they do do some good.
ReplyDeleteHehe, I said do do.
Raul Carranza
www.raulcarranza.org
Raul, so you are talking in theoreticals, then? or is this just some do do dream you are having? The only time I've ever seen them do good was when the alternative was rotting away in an alley. Which, is sorta Mike's point.
ReplyDeleteDoesn't everybody love a smart ass? I know I do.
ReplyDeleteyou are spectacular!, why didn't I ever hear about you sooner!, you deserve wide distribution and support.
ReplyDeleteYou are indeed brilliant...but I still think someone above me there is going to try to sell you something.
ReplyDeleteCompletely enjoyed the post, completely agreed with the post....
ReplyDeleteGet this published somewhere. It's brilliant.
ReplyDeleteOpponents of the internet Do Not Track movement argue the same thing. Restricting their ability to track browser users denies the consumer the right to choose between being followed around at all times and a smack in the back of the head or some such thing. Funny how that works.
ReplyDeletehi, smartass. can i call you that? i feel (perhaps improperly)that i've come to know you somewhat through your writing.
ReplyDeletei want to say thank you. thank you because you talk about unfunny shit in a funny way because if we don't see what's funny we'd go crazy.
i'm not your brand of cripple, but today i can't get off the sofa and i don't feel i have any choices that aren't bad choices.
i don;t think i have anything clever to add to the conversation except that i read what you write, and it helps.
so thanks.
I spend so much time indoors, I've become transparent: No shadow to frighten me! I just sit here and read Smartass blog entries. I guess what I'm getting at is you should stop writing all this stuff and let me get outside.
ReplyDeleteThat is all.
Dear Smart Ass,
ReplyDeleteJust because you are hilariously funny does not mean that you can't be wrong.
I have two adult sons who function at the level of 6 - 12 month-old infants both physically and mentally. Some people are offended by any implication that people with disabilities may not be able to make decisions for themselves, so I don't know how many people I am offending here by calling my sons low functioning and profoundly intellectually disabled, but I don't know how to get around it. At times I think that it is my sons' condition that people find offensive. Could that be because they make higher functioning people look bad by interfering with the narrative that everyone can live at home, work in integrated employment, and do everything that everyone else can?
My sons live in a group home that I'm sure you would rightly find prison-like for yourself, but for them it is a reasonable solution to providing them with the care they need and a life that is meaningful to them. You will have to take my word for this, because they don't communicate in any specific way. My husband and I have known them long enough to know what makes them happy and what does not.
I also know people who depend on the larger facilities who feel just as strongly about the need for the level of care provided there for their sons and daughters, who have disabilities that are even more complex and severe than my own children. As for contentious lawsuits, take a look at Arkansas vs. DOJ, where the U.S. Department of Justice spent years trying to prove that a facility in Arkansas violated the rights of its residents by failing to integrate them into the community. Read the decision to dismiss the case to see what a bungled mess the DOJ made of it. It cost the state over $4 million to defend itself, money that could have been spent on getting people off of waiting lists who were already in the community, rather that trying to force people out of facilities.
To have a serious discussion about this issue, you might have to step back, at least temporarily, from your assumption that we are no-good, gullible fools that should be thrown into a pit. Don't you find it a bit arrogant when other people make judgements about you who know nothing about you personally and have never met you?
As for people with disabilities being pushed into jobs most of us would not want, I know that for some full-inclusion advocates, the go-to occupation for someone with a severe disability is to be a greeter at Walmart. This is about as meaningful to most people as being employed as a Walmart doorstop, but for the people who like that job and find pleasure in it, no one should take that choice away from them.
Here is what I find offensive: the full-inclusion advocates where I live are so fanatical about community integration that they are constantly trying to limit activities that bring people with severe disabilities together, as if the the worst thing that could happen to them is that they would have to associate with people like themselves. Now that's discrimination!
Oh Jill,
DeleteI am hearing you, and as a Disability Care worker (in Australia) I know exactly what you are talking about. I care for a group of severely intellectually disabled adults (many with severe physical handicaps also) who live in group housing in the community since our government decided it was against their basic human rights to house them in institutions.
For the most part I agree with that , although we do have several clients for whom live in the community is no picnic either, they are loud, aggressive & often violent and cause fear and angst in their neighbourhood , sometimes from ignorance but more and more lately from experience (some have assaulted members of their community).
While the idea of community integration is good for some our governments need to be careful that they are not using a "one size fits all" approach as they seem to be determined to do. This is not good for any of the people involved, the clients, their families or the carers. Simply because these people ALL have an intellectual disability does not make them ALL the same.
So for some of our disabled a community home can provide them with a live vastly improved on what they received in the institutions, for others it is a minefield of terrifying experiences...'forced' community integration with an expectation that they will 'behave' in a certain manner (not always possible for them). For many of our intellectually disabled , familiarity is very important. It is the cornerstone of their lives, something that keeps them emotionally comfortable and anxiety free, so why, as a society as we determined to force them out of their comfort zones and into what we consider to be a 'good life'.
My opinion is that we should encourage the intellectually disabled to achieve all that can but only if they want to , they should not be forced into community groups/activities/living and a situation that makes them anxious simply so some government policy maker can look good, sit back with a 'warm glow'and claim the kudos for having made their lives more 'meaningful'. After all , meaningful is a term that is open to interpretation depending on your perspective.
Jill, to you and your sons I send the best wishes and hope your sons are happy in the care they receive
Having worked in such a place, and having observed folks with profound intellectual disabilities whom I got to know quite well in both institutional and ordinary integrated settings, I can tell you that people with the most severe intellectual disabilities imaginable:
ReplyDelete1. Pay more attention to their surroundings
2. Don't do as many strange or objectionable behaviors
3. Appear to be happier
in real integrated settings.
This even applies to people who are in comas or have very little brain matter at all. It ESPECIALLY applies to people who have significant behavioral issues--because being massed together with other people who have similar issues, and surrounded by staff people who annoy them, makes such people behave even more badly.
So it comes down to a matter of convenience. Because it's much harder to maintain a person with really significant intellectual disabilities with proper supports in real integrated settings than it is to cookie-cutter warehouse them, whether in small or large groups.
Here's the choice:
If your kid could talk, what--and think really hard now--what would HE say? Where would HE REALLY rather be: a place that bores him to tears, or a place that interests and stimulates him?
Parents rarely ever put themselves in their children's shoes when it comes to making choices like this. They are unable to get out of the mindset that their own beliefs about what is "safe", and their own knowledge of what is convenient, matter more than their children's quality of life.
As for the US vs AR decision: The judge found that the definition of a "safe" developmental center is one that isn't any worse than the "average" developmental center in terms of how many people get injured or killed there, by accident or on purpose. That's right: if 20 "non-verbal" people get beaten to death by psycho attendants in Happy Acres DC in one year, but the average for "unexplained deaths" in all DCs in the USA is around 20 annually, then according to this judge, there's nothing to worry about at Happy Acres.
DCs in general have a mortality/morbidity rate much higher than that of group homes in general, whose mortality/morbidity rates are much higher than those of real homes, in general--even taking into account the significance of the disabilities of the people involved. (If you want to find out how "safe" developmental centers AND group homes are--no matter whether they are run by the state or private for-profit or not-for-profit agencies, have a look at the stories in the New York Times about New York's Office for People with Developmental Disabilities that appeared over the last year, Katherine Boo's series on group homes in Washington, DC that appeared in the Wahington Post in 1999, or any number of stories in between.)
Most people would say the standard for safety, against which all other settings should be compared, would be the lives lived by ordinary nondisabled people. If you as a parent can stand up and tell me you're okay applying the measure of safety chosen by that judge for your kid, that tells me all I need to know about what kind of parent you are right there.
I have two sons with profound developmental disabilities. I took care of them, one or the other of them or both at once, at home for 28 years. And, yes, it was hard and "inconvenient", as you put it. Not that it is any easier for their group home to take care of them - their demanding needs go with them no matter where they live.
ReplyDeleteIn Arkansas vs. DOJ, the issues were not murder and mayhem, but integration and whether the DOJ made charges that would hold up in a trial. The Judge was perplexed:
“Most lawsuits are brought by persons who believe their rights have been violated. Not this one . . . All or nearly all of those residents have parents or guardians who have the power to assert the legal rights of their children or wards. Those parents and guardians, so far as the record shows, oppose the claims of the United States. Thus, the United States [Department of Justice] is in the odd position of asserting that certain persons’ rights have been and are being violated while those persons – through their parents and guardians disagree.”
This was only one of the reasons the case was dismissed.
There is nothing I can say to someone who claims to know so much about my sons without even knowing their names. And yes, I worry about their safety. I worry even more about their future being determined by zealots who care more about an ideology than they do about my sons.
Another great post!
ReplyDeleteYou're quite right: a "choice" means deciding between two or more things. Having to decide between a bad thing and a worse thing is not a choice, it is a DILEMMA.
Another great post!
ReplyDeleteDeciding between two or more things is a choice.
But deciding between a bad thing and a worse thing is not a "choice", it is a *dilemma*! I hate it when people in authority claim they are giving me "choices" when they are really giving me dilemmas, grrr.
Guess you coulda told them this:
ReplyDeletehttp://www.disabilityscoop.com/2012/07/16/waste-duplication-disability/16021/
I work at WalMart, and starving in a cold alley sounds better every day.
ReplyDelete