A newspaper article that one day shouldn’t be newsworthy.

Standard

Caregivers Help Disabled Man Lead Able Life is a news story about something that should become too common to be newsworthy.  It’s about a non-speaking, non-typing autistic man who’d been institutionalized most of his life, living in his own place.  I know a lot of people in that situation, some autistic and some not.  Yet people continue to insist that there’s a kind of “Those People” who are in institutions and “have to” be there, and then another kind who don’t.

I’ve written in several places before that some of the reasons I ended up in institutions to begin with had to do with what I’d begun to realize about the world, which was that this was where adults who shared significant things in common with me tended to live.  I’ve read about other people having the same reaction, leading them to be locked up as well.  The more people perpetuate the idea that “some people” belong in institutions, the longer this will keep happening to every generation of children who can see no other future for themselves.  The more people of all kinds live outside of institutions, the more people will see that there’s nothing necessary about institutions.

The moment you create a kind of person that institutions have to be there for, you are creating an artificial “need” for institutions where there was none before.  The more people’s lives prove this wrong, the more examples there will be of why these places simply are not necessary for anyone.  Everyone who perpetuates the idea that “some people” belong in institutions is partly responsible for the continuance of people being institutionalized.

This is not to say that the outside world is perfect as it is.  A lot needs to be changed.  There have to be real alternatives to institutions, for everyone.  But someone getting out shouldn’t depend on whether, as in the man in the article, people see something interesting about the way he looks.  People should all have the chance to get out (and move somewhere better, and be able to retain friendships they formed in institutions, and all the other things that people are always overlooking when they close institutions — this is not an either/or situation).
I look forward to the day when all of this is history, and there is nothing extraordinary in disabled people, including those currently identified as the most severely disabled, living outside of institutions.  But in order to move towards that, people have to stop assuming that there’s some class of people who’s “better off” there automatically.

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.

29 responses »

  1. Do you think that people in his situation (non-speaking and non-typing) should be taught some form of self-expression just in case they weren’t as “contented” and “mellow” inside as they seem to the people commenting in the story, and just in case they wanted to say something other than point to stuff?

    If typing is too overwhelming for him after a life without academics, maybe he could learn sign language? Or even communicate by drawing…

    I’m not saying everyone should have to communicate if they didn’t want to, of course. But from what you have said, often a person who has been institutionalized doesn’t know their options: so what should outsiders do in terms of letting them have a way to communicate, if they do want to? I would think most would want to…

  2. PS: Please excuse the tangent. I did not mean in any way to detract from your original idea, which is a good one and unfortunately is still revolutionary.

  3. Yeah, absolutely, because they can’t really know if there’s more he wants to communicate or not. But I’m glad they didn’t wait until they figured out whether he could learn to type or not in the future, to help him get out of there in the present.

  4. Oh definitely. But they act like they’re done, now he has a place of his own. And that’s big, but it’s not the end of making a life for himself, if there’s more he wants to do.

    And why the *&^%$#@ is it permissible to take people’s teeth out?! (I am assuming that was for self-biting, from other things I have read, here and maybe elsewhere) … is it also allowed to remove feet if people wander too much? Eyes if they stare? Sorry, I think it’s not appropriate to say these things, but I find it really creepy to take out people’s teeth and say it in such a matter-of-fact way “they even took out all his teeth” as if that’s just something that happens in institutions and so there it is.

    Sorry, I know these things are old to you and your other readers but to me it’s still new and strange.

    Sorry, this was another tangent.

  5. That’s … unspeakable. Nazistic(*). If people did that to animals for convenience, they would be fined, at least.

    (* I have been avoiding that word all day, it’s not a word to take lightly.)

  6. And I know, a lot of other Nazistic things are done in those places, that are equally or more horrifying. I guess it was just the matter-of-factness of that one that shocked me.

  7. I’d say there is some real need for institutions, e.g. for orphans. Other than that, institutions are largely an invention of affluent societies. In the third world, only the very rich are able to send away their relatives to institutions. Everybody else finds a way to manage, even in cases that might be thought of as extremely inconvenient. That’s ironic considering that it is the poor who are supposed to be suffering more hardship already.

  8. The institutions I’ve been in have had the large “patient tackling, restraining and drugging areas”, the little tiny rooms, often shared with one other or completely isolated on some higher floor of the neuropsychiatry or special (insert famous founder or org name here) hospital. The same green peas (when someone has the whirled peas bumper sticker, I imagine all those green peas going down the drain at the washing areas where patients were sometimes pulling shifts heavily supervised). There is of course no “belts” or “sharp objects” etc etc allowed. ie: even pens. Everything is crayons. Crayons are interesting…they make they pretty pictures for the visitors so the visitors can say “oh that’s so nice, they must treat them very well here”. Albeit my stay was quite short, my sisters have had much longer ones and I’ve been threatened with longer stays. I remember your guide that you wrote for me and I still keep it linked in my own journal. I do think a rest home or little community with extra services are nice…some of the independant living centers are shabby but at least they have a good set of services even if they are in bad parts of town here. The factory working stuff and some of the centers in Taiwan had the typical “pottery center” and while it was an institution, it seemed more humane and less “western drug” happy. Autistics however were rocking/masturbating without abandon in front of visitors and visitors might murmur about all kinds of bizarreness but it didn’t bother anyone. lol. sometimes, there are truly funny memories there but I’d never want to be tackled on my stomache and drugged ever again. I can’t imagine the lives of some who have years in there but I wish like you do that so many who don’t need that kind of supervision (I would guess 80% to 95%) are able to at least have a community if not being able to live out an unsegregated and have off site supports and visits like is sometimes found in other more modern healthcare serviced parts of the world.

  9. People remove cats’ claws if they scratch the couch too much or whatever. I have yet to meet a declawed cat who was psychologically healthy. I remember one declawed cat who’d come up and rub up against me and act friendly, then bat and me and bite if I petted him.
    Reminds me of how my sexually abused cousin will flirt with people then panic if they respond. I wonder if those two behavior patterns are related?

  10. I think a simple daily visit by a person I could choose from a list would be a nice way to arrange visiting services. I know a few who have this. Many of those older than myself get this kind of thing for congestive heart/nursing/oxygin etc etc but there’s not that much out there available for those like us or those who are autistic and may need some kind of service. ie: food delivered, something high up reached for, talking to someone for us, helping us with executive dysfunctional types of issues. ie: helping us get started on things we may want to do for work etc.

  11. Teeth are and have been a sign of status since the invention of dentistry.

    Heretofore a toothy grin was the sign of the idiot, for who but a fool (cinematic reference there) would lack the social grace to keep there mouth full of rotten teeth shut.

    My teeth are hardly straight and hardly perly white, which more than anything accounts for the fact of why I am not beaming at you from the cinema and TV screens, notwitstanding I forgot to put a hundred down and buy a car.

    What is an institution anyway? but that which is instigated by statute, a product of a particular period in history, when curiosly enough those self help groups of the working classes seeking to band together for education and conviviality would build those working mens institutes that stands for a different value system (or does it?)

    Four walls does not an institution make, it is a set of attitudes, one can be as soundly abused in ones own home as in an institution if the power structure is there that allows it.

  12. I’d say that the power structure that creates that is still an institution. But the ones made for us with large buildings etc. always turn out to be institutional in nature, whereas our homes have a better chance of not turning out that way, although I’ve certainly seen places that were. That’s why I said it has to be replaced by something better.

  13. Perhaps the ultimate institution is the army, look at abu gharaib.

    The Army was the institution that educated my dad, and I guess he took the attitudes into home life, your own personal drill sergeant.

    Larry

  14. Communication is a right. Everybody has something to say. I have worked with non speaking people and I saw first hand how they were treated like children by some staff, though not all. There were some staff who were in my opinion totally respectful of the clients, and others, mostly older people, who were extremely patronizing. The place I worked in focussed on Blissymbols which is more than just pointing at pictures. Bliss is a language with an infinite variety of symbols which form complete sentences and has symbols for subjects often ignored with regards to people with disabilities, symbols for love and sex etc.

    A lot of people who have never met people with major disabilities suggestd teaching sign language for people who cannot voice words, however, so many people with CP cannot control their hands sufficently to point at pictures let alone make complex signs. But they still need to speak. I met people who used eye pointing to speak which is very hard for others to follow unless they know the person really well. I was hopeless at speaking with eye pointers, I could not pinpoint their gaze, mostly it was caring family members who would translate for them.

    As for the other subject of institutions I have personally spent time in hospital for a physical illness when I was a child. This involved being in isolation which was hell. I spent close to three months completely alone in a room confined to a crib. Sensory deprivation really fucks a person up…I know that first hand. I know what it is like to be dying of thirst and finally getting to ask someone for a drink when they deigned to enter the room and then being told to wait because they were busy, as if I had not waited long enough. I know what it is like to piss in the bed because there was nowhere else to go and no one to ask for help and then being punished for making a mess. When I worked with the people mentioned above another staff asked me why I kept asking people if they were thirsty and could I get them a drink. I did not bother to explain.

    If we have to live in hell for a time the least we can do is not condemn others to hell.

  15. Corpsebride, wow – you just reminded me of The Diving Bell and the Butterfly (by a guy with Locked-In Syndrome, where he had to use eyepointing to type the whole book). That takes so much patience…

    You are right about sign needing a lot of manual dexterity. I remember trying to review even the fingerspelling alphabet with a friend who has fairly mild CP and even so there were some letters that were really hard for her to form. (She was practicing it to talk to some deaf people we were going to meet). And my father, just with having large and unflexible hands, had an even worse time than her!

  16. Larry, the (American) soldiers with whom I corespond on the ‘Net, at least, seem quite sensitive to concerns about disabled people. Maybe it’s because so many have been disabled themselves lately in Iraq, or maybe it’s because American soldiers are, in general, decent, compassionate people.

  17. The army though is a total institution in every sence that Goffman used the word.

    The harsh boot camp regime as depicted in Full Metal Jacket was designed to break the individuals spirit and the endless drill and bull was designed to fashion the soldier into a fighting machine without time to think.

    Bullying however tends to beget bullying. I am not saying that my dads time in the army was entirely negative, as even at the end of the second world war an educated soldier was more effective, and the army did complete the education my dad had not recieved by leaving school at age 12. He also respected the Arabs by being posted in Egypt, the Sudan and Palestine, there is not a lot of respecting of Arabs seen in the US army today.

  18. I was irritated by the very title of the article — “caregivers help” suggests some kind of savior action going on, like those “giving” care are so kind as to have rescued the poor dear. I understand that kinda nit-picking is like comparing an “exclusive” counrty club to a lynching, but it still irks me. That is all.

  19. People remove cats’ claws if they scratch the couch too much or whatever. I have yet to meet a declawed cat who was psychologically healthy. I remember one declawed cat who’d come up and rub up against me and act friendly, then bat and me and bite if I petted him.

    Ettina: I’ve met many declawed cats who also do the same thing or similar. If you got your hand anywhere near them, they’d bite.

    As a side-note, it’s interesting that several of the people I’ve talked to about declawing would try to use the moral high ground of talking about how they adopted the cat and saved him/her from an infinitely worse life, and how it somehow follows from there that they can do anything they want to the cat. (Or use the false dichotomy: “Which would be worse, being declawed or starving to death on the street?”, as if those are the only two options.)

  20. “actually that’s part of the problem, is people see this all as a charity-like act instead of just what should be going on.”

    THIS is what my mind was trying to get at when I was harping on matter-of-fact-ness, but I couldn’t get straight at the idea.

    The good stuff should be matter-of-fact and the bad stuff should be the surprise, in the rare times it happens (not in the rare times it’s reported, while still happening a lot)…

    When will we see that kind of world?!

  21. thanks for this story, yes it shouldn’t be newsworthy that someone gets a life.
    re the teeth, I know too many people in residential care, formerly in giant longstay hospitals aka bins, who had all their teeth pulled to reduce their nuisance value
    – a high proportion of those who came out of the two bins I know most about had this done.
    It has been suggested to me that it may sometimes have been a result of rotten teeth from years of sticky liquid meds last thing at night plus no tooth care, but is thought usually to have been along the declawing lines mentioned.

  22. RE teeth: don’t forget meds. A lot of meds reduce saliva flow, which in turn reduces the mouth’s ability to keep itself clean. Many of the *non* institutionalised people I know on meds have tooth problems; one woman I know had all her teeth pulled and had new ones screwed into her jaw.

    My chihuahua has tooth problems because, like many small dogs, he has a dry mouth. Every time I take him to the vet he gets more teeth pulled. I give him big crunchy biscuits to eat, so his molars (which he uses to crunch his biscuits) are actually in pretty good shape; it’s his front teeth that he’s losing. If I brushed his teeth twice a day I could spare his front teeth longer, but it’s a drag and he hates it so I don’t. Besides, from my perspective he probably doesn’t need his front teeth for much besides holding his tongue inside his mouth: wild dogs use them for shredding meat and catching fleas, neither of which are an issue for my coddled housepet. And I think he’s cute when his tongue sticks out.

    Not being familiar with bins, and (as mentioned earlier) being determined to see everything in a positive light, I imagine that the practice of teeth-pulling has multiple origins. For instance, if you are staff at an institution you may take it for granted that all the residents are going to lose their teeth anyway… so why go through all the bother of keeping them. Why not just pull them all at the first sign of trouble, and avoid the hassle and pain and distress of toothache and tooth-sensitivity and drilling and cavity-filling. And if a toothless resident is easier to manage behaviourally as well, so much the better.

    Another way of putting it would be that staff see maintaining resident’s teeth as more hassle than it’s worth, so they project and imagine that residents see it the same way. (Or imagine that if residents were more rational that they would see it the same way.)

    It takes more imagination for a staff member to give up their own perspective and remember that most people are subjectively very attached to their teeth and don’t want them removed, and that putting in the effort to preserve someone’s smile would probably be appreciated. Even a smile that’s more difficult to maintain. *Especially* a smile that’s more difficult to maintain.

    And not even callous, rationalising me asked the vet to pull all my dog’s teeth as prophylaxis!

  23. Teeth to recap (oh dear that was not intended)

    It comes down to the normalising dialogue and there are no easy ansers, on the one hand a lack of cosmetic dentistry is a class thing, and the ultimate underclass to be denied are those in institutions. On the other hand a straight and clean set of teeth are valued because they show that money has been spent but an egalitarian discourse should say that what does that matter so long as the teeth funtion well enough.

    To some extent where dentistry is a luxury it is an inequality when it is denied to those who it is assumed cannot benefit from the social value of it so I don’t know.

  24. I didn’t get any dental care in institutions. When my parents asked, they were told essentially, and directly, “What does it matter if she gets dental care, she’s one of Those People.” I didn’t get teeth yanked, but I didn’t get them worked on (for functional stuff even) either.

  25. About the declawed cat analogy:

    I have met declawed cats. They don’t seem quite happy. And that argument about drapes? Get cheaper drapes and replace them more often, or don’t have a cat in the first place. And how are you going to deal with the unpredictability and messiness of a child, if you’re planning on having one, if you can’t even deal with a cat with claws and still choose to have a cat? Sheesh.

    I have met one cat that was born without claws. He was happy. And in a household that wouldn’t dream of declawing him had he come with claws. And they let their children (and then their visiting grandchildren) be noisy, messy, wonderful children. :) That’s how it should be, if you’re going to keep a cat, or have a child.

    (And all my kids go to the dentist and have as much done as they and the dentist together can handle each visit, and we have a plan in place to deal with problems beyond the scope of this particular dentist, for anyone in the family.)

  26. One of the reasons that declawed cats are usually unhappy is that declawing isn’t just removing the claws, it involves removing the first joint of each toe (that the claw is attached to). So, basically, as soon as they come out from the surgery, they’re being asked to walk around, paw in the litter box, etc, on unhealed, partially amputated toes. (There’s also a very high risk of complications, which most vets don’t talk about, because the surgery plus treating additional complications are very lucrative.)

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