The ones who don’t know they have rights.

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This post stems out of part of a long reply to someone in the comments section of my last post. She talked about the kind of environment where even reactions to pain are seen as bad behavior, and the way this shapes a person, to live in a place where the fight-flight response is constantly triggered, but there is no chance of fighting or fleeing. There are, certainly, psychiatric terms for all of this, but I’m not going to get into those in this post.

Often, people tell me that I am qualitatively different from other people with developmental disabilities. They tell me this on the basis that I understand many of my rights and stand up for them. I will admit this is a qualitative difference in a way from many (certainly not all) people who’ve been in the system, but it is not a static difference.

I want to describe what I was like immediately upon leaving institutions.

I did not know I had rights. At all.

When I say I did not know I had rights, you may be thinking of abstractions. I am thinking of something like, I did not know that I was allowed to think my own thoughts. When someone suggested that I repeat this to myself, I thought even thinking about it would lead to my death, because that is what I had been explicitly told.

I did not know that in my home I had a kitchen. I thought I had “kitchen privileges”. I thought every single aspect of life was a privilege that I did not deserve and that could and would be taken away at any time.

Every single aspect of my emotional and mental processes was bent in on itself, and mainly concerned with being an insignificant nobody as best I could. I was not good at this, and in fact at times my attempts to disappear made me more conspicuous. But I had been trained to be a non-person and I tried my best to comply. I did not have much thought or energy left for anything else.

It did not work, because most autistic people are naturally quite conspicuous. I could not avoid meltdowns. I thought that every single meltdown I had was going to land me beaten up or killed or tied down, but I could not stop them and this scared the crap out of me. Even more normal things scared the crap out of me, I was trying to be an impossibility, a real person cannot be a non-person, no matter how hard they try, and I was a real person.

That’s what psychiatry tends to forget, is however “damaged” a person may be by an experience, there’s a part that the damage cannot touch about them, even if they can’t see the part, even if all their conditioning tells them to not look at that part and that place, even if looking at that aspect of oneself creates terror and shutdown. Psychiatry refuses to look at that aspect of people either, or it would find far more resilience in everyone than it does.

I was a lot like a wild animal that has not been tamed but that has been caught in a cage and not allowed to move on its own for years. When the cage was lifted, I did not even have the capacity at that point to notice. I took the cage with me in my head. Which was just fine with any and all professionals in my life, that’s where they want the cage. They brag about letting people out, but so often it’s by creating cages in people’s minds.

I had a friend a couple years back with a cage in his head, and he’s still physically imprisoned as well. I don’t know if I’ll see him again, but I remember talking to him about this stuff, and he was astonished that I knew what he was thinking so often. He asked how I knew all this, and it was very simple: Cages don’t create a particularly varied response after a period of time.

I had to learn that I could think, that I could move freely, that I could use appliances in my own home, that I could eat three meals a day, that I could choose anything about anything. It was like a muscle atrophy (and I think I had some of that, too, from prolonged immobilization) only it was my head-muscle that wasn’t working too well.

Dave Hingsburger talked in a video called “The Ethics of Touch,” about providing services to people with severe disabilities, who had no formal communication system, and needed assistance with transferring from a wheelchair. He talked about how if everyone approached this in a respectful way, and lifted the person gently after explaining to her exactly what they were doing (which, he said even if she didn’t understand the words, she’d know something different was going on), then she would become “addicted to respectful treatment”. If someone tried to grab her and hoist her without permission after that, she’d stiffen up or arch her back or do something else to show resistance. He had seen this happen, people becoming “addicted to respectful treatment” within a matter of weeks.

Which is why I hate the idea that there is some innate capacity I have that others don’t. This capacity is actually possible in anybody. It doesn’t have to do with understanding too many abstractions. It has to do with a gut-level feel of what’s respectful and what’s not, what rights you have and what ones you don’t. It’s something that most people have, but they learn from their society so early which rights they have, that it’s invisible to most people.

The main thing unusual about me is I have had opportunities that a lot of people haven’t — contact with people who were outside the system enough to show me another way of thinking and living. Not that I don’t still at times get confused about what rights I have, but nothing like to the level of before.

This is why, though, I am so passionate in standing up for rights, because I know exactly what it’s like, not only not to have any, but not to know that they exist because not having any is so ingrained in your head that you can’t think of anything else. I have seen people justify violating people’s rights — in some pretty fundamental areas — by saying “They don’t know they have any rights, they’ve never had any, so it’s okay.” I find this practice despicable. And how on earth can a person learn they have rights if they are constantly treated as if they do not have them?

I can so easily see myself presented at some point as a classic example of a person who has too little conception of rights to bother with, or who is too “damaged beyond repair” to do anything with, I’ve heard both of those said about me many times in the past. These days, though, I’m “different” than that. Yeah I am, actually, but not in a way that can’t be learned.

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.

18 responses »

  1. Playing devil’s advocate here – or, perhaps more precisely, playing the devil – but this post brings to mind some of your earlier posts that touch on how folks presume that disabled people, when they express anything controversial – and I think you were referring specifically to autistic people in specific forums, but I take liberty to expand here – are either manipulating or being manipulated. This, of course, stems from projected prejudice on the part of people (a peck of pickled peppers) who see disabled people as neither having the right to speak with authority nor the capacity to think for themselves. Lately it seems I’m more acutely sensitive than usual to folks giving “advice” from a place of implied advantage. When you said that someone suggested you (I think you mentioned it in an earlier post, too, and I could be mistaken, but I think you used the phrase “made me”) repeat “I am allowed to think my own thoughts”, even that smacked of paternalism for me. For ME!! ; )

    I recall a discussion with a friend who was distressed over a conversation with his therapist (not *that* kind of therapist, but a speech therapist, so the dynamic is even odder, and I’m reminded again of how you can separate “therapist” into “the rapist”) in which the therapist had given him hell over a decision he’d made – a major life decision – and condemned the decision for being too impulsive, at a point in time where my friend couldn’t very well back out of it. From my friend’s description of the exchange, I got the impression that this therapist, despite the long-standing familiar relationship he had with my friend, thought himself particularly privileged, and that he somehow had an authoritative, paternalistic say in what kind of decision my friend was allowed to make. This irritated me, particularly because my friend was exceedingly upset by the exchange, at a time when he was already experiencing a good deal of stress. And he wasn’t upset for the “right” reasons, either; i.e. that somebody was telling him what to do with his life; he was upset because he was starting to doubt his decision – and it was a decision he’d have been perfectly happy with if nobody’d bothered him about it. And I told him, “You’re a grown man, and that guy has no right to make any decision on your behalf, or to judge a decision that’s solely yours to make,” or something to that effect. What I said was much longer than that; a rant, a tirade really; and I know it made my friend feel much better because it validated his decision and highly amused him – but as I was talking I got a creeping feeling of irony, maybe because I was so vehement – like I was saying, essentially, “You have the right to make your own decisions and think for yourself, and don’t ever let anybody tell you any different, BECAUSE I SAID SO.”

    Incidentally, I’d often noticed previously that there is kind of a weird hierarchy with my friend and his therapist. My friend often talks about his therapist from a place of admiration; the therapist as my friend puts it has his own speech pretty much “corrected”, whereas my friend . . . uhh . . . doesn’t. Which is damn fine as far as I’m concerned, but my friend still hasn’t quite become comfortable with the idea that there’s nothing “wrong” with him, despite my mad gesticulations and passionate insistence on behalf of “rights” and being enlightened, empowered, disabled and proud, etc. We’ve had extensive conversations on the implications of “cure” in which I contend that it’s not the disability but others’ perceptions that need to be “fixed”, and he’ll end up saying something like, “Yeah, but if there were a cure for this I’d still take it.” And I take up my rant again, and eventually end up feeling like I’m picking on him. That’s partially because he has a rather gentle personality, and my personality is . . . uhh . . . un-gentle. But I think it’s also because I recognize the irony of telling him “If you want to think for yourself, then THIS is the way you must think.”

    So yeah, lately I’ve been careful about spouting “advice”, especially as regards rights, because I don’t want to be manipulative to people who are already in the vulnerable state of “I have no rights” mode. Then again, I shouldn’t assume that anybody’s that frail either . . . and, of course, anybody has the “right” to just tell me to shut the hell up . . .

  2. I do not have as much institution experience as you to simply admit it…but my home was almost as much of one. My parents were stricter than most parents. Given my religious background…it was strict with regards to food. I had to finish my plate even if there were roaches writhing in my food. ie: in runny, hardly cooked fried eggs for example. I was not allowed a key to my own home. I was once whipped and kicked in the testicles (testicle as I have a reduced size one from cryptorchidism which I had surgery for at 8) for using the lock on my door. They broke it off and threatened to mortal danger (to kill) me. I was scared enough to almost hang myself by the cords of my window. (and it has happened to others I know. …I hope their souls rest in peace). I was not allowed to touch anything hardly. Not light switches, not air conditioners, not a single thing without corporeal punishment. Things I see kids do today in homes like hide in closets…I almost take them out in a kind of gut response thinking almost that if they get caught, they’ll get beaten by their dad when he gets home. Often, I hid under the tables. (and was beaten while hiding there)…ie: kicked, belt whipped, hanger whipped, stick (or ‘willa’ whipped…sounds corny now that I know how hick it sounds although it still doesn’t make me laugh too much…although I have been able to more recently). Anyhow, abuse can happen anywhere and strictness can too. Of course, when a person is drugged to the point they can’t defend well, dangers due to being unable to breathe (under body weight if face down) and such are prevalent. My gut feeling is that everyone has a right to be free of parental and peer abuse. Getting both…every single day as almost a routine has destroyed a part of me but I carry with me one lesson. I know that cruelty, in feeling or form is dangerous, wrong, evil etc. Simple as that. The standard rights seem more nebulous as I’ve never really had them. I’ve really never been all that free to speak and if I were, I’d have not much to say but I can blog.

  3. Excellent post Amanda,,
    and something that I have experienced also
    I would wish that we can eventually talk without misunderstandings if that is ok with you.

    Vicky

  4. Ok I think I am finally getting it !! smile. If you dont use your rights in the way that I think you should then therefore you are incapable of using your rights AND understanding them. If you continue NOT to use them the way its proper to do then of course you get diagnosed and labeled as “unable to reason or think” because logically if could think and reason you wouldnt do the stuff you are doing. So your rights have to be taken away until such a time that you can prove that you are a responsible citizen.
    Also the “addicted to respect” idea is something I have been thinking about. Which probably happens a good deal and why people get so heavily medicated and why agencies can’t get good staff. The “good staff” show respect and the “clients” respond by making taking initiative (notice I didnt say good behaviour) and then refuse to do the same for other staff. That creates resentment and the “good staff” soon find themselves out the door. Which is why when the next “good staff” show up no one is willing to even try to be independent. The risks and consequences are too great.
    Thanks so much for going into more detail. You dont know how encouraging you have been to me. After a rough day and feeling like I want to do some very inappropiate behavours your blog is the first thing I go to. It helps to know that someone out there made it through all the garbage. It also helps me to know how many times I have been part of that same destructive pattern and now at least I know what changes I need to make. THank you soo much !!

  5. ballastexistenz,

    I am what you would call a “neuro-typical” (wow, until I started researching autism I didn’t know there was yet, another label for me). Anyway, I am shocked to hear what you have had to go through! It makes me a bit naseous. I guess I shouldn’t be all that shocked, after all, in the 1980s I used to go to nursing homes with my father and provide musical entertainment. I saw a lot of horrible things happening there, so why wouldn’t worse things happen in institutions?! Further proof of just how sinful we are.

    The first thing that comes to mind, (although it probably isn’t appropriate), is where were your parents? Why did they allow this?
    My daughter, Edith, was diagosed last March with autism in the mild to medium range, ADHD – impulsive, PDD, and possibly bi-polarism, and I can tell you right now, even if she was more difficult to deal with than now, I still would NEVER agree to institutionalize her. I don’t care if staying with her caused me mental health problems! She is my child, a gift from God, and an enormous responsibility that I would never dare shove off on others.

    Not that it means anything, but I am sorry that you have had to go through what you have. I am thankful though that they weren’t able to crush your spirit and that you have come out of all of it a stronger person. I am happy that “you ain’t gonna take no more crap ever again!”

    I am bookmarking your site. It is good to hear from someone who has autism, to get their perspective. I have a lot to learn and you are a good place to start to learn from.

    Evonne,

    What’s with you? I know there can be bad therapists but the whole therpaist = the rapist crap is, well, crap. Are you trying to say that your friend should not get any help? Are you living under the delusion that your friend is fine and has been sent to therapy against his will by someone who wishes him harm?

    I could be wrong, but based on your comments you seem to have a lot of pent up anger about something and you are using your friend as a vehicle to vent from.

    If your friend is being abused, then that is one thing and I am with you, but if not….wtf?

    Lordalfredhenry,

    I am so sorry that you have been treated like that by parents that should have loved you as opposed to being under the care of such monsters. If anyone deserves being under the whim of Evonne’s “therapist = the rapist”, it would be them. I hope and pray that God is helping you get past all of that horrible nightmare and push on to bigger and better days.

  6. Clay: Regarding what you said to me, my parents had neither the particular education nor the experience to resist that kind of thing (nor were they told what was going on — they were told a totally different version of events), and they were even threatened that if they did not go along with this I’d be taken away from them entirely.

    Regarding what you said to Evonne, that’s a very common splitting of the word ‘therapist’ in some circles (particularly psych survivor ones) and Evonne didn’t make it up. It’s also used here by an ex-patient.

    It is way beyond a speech therapist’s duties to be questioning someone’s judgement in their life decisions. That’s an abuse of power and authority. Questioning this kind of thing in a speech therapist is not even out of the ordinary — speech therapists should not be providing other kinds of therapy.

    Questioning the judgement even of an ordinary therapist is also not a bad thing to do, particularly because of their role of power and authority in a person’s life. Not everyone believes that therapists have any special corner on human wisdom.

    Doing either of these things is not a sign of “having a lot of anger” (about something unrelated, of course), or of being “delusional”. (The whole idea of “having” anger is a very therapy-like construct in itself, and one that many people raised outside of a therapy culture find bizarre.)

  7. Yeah, what she said. Thanks.

    Also, the old oversimplistic and insulting “This thing happened to me, so now I believe/do X” trick, the stuff of fundraisers and pop psychology, is even uglier when it’s reversed. “You believe/do X, so this thing must have happened to you.” Boring. (Does my prose really sound angry? There’s a post somewhere on this blog about that — “I’m that monster you met on the Internet”?)

    And Clay — this: “I don’t care if staying with her caused me mental health problems! She is my child, a gift from God, and an enormous responsibility that I would never dare shove off on others.”

    My my, that’s right noble of you.

  8. ballastexistenz,

    I’m sorry to hear what your parents and mostly you have had to go through. As for therapists, your point is well taken. I agree that there are certainly a variety of them who abuse their power, and I have never felt particulrily comfortable with with psychology as a science, since it almost tends to categorize human beings into cookie cutter type images. It’s just that “the therapist = the rapist” sounded a bit over the top. I’m all for healthy skepiticsm, it’s just these days it almost becomes a fad to question everything just for the sake of questioning. Other than that I agree with your assessment.

  9. Clay, there’s a connection I noticed between your remarks to Amanda and your remarks to Evonne. You wondered why Amanda’s parents failed to protect her, and in the same post equated Evonne’s objecting to what she saw as manipulation on the part of her friend’s therapist with being against getting any help.

    This is part of how the abuses happen. Well-intentioned friends and relatives give the full benefit of the doubt to the therapists and other medical professionals. If you start with the assumption that the therapist is right except when he’s obviously wrong, then you can miss or excuse a lot. The signs of mistreatment aren’t always obvious to an outsider, especially if the person being abused isn’t likely to be understood or believed. Changes like not wanting to go to treatment, being much quieter than usual, being more upset than usual, and even increased obedience or apparently good behavior can result from abuse. They may not; they may be caused by any number of other factors. But therapists, as people with power over others don’t get a free pass out of scrutiny.

    You said you’ve seen a number of nursing homes, and would never institutionalize your child. A lot of parents don’t know what they’re getting into, and what they have to go by is a medical professional saying, “This is the best thing for your child. It’s the only way to help him. If you do this, he’ll get better. If you don’t he’ll get worse and worse and eventually run out into traffic, or swallow something dangerous, and die.” If they think the choice is between no help, and what the doctor says, they’ll obey. Because they see the choice as either going along with the doctor, or getting no help at all.

    I’m not against medical treatments or therapies in general. A good point I read somewhere is that some of the best “therapies” for autistics could more accurately be called teaching. But medical treatments have their place, and some very real benifits. What they don’t have is an exemption from criticism.

    A therapist who leaves the patient feeling stressed-out and insecure about their ability to make decisions deserves to have his actions questioned. If he’s really doing what’s best for the patient under the circumstances, and helping them see the negative consequences of their own bad judgement, then questioning will reveal that. If not, for instance if he’s a speech therapist who’s so enamored with his own influence over patients that he’s taken to pushing his personal view on others, and cutting them down emotionally when they disagree with him, then the best thing you could do for his patients is enourage them to get away.

  10. Evonne: To respond to your original comment…

    When I was getting out of the system myself, I was very fortunate to meet a few people who treated me with a combination of respect for my autonomy (and my right to disagree with them) and political understanding of the situation I was in. I imagine (and know, from having friends still in the system) it’s a difficult balance, but it was really worth it to me in the long run to be exposed to these ideas and at the same time not have them crammed down my throat.

  11. Yes, thanks, J; and thanks, Amanda. It is a difficult balance — especially when there is an element of fondness and friendship. I guess the ability to recognize that the balance sometimes tips is the best we can do; it was what I was hoping to do in recognizing the irony I talked about, and I’m pretty sure it’s good that I wasn’t oblivious to it. A bit more, and I’ll get off it:

    In response to Clay’s comment re: it becoming faddish to question everything, on that I’ll agree – save the “everything”. It still hasn’t become mainstream to question the idea of disability as pathological and pitiful. So yeah, when I see that idea coming, I’ll challenge it in whatever capacity I can muster.

    As for the word play involved in “the rapist”, I’m not married to it; I just found it an interesting slip of the fingers. (A bit silly to zero in on that alone and miss the point of the rest of the text; it was a parenthetical, for God’s sake!) And of course it’s been used before, quite powerfully. I gladly admit to over-the-toppishness as the resident “word person”, but I stand by the contention that relationships that create hierarchy are often ripe environments for abuse. And there are kinds of abuse that are perhaps even more harmful than those that come to mind at the mention of the word “rapist”. Getting all hyped up about sex implications is faddish as well.

    Also, for anyone tempted to miss the point on exploitation or paternalism: Fish around this blog for a bit and you’ll notice that when Amanda (or any conscientious poster) writes about exploitation and injustices done to her personally or peripherally, she’s not doing it simply so someone will say, “Oh, dear, that must be awful for you”; and when she writes a piece that involves profound intellectual thought, she’s not doing it so someone will say, “Wow, you’re a smart cookie”. While expressions of sympathy and affirmation of positive introspection are appreciated, she doesn’t respond to flattery in the manner that flatterers hope for. This blog is a crucial forum that really is eliciting social change. William Blake said, “When I tell any truth it is not for the sake of convincing those who do not know it, but for the sake of defending those who do.”

  12. J,

    I’m with you on your points. Regarding professionals being able to fool some parents, I am sure. I’m just lucky enough to be reticient to jump every time the doctor says how I? I’ve been doing some of my own research on autism and I am well aware that institutionalization for my daughter is not warranted. If I should hear that recommendation from a therapist in the future you can bet they will not be successful.

    Evonne, I agree with you, I’m not oppossed to your position. As I’ve said, there is a time to question. And, I obviously don’t side with doctors or therapists as a knee jerk response. I just misundersood the “tone” of your comments. I applaud you sticking up for your friend. Sounds like he/she is very lucky to have you for a friend.

    As for Amanda’s motives for posting things, I’m not sure if you are aiming that at me, if you are, then it is unfounded. I’m not passing out flattery just to be cordial. That is shallow and is not really very helpful. I am here “learning”.

  13. Evonne,

    “And Clay — this: “I don’t care if staying with her caused me mental health problems! She is my child, a gift from God, and an enormous responsibility that I would never dare shove off on others.”

    My my, that’s right noble of you.”

    There nothing noble about it. I am just an ordinary Dad who loves and wants the best for his child. Nothing more.

  14. I hope this information could be useful,and if anyone could help shed light I would be greatful .

    I’am a victim of psychiatric abuse its a crime, and in hospital I have witnessed the twisted mentality of mental health professionals such as abuse like punishing me with force drugging of antipsychotics , chemical restraints ,isolation for days at a time with in appropriate meals, and nursing staff threating me with anything they thought of and it just depends on how mad you got the staff that day. I never did anything out of control or did I get violent,yet I was just standing up for patients rights and making my argued opinions in result I would get tortured with over dosing of forced antipsychotic drugs. I have even witnessed nursing staff murder a co-patient and it was sickening,frustrating and very sad part of my life. I also have a young friend who got an E.C.T done and it has completly fried his memory. after the reinforcement of drugs I have had tremors symtoms of N.M.S head pains, heart cardiac pains,weight gain ,dizzyness and sleepiness all caused by side affects of antipsychotic drugs. I suffer each day with the symptoms and I don’t think I will live that long on psychiatric medication its deadly look at the statistics if anyone can help me with this prosectution I would appreciate all the help I can get please I can name a few people who were responsible for the murders of some people:
    Dr. David Cochrane (psychiatrist)
    R.N: Mark Samuel ,R.P.N: Sandy ,Robb

    All this took place at the Northeast Mental Health Center abbreviated N.E.M.H.C use to be called the north bay psychiatric hospital
    P.O. Box 3010 4700
    Highway 11 N
    North Bay, ON,CA

  15. Dr. David Cochrane. I was molested by DR.DAVID COCHRANE . I’am 13 years old and when this happened he told me he was giving me therapy , well let me tell you he did all kinds of sexual things to me ,and told me that it was okay cause he was the doctor and does this stuff all the time .it hurts my feelings i told my parents Dr.David Cochrane molested me, but they dont’t believe me .I didn’t know that he also works at north east mental health center in north bay, ontario and is a psychiatrist . Canada,ON,North Bay

  16. can’t say

    What the doctor did to you was wrong. It is wrong for a psychiatrist to have sex with ANY patient of ANY age. And it is wrong for an adult to ask a young child to have sex. It sounds like you know this, but I wanted to make sure you also heard it.

    I don’t know Canada laws. But in the United States, psychiatrists and other therapists can lose their license if they have sex with a client. (That means they would be forced to stop doing therapy.) I assume it is the same in Canada.

    I’m sorry your parents didn’t believe you.

    Are you able to find another adult you trust? Could you try talking with a teacher, or the parent of a friend?

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