“I don’t know that person’s program.”

Standard

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

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About Mel Baggs

I am a highly sensing person. I am a child of earth and water, I was born into a redwood forest and I left the forest but it never left me. I'm 34 as I wrote this. If I had an alignment like in role-playing games and MUDs, I'd be chaotic good all the way: I don't think it's possible to fill ethics into a moral code, the world is far too complex for that. I let the world be complex and chaotic and try to respond situation by situation from a small number of principles of right and wrong. My responses may seem to contradict each other, but that will be because either the situation has changed, or I have changed. I am a poet who is trying to practice more every day, hence the poetry blog. I am a cat lover and live with a wonderful elderly cat. I am a painter when I have the time, energy, and resources. I have multiple cognitive, physical, developmental, and psychiatric disabilities, and my health is not usually stable. Put all together, I'd be considered severely disabled. I get a lot of assistance throughout the day. I am a real living cyborg, part human part machine: I have a GJ feeding tube to feed me through one tube and drain my stomach through the other,, an InterStim implant for urinary retention, and a port (a permanent central IV line). I love life. I think Love (not the sentimental emotion, but the property of the world) is the most important thing that human beings can offer each other. Being near death enough times has taught me that, and has also taught me that I have no time for bullies or pettiness. I'm involved in disabilty rights and other causes that people these days would call 'social justice', but I don't consider myself part of the 'SJ community' or the 'anti-SJ community' because of that thing I said about pettiness -- they're more about one-upmanship than fixing the world. I wish they had not taken over the words 'social justice', which used to mean something else. I love talking to just ordinary people about fixing the world, they have far more realistic ideas and more likelihood of putting them into practice. I'm a Hufflepuff to the core, with some Gryffindor tendencies and even a little bit of Ravenclaw. I admire some Slytherins but I don't have much ambition or cunning at all. I still think the Slytherin common room is second best, with Hufflepuff coming first. My favorite color is brown, especially when combined with a bit of yellow or blue. My favorite music is country, and my favorite country artists are Kathy Mattea, Lacy J. Dalton, Kris Kristofferson and Rita Coolidge, Merle Haggard, and Loretta Lynn. I don't like most new country but i occasionally hear something on the radio I like. At an early age, my family listened to country almost exclusively to the point where I thought all the different types of country were all the different types of music! I couldn't put Lacy J. Dalton, Buffy Sainte-Marie, Dolly Parton, Merle Haggard, and Kris Kristofferson in the same category. Although now that I've grown up I can hear that they are all country, but as a kid my ear was trained more for minute differences in country styles, than for recognizing country from other types of music. Country isn't all I like. Some other bands and artists I like: The Cocteau Twins, Dead Can Dance, Rasputina, Jefferson Airplane, The Beatles, Rich Mullins (I'm not Christian but some Christian music is amazing), ), The Raventones/T.R. Kelley, Planet P Project/Tony Carey, Sinead Lohan, Donna Williams, Suzanne Vega, Phideaux, and Jethro Tull, to name a few. I love the Cocteau Twins in particular because they are everything being sensing is about: Words are chosen for their sound, not their meaning, the voice becomes yet another instrument rather than a conveyor of words, raw emotion pours out of them, there are layers upon layers, and they were around for long enough there's lots of their music in a variety of different styles -- including their later stuff where the words have more meaning than just sounds. Each period in their music has its benefits and drawbacks but I love them all, or nearly so. Their music comes as close as any music can come to conveying how I experience the world, as what Donna Williams calls 'pattern, form, and feel'. And Elizabeth Fraser has a beautiful voice, I once had a teenage crush on her. As I type this, I have a cat sitting on my shoulder, cheek to cheek with me, peering around and occasionally rubbing me. My relationship to her goes back 15 years to when she was six months old, and we've rarely been parted since. It's been an honor to watch her grow into a wise but crotchety old lady cat. She knows she's technically older than me and tells me so sometimes, especially during arguments. She has trouble with the fact that there are parts of the human world I know better than she does. She sees me as her big, dumb kitten who needs protecting, and is beside herself with worry if I end up in the hospital (which seems to happen frequently these days). I don't experience myself as having a gender identity, I call it being genderless. You'll sometimes see the pronouns sie and hir in my work, they are gender-neutral pronouns pronounced 'see' and 'hear'. I was raised female, which gives me both disadvantages (outside the trans community) and advantages (inside the trans community). You don't have to remember my pronouns, lots of people have trouble with gender-neutral pronouns. I won't be upset with you. People make mistakes, and some people just can't get the hang of new words, and that's okay. I have vocabulary problems myself (mostly comprehension), I'm not going to penalize other people for having vocabulary problems of their own. Right now my father is dying of cancer that's metastatized so many places they can't figure out where it started, my mother has severe myasthenia gravis that can land her in the ICU (and she's my father's primary caretaker), my "second mother" (who took over when I grew up and my family didn't know how to prepare me for the world) has endometrial cancer, and my cat is getting old. All of this is bringing death to the forefront of my mind and my poetry. In fact I think I've been able to write more poetry because of all the feelings about so many people dying or with precarious health. It was easier to handle when it was me that was going to die (averted by diagnosis and treatment of severe adrenal insufficiency that'd been going on for years). It's harder when it's someone else, someone you love. My other hobby is crocheting, and a lot of the time if I'm not writing, it'll be hard to find me without a crochet hook or occasional knitting needles in my hands. I love to be able to make things. I have been making hats and scarves with spare yarn (which I have a lot of), and putting them in City Hall Park wrapped in plastic, with notes saying "If you're cold, take this." I know what it's like to be cold in the winter, and if anyone takes them and stays warm I'd be overjoyed. You may have noticed I'm long-winded. This is actually the result of a language disability that makes it difficult for me to leave out details, to see two almost-identical things as perhaps something that doesn't need repeating, and to summarize or condense down my writing. I know this is a flaw in my writing, and it even prevents me from reading it sometimes, but I've found no solutions. Sometimes on my longer posts I'll put a "TL;DR" ("too long; didn''t read") summary at the end in bold letters for people to skip down to.. But even those don't feel adequate, even when I can do theme, which is not always. I think I'm getting better though. Learning haiku and other short poetry forms helps me condense my words better. Anyway, I hope that gives you enough idea of who I am. At my most basic, I care about Love more than anything (whenever I come near enough to death, I feel like I get asked the question "Did you Love, and did you express that Love properly?"), but like everyone I get sidetracked into things that are much less important. I try to make my writing an expression of Love. Sometimes I succeed.

15 responses »

  1. Thanks Amanda. You are so right. In my whole life I only met one person who actually apologized to me and went on to change her attitude

  2. “That desire to trust society gets in the way of understanding every kind of injustice.” <—-Very powerful indeed! Thank you for your honesty. I am sorry for how you have been treated.

  3. Sorry to be posting way off topic, but because I knew this is something that would be of interest for some readers here: I just discovered that there is now a phone ap that is meant to allow people to raise funds for nine different charities just by walking, running, or cycling–and one of the beneficiaries is Autism Speaks :-( It is not clear if you can ensure that your contribution goes to some of the other orgs (while avoiding the orgs you don’t want).

    Also, the videos are not even captioned. (Are we surprised?) I admit at least the one I watched was fairly visual and even somewhat understandable–as long as you have read enough of the other info on the site to guess what’s happening. Without that background I’m sure I would have been completely lost. But it was still frustrating to watch the video without being certain whether there might be more spoken content I’m missing that could give me a more nuanced understanding of how it all works. More info about this phone ap and the charities it raises funds for at:

    http://charitymiles.tumblr.com/

  4. And what does “DD” mean precisely? To use that as a concatenation assumes too many things. That Development (whatever that in itself means) can be derailed by being disabled which in itself begs the question what is meant by the verb in this context “to disable” and never mind substituting “impairment” to seperate the two concepts, it still is a screw up.

    So when the slugs ate my beans were the beans developmentally disabled, or the slugs particularly advantaged, or was the weather the overall defining variable?

    Developmentally disabled may well be when the slugs ate my beans that would have developed naturally otherwise, so who in this metaphor for the times are the slugs?

    Now as to the nature of “Staff” that is to me, that piece of a tree I hacked down and made into something that can support me. That’s literal, but what would the nature of metaphorical extension be. Rod and Staff are connected in the Biblical translations, and have variable meanings in English. Rod is a measurement, but then back in the day one could be corrected by a whack of the “board ruler” a regime of casual corporal punishment.

    Staff, wand, cane, they are all badges of office and signifiers of regiment, never mind I rely upon the support of a cane to walk. Complicated isn’t it?

    • When I use it? I’m mostly referring to a bunch of people who are in the same boat because historically we’ve been grouped together and treated the same way for so long, that there’s an entire “flavor” to the way we are treated. Like “mental illness”, it’s not a thing in itself, it’s a group of people who have (more or less, with fluctuations in who qualifies and who doesn’t) been subject to the same treatment for over a hundred years now. It’s the only word available to me to name the system I’ve spent my entire adult life in (and parts of other parts of my life).

      It’s me, Larry. By now you must have figured out that the fact that I use a word doesn’t mean that I believe in its literal definition the way most people would use it. But I do have to use words, and I’m not going to sit around torturing myself trying to make them fit, because words will never fit. You can postmodern yourself all over them however much you want (and you will, regardless of what I or anyone wants, just like I will always use words as approximations whether anyone likes that or not), just try not to assume that I’m using them because I believe whatever definition you’re deconstructing at the moment.

  5. Jesus H Christ, Amanda, this is such BS that the disabled and people with problems are treated like subhumans to be controlled by the “normal”, self-important people who think they know what they’re talking about.

  6. You have a very good point about the way people tend to justify abuse of disabled people, because they don’t want to believe that staff at institutions, etc., are truly doing horrible things. I guess it makes them feel more secure. I recently noticed the same thing with mental illness–people blaming crime and such on “insanity”, because they don’t want to believe that people would willingly do horrible things. That makes it worse for people with mental illness–it causes social distance, exclusion. When you have a mental illness it’s often one of the hardest times in your life; that’s when you most need support. But all too often, you don’t get it. I got kicked out of school and evicted from my apartment because I was hospitalized for depression… worse, at the time, I thought it was perfectly justified for them to do so. It wasn’t.

    Maybe it’s because people know that if they really thought about it, they’d be forced to think about the fact that everyday humans are capable of willingly doing truly evil things, and that they themselves, if they don’t listen to their consciences, may also end up doing something very wrong. It’s not a reassuring thought, but it’s necessary that we be aware of it, so that when we see our own tendencies to be heartless and cruel, we can avoid going into denial and listen to our consciences instead.

  7. Thankyou so much, Amanda, for this entire blog. I am sixteen and really want to become a social worker. More and more, I’ve been thinking that I would specifically like to work with people with disabilities, as I learn the difficulties that you and others face. I want to make things better, even if only for a few people at a time…

    But I am also incredibly worried that I’ll fuck up and hurt someone badly. I have a history of depression and anxiety, and fear that in a bad mood because of this and the stress of caretaking I will abuse a patient. I am doubly scared as I read your blog and others and learn of the many ways people can unintentionally inflict harm upon those they are supposed to help.

    However, as I read and read, I also become more aware of potential blindspots. No one thinks of themselves as malicious or an abuser, after all… but I think that, thanks to this blog and others like it, in the future I will catch more of my mistakes, and hopefully be a better caregiver.

    Thankyou.

    • Melissa, the very fact that you’re thinking about this now means that you have strong self-awareness and are much more in tune with power imbalance issues than the majority of people who work in social and healthcare.

  8. Thank you, Amanda. I’ve heard this said as “You don’t know their child,” or even “you don’t know their other problems.” Therapists and caregivers who are good and who don’t engage in abusive behavior want to believe that everyone in the profession is like that. And they aren’t. But even very well-meaning people with good intentions can use behaviors and programs and therapies that are denigrating – because that’s how they were taught. This is an important post about a painful topic that most people would rather not have to think about.

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