What it means to be real

Standard

I’m real.

I’m a real person.

Just as much as anyone is.

That means what happened to me was wrong.

Oh god.

That means they hurt me. They hurt me badly.

I couldn’t see it.

Everyone else was outraged.

I wondered what the problem was.

Because I wasn’t a person so what happened to me didn’t matter.

Until a couple days ago.

Then suddenly everything mattered.

And rage. And pain. And everything hitting me at once.

When they talked to me. They didn’t talk to communicate. They talked to control. We were “retards”. Even if they didn’t use the slur, the meaning of it was there.

I cried more that week than I cried the year beforehand. Not the usual kind of crying either. The kind that is more like screaming.

When they made it clear I couldn’t call my power of attorney for healthcare when I had a serious lung infection. When they called someone else instead — they called, not I called. When they wouldn’t let me call anyone.

When they told me that people there are free to call home at any time. (As long as they approved.) Just after making clear I couldn’t call who I wanted when I wanted to — needed to — call them.

The constant contradictions. Tell her whatever will calm her down and keep her quiet. She’s just a “retard”, she’ll never figure it out.

And I never did figure any of it out right away. They liked that. My comprehension issues prevented me seeing the way they lied, talked nonsense even, stuff just as incomprehensible as saying “Because I’m a duck” when asked why they’re taking a bath. So they’d tell me they were ducks and it would shut me up in the short term and they liked that so they did it a lot.

They did it to everyone else too.

At one point, I actually noticed that what they were saying made no sense. And told them so. So they just came up with something else to say that made no sense. And then something else. All of them unrelated to each other. Until they found one that shut me up and got me to do what they wanted.

When I got mad because someone in authority judged me incapable of something at a glance, the problem turned into me. Because apparently yelling “EYY!” in an annoyed tone of voice is really terrible compared to judging someone’s abilities without even knowing them, trying to restrict their access to an activity that everyone else gets to do. Suddenly the only problem was my anger. And I would not be allowed to participate in the activity I was judged incapable of until I stopped being mad.

Then they told me I was judging this lady unfairly. Let’s see. She judges my abilities by glancing at me and attempts to prevent me from an activity I excel at, on the basis of that glance. I get pissed off as a result. And they say I’m the one judging people unfairly. (Even though I hadn’t said anything about her, other than that she was wrong about me. They did things like this, a lot, and succeeded in keeping me completely off balance and doubting my ability to know anything.)

They told me all this in a tone adults use with children and only children.

I called them on that. Multiple times. They denied it and told me I just didn’t understand that adults take that tone with each other all the time.

Then why did they call us girls and boys, and each other women and men? These are the questions that don’t enter my head at the moment of hearing their “shut her up by any means necessary” explanations.

Don’t get the impression that I went there ready to stand up for myself, and did so whenever anything went wrong.

I rarely did. And only with profuse apologies. I only got openly angry once or twice. It wasn’t safe to. If I did ask for something, I begged, I pleaded, I apologized for existing at all. I made myself so small I couldn’t even see me. I wasn’t just passive, I was actively passive, that’s a whole new level of passivity.

And god. When I realized I was alone. And I was very sick. And I had no way to call anyone on the outside. And nobody was familiar. And I was totally at their mercy. That’s when I completely broke down and cried for hours.

They told me I had no reason to fear for my safety. They told me that one of them had a degree in special ed and another delivered babies so they were good people I could trust, and could never engage in abuse. They told me that something was wrong with me and fundamentally wrong with my ability to deal with people in general if I didn’t take people with enormous amounts of power over disabled people, at their word that they’d never do anything to harm us, even as they were trampling all over my basic human rights. Because they’d never abuse people.

Which is why, whenever an elderly woman fell, they yelled at her. “Quit faking. You have your own two feet. Walk on them.” She wasn’t even allowed to sit down when other people were standing. They never said a word to her that wasn’t either telling her what to do, or berating her for sitting down on the ground, or falling down. And when she fell, sometimes she managed to make it a controlled fall (which only increased their anger at her). But sometimes she fell hard, really hard, in ways that had to be doing injury. She walked a tiny, shuffling, wobbling gait that had severe pain written on every step.

I believe that woman will die. And when she dies, they will find that it is from a condition she had for years upon years. And it will have gone untreated. And they may have been able to save her. But they won’t. Because her parents say she’s faking everything (at their age, that may simply be an excuse not to provide care that they’re too old themselves to be able to give), so they must be right and verbally abusing an old woman for falling is somehow ever okay because of this.

WE ARE HUMAN BEINGS. YOU CAN’T JUST DO THIS TO US.

And yes, I tried to put in a word for her. And they told me that if I was really concerned, they could arrange to have the director explain to me why this was actually appropriate behavior on their part. Because she’d known her for years so she had a good grasp on the situation.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

They were abusing a woman and the problem was that I was upset about it.

And the problem then was that I didn’t feel safe — feared for my life. That was wrong of me. Because it hurt the feelings of the poor little director who had all the standard credentials of a professional do-gooder and of course ran the place so she could do no wrong and certainly never be complicit in abuse.

I was coughing up green phlegm. Very green phlegm. I asked to call my power of attorney for healthcare. They said I couldn’t. I told them at home I could. They said this wasn’t home and they did things differently here. If I made a call at all it would be after they had an hour-long meeting on whether it was appropriate.

On a day when every hour counted as far as getting antibiotics from a system that takes a lot of time to even get hold of a doctor. With lungs that have such serious trouble clearing infections that I had to go on more than one course of antibiotics in the end. With a lung condition that (if left untreated) can go into a vicious cycle of infection -> damage -> more infection -> more damage, ultimately ending in death if the infections don’t kill you first.

They wouldn’t let me call outside and I was in danger and I was terrified out of my mind. And when they do make a phone call. It’s to someone they had no legal right to talk to. And their biggest concern is whether I was lying when I said how often antibiotics make me poop.

(Because I used the phrase “all the time” and then clarified that like most usages of that phrase I simply meant “a lot more than usual”. This was their big concern, that they somehow couldn’t trust me to tell them how often I shit when I am on antibiotics. But my case manager, who isn’t around enough to know that, is the only one they’d trust.)

Then the issue became that I took the phone from them to try to communicate directly to the case manager. Out of desperation.

And then the issue became whether I “took” the phone or “grabbed” it, because this is a massive problem in an urgent medical situation.

And then the issue became that I closed my laptop cover a little to get a bit of privacy while trying to compose my thoughts in a hurry. This apparently meant that I no longer wished to be part of the conversation.

And then the issue became that when I typed words in a massive hurry because they were threatening to stop the entire phone conversation over the above, the words I typed were not complimentary to this poor woman who delivers babies and therefore could do no wrong.

(That’s what they told me. That she delivers babies. Therefore she couldn’t have done anything wrong. I’m not making this up. It’s a good example of the “because I’m a duck” form of answering questions around there.)

This also illustrates their weird power plays — when in doubt, turn things around so the disabled person is at fault for something, however little, and focus all conversation on that thing. I was far too sick to be able to keep the words straight enough to insist on staying on topic.

They wouldn’t let me rest.

No more than one hour a day lying down. If I even needed one more hour than that I was out of luck. And didn’t belong there. Because the point of being there was to do every activity on their schedule. And if I got too tired and had to skip one, well then I must not really want to be there.

And if I did lie down they told me I was taking staff from other people who needed them.

At one point I was approached by three people at once who all wanted to talk to me about what a problem I was being. Why? I had to pee too often, at inconvenient times of day.

I started holding my pee. I got a UTI.

The lack of rest contributed to the sinus infection and the lung infection. It trashed my immune system. But that’s okay because I got to all the activities on time!

Later, I told them how easy it is to manipulate me by telling me that my actions are harming someone else. I will usually then avoid doing it. Even if it kills me.

Towards the end I told them my life was in danger. That I had to rest until someone took me home. That this could be a life and death issue if I didn’t rest. That I have instincts that tell me when something reaches that point and that not heeding them leads to trouble. Always.

They said they understood and that this was fine.

Five minutes later they told me that if I rested, it would prevent two other people from saying goodbye to our staff person.

I objected.

They kept on me, using all the weaknesses I’d revealed to them against me, until I relented and allowed them to take me out to the activities.

They didn’t care if I lived or died as long as I made it to the activities.

I was very sick. For weeks.

I stopped going there after a week and people hearing my stories were outraged on my behalf.

I wasn’t.

Because to me, I wasn’t a person.

To me, nearly everything I just described was okay.

To others, it sounded more like abuse and neglect.

I was shocked to hear them use those words.

I couldn’t understand.

I wanted to go back once I got better. To show them I could be good when I wasn’t so sick that I screwed up and showed inconvenient emotions.

I didn’t relent in that until someone basically asked me if I had a death wish.

* * *

By the time I was old enough to be aware of myself as a person, other people had already made clear that I wasn’t, actually, a person at all. So I never learned that I was.

I still don’t understand how it is that most people develop self-respect so early and without being taught. I don’t understand how people just know certain things, like that it’s possible to physically run away when threatened, and know them consistently, from an early age. Most of the time such a thing would never have occurred to me.

I was around my early twenties by the time anyone started systematically teaching me I was a person. It worked, a little.

I started doing things based on this knowledge.

Then I suddenly at one point started getting huge amounts of attention for what I was doing. It came out of nowhere as far as I was concerned.

I hated it. Positive, negative, didn’t matter, I couldn’t stand it. I wanted people to pay attention to what I said, sure, but not to me.

(And frankly, most of the attention I got? Was not about what I said at all. Not even the “positive” attention. Much more of it was about the fact that the sort of person others assumed me to be could say anything of any kind at all. They’d promise they’d showcase my ideas, then they’d make it all about this image they had of me and then substitute their own ideas for mine, so that next to nothing of my message got out. If my messages had truly sunk in I’d have gotten much less praise than I did.)

So without even knowing I was doing it, I ran away. I buried any sense of my own personhood as deeply as I could manage. I guess I must have thought that would keep me safe. Not that that makes any sense at all.

This did stop my terror at getting all that attention. But it stopped a lot of other things too. When bad things happened to me, I barely noticed. And when bad things happened to others… I don’t know how to describe it. It’s like I’d glance out the corner of my eye and turn away unless something stopped me.

Because this is real life, and not the world of language, none of this was absolute. I did react to things sometimes. And while a portion of me was quite deadened, the rest of me was capable of being happy in other ways and in other areas.

But before I knew it, I was voluntarily walking into a rec program that had warning flags out the wazoo. That a person who works at a good program in the area (yes they exist) tells me that she knows someone who goes to this place an adult and comes out acting like a six year old, totally not herself.

I walked right into this place whose power structure is straight institutional even if it doesn’t look like what most people would call one. And they hurt me. Badly. On levels I didn’t think I could still be hurt. And I barely felt it, while I let them take even more from me than I’d already given away.

I had to take others’ word for it that what they did to me was terrible.

Because you can’t bury your personhood and not have it screw with you on every possible level.

This was probably behind the events leading to my hospitalization, too. When you know you’re a person, you care more about your health than just that it really freaks out your friends and family when you’re seriously ill. One friend tells me that when I made clear it was more for her sake that I was taking better care of myself now, she realized just how little basic self-respect I had.

But taking care of myself seems to be how I’ve made a major shift in all that.

Because I’ve been getting into the habit of checking on my body’s levels of pain, exhaustion, and other things, several times a day.

And somehow, connecting to my body that often has caused some links to form that I’m not sure have ever formed to this degree before.

The final thing that did it was reading the blog Just Stimming. I kept noticing that Julia had something I used to have. Something that was gone from all of my recent writing, for a long time now. I couldn’t put my finger on it. Then I realized it was that sense, that one that goes, however faintly, “I am a real person and I don’t have to take this.”

And then the entire world shifted in an instant.

It got more three-dimensional, emotionally. And I got more three-dimensional too. And there was something where there had been nothing. It was like suddenly realizing that I had a tail, and the only reason I’d not thought I had one was because it had fallen asleep. Only it was a little more central than a tail.

And then everything that happened at the rec program hit me over the head at once and I started crying so much I thought I’d never stop. And for the first time in a long time I was furious. My friend told me to just be sure the anger came from love and not hate. It did.

For some reason the part that hurt the worst was not that they could have killed me. It was that thing they did where they told us random nonsensical things to shut us up, knowing we wouldn’t notice it in real time. That just seemed to hold within it more bigotry than everything else combined.

Mind you, they weren’t all bad. The staff were better than the administrators. But even the better ones had instructions to follow which are impossible to both follow and respect basic rights, which is exactly how institution-type power structures function.

I’d wanted so badly to be one of the good ones. I remembered thinking how bad some of my friends were, because they’d never have tolerated the bullshit. I turned my soul into pretzels trying to fit into this place and nothing I did was good enough. When I told them (while crying my eyes out) that their pointlessly rigid rules and schedules were impossible for me no matter how I tried, they told me I should have brought one to one staff. As if I could afford to pay one to one staff, among all the other reasons that approach to things is wrong.

I actually told them how they could make the place more accessible to me and others who needed to rest more often, without even breaking their rules. They didn’t like the idea. It would have interfered with their attempts to force people to attend activities we didn’t want to or couldn’t attend.

I witnessed a staff person telling a woman with documented gut issues that “walking helps stomachaches” (fabricated on the spot) just to get her not to lie down and rest when she was doubled over in pain. At one point all three of the people assigned to our staff person wanted to rest. Technically if the real problem was “taking her away from the other two”, this should have been fine with them. But she forced the third person to attend the activity anyway. Because that was never the real issue, it was just one more lie they used to manipulate us.

At one point while we were resting, this one woman started making horrible retching sounds, that we’d never heard her make before, and there were no staff around. So three of us decided that she might throw up and the most mobile of us would go get staff. That person did. The staff person came in, barely glanced at the bed the retching woman was lying on (with the covers over her head so she wasn’t even visible), and said “Nothing’s wrong, she’s asleep.” We tried to explain that really, she sounded like she was throwing up, and we were worried about her, and not making this up. The staff person basically told us to quit worrying and mind our own business in the future, and left.

They really liked this one woman. She was even more passive than I was. She was capable of holding a regular conversation. But when staff were around, she’d hear the staff person saying something, then she’d repeat it. Like “Lunch now, right?” She’d repeat “Right?” with higher and higher levels of anxiety until staff confirmed it. And then she’d ask “Am I a good girl?” with the same level of anxiety until someone told her she was. And she always was, because she barely breathed without confirming it was okay first. They adored her for it. They saw it as sweet. I saw it as a person who was utterly terrified. They couldn’t see that at all.

I also noticed that like her, most people there were much older than I was. In contrast to just about all other rec programs I’ve been to where the age range is a pretty normal one. I’ve wondered if it’s because most of them are from an era where this sort of treatment was what you could expect, or better. And most of the younger ones were people whose impairments were mild enough that they could handle the place’s rather draconian rules without their bodies forcing disobedience the way mine did.

I’ve been told by doctors that the lack of proper rest — simply tilting my wheelchair back and pushing it into a non-restful location doesn’t count given that when you have as little energy as I do, even sensory processing can wear out bodies that are not even autistic — is likely how I ended up with three kinds of bacterial infections at once. Infections bad enough that by the time I got home, I was heavily disoriented for a few days. (At one point I started essentially dreaming while I was awake, I could feel that I was in bed but all I could see was this weird alien skyscape.) And fell so hard that I bruised a rib, and injured my hip in a way it hasn’t recovered from months later. And lots of other fun stuff.

But although I take being that ill quite seriously, it’s still the degradation of being manipulated the way many of them manipulated us, that really hurts and pisses me off the worst. And just… the way they found every hole in our mental defenses and swarmed right in, using those holes to further manipulate. And worse, I don’t think some of them even think any of this is wrong. One of them gets a lot of her ego out of being thought to be “good with the developmentally disabled”, and I am dead certain that’s how she thinks of her manipulation skills. As being “good with us”. But in her every movement and gesture is the concept of “retard” — unspoken, not even to herself. She’s uncomfortable with us but she hides it and thinks we can’t see… but we can, and I’m far from the only one who sees it behind the tense smile and the gratuitous hugging(!) and all the other BS.

I’m supposed to be too scared to say any of this.

But I’m not.

Not anymore.

I’m a real person.

And I know it now in a way I never have before, not even before I started running away.

And I didn’t deserve any of that. Nobody does. Not even those, like me, who were willing to settle because we think better isn’t possible or something else is so much worse or what do we matter anyway or whatever other ways we excuse things to ourselves.

And there is a lot, now, not just this, that I’m not going to put up with anymore. No matter what happens. Nothing is worth killing off bits of oneself one by one.

That’s much more obvious now that I see the contrast. Everything has depth now that it lacked just a few days ago — you can’t run away from pain in that manner without killing off a fair degree of joy as well. And it’s clear that even my reactions to what happened to others were affected, not just myself. I’m just glad something finally happened to jolt me out of it.

For some reason this mental image keeps popping up. Of someone beating me with a stick over and over. For years. And then suddenly my arm reaches up, grabs the stick, and shoves it away.

That’s what’s finally happened.

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.

23 responses »

  1. This must have been so hard to write, thank you for writing it. It is so familiar, I have had so much of this happen to me too. Unspeakable brutality.

  2. Whoa. Powerful shit. What makes it powerful is that it’s REAL, not that it’s dramatic or gut-wrenching, which it is. How can you, and others, use this analysis of your experiences, to help others who are in the same or similar position to yours?

    In other words how can we help get people out of this and similar situations?

  3. I wish I had words for this. I feel like I should say something that will somehow honor what you wrote and how much it must have cost you to write it … how much it must have cost you simply to live it … how much courage it must have taken to hit “publish” to share the painful lessons you have learned with others. But I also feel like this is somehow too big for mere words, that words cannot begin to capture the honor and respect I want to send to you, from my computer screen to yours.

    Thank you, Amanda.

  4. I know. I can’t figure out what to say either. I just have this feeling like something is wrong and out of place and it needs to be fixed and I can’t get a grip on it. If this happened to one, it is happening to many others, and that is wrong, and they are all real people.

  5. This made me cry, so I hated it :) and got a little lost reading entries (essays?) you’ve linked. I don’t remember which one it was exactly, but you discussed your difficulties with spoken language and I was captivated. I cannot tell you how many times I’ve had to explain to people I wanted to tell them what I was thinking, but the language in my head isn’t English…it isn’t even words. Patterns and pictures and impressions and feelings and sometimes smells take an awfully long time to translate into a language other people can understand. Most of the time, I don’t bother…but I’m incredibly grateful that you did :)

  6. What you’re describing is torture- you being tortured and seeing other people tortured. I mean that in the most literal way.

    I cannot tell you how good a thing it is that you know you’re a person.

    I am one, too.

    I remember as a child having older children jumping on me and not knowing I could do anything about it or react to it. I am in my 20’s, now. It would probably have taken a few weeks in an institution before I would have put up with that again. Now it will take longer. That is a huge gift that you have given me- again meant in the most literal way.

    thank you thank you thank you

  7. What was done to you is called “gaslighting” – http://en.wikipedia.org/wiki/Gaslighting . In short, it’s when people make you doubt your own (completely valid) perceptions and/or emotions by making them seem irrational and/or that *you’re* the one causing the problem. It’s psychological abuse, plain and simple. I’m so sorry you had to go through that, and that there’s still so many people being abused via gaslighting.

  8. I’m glad you made it. I obviously don’t know you personally, so I can’t comment on the value you must hold to the people who are your friends. But I can say that your writings here have contributed a lot to my development as a mental health “professional.” I put that word in quotes to indicate my awareness that this is an artificial title, handed to me by a system which has a stake in making sure I have more power than other people involved in that system. I hope that I am able to use the information you offer here to curtail my own participation in the kinds of dehumanizing relationships and institutions that you describe.

  9. This happened recently? Haven’t you been terrorized enough in your life?!

    There’s nothing I can do after reading this but go outside and stomp some fire ants in frustration. And even that’s not enough-the vermin you dealt with are bigger, deadlier, and protected by society.

  10. this makes me thing of the book: When i say no i feel guilty. ( u can usually find it in a thrift shop)

    people get better when one treats them with respect. They cooperate because they want to and not because they are harassed into it. Shame and blame are shit means to make someone comply. Peer support is great in this way. If a peer support person has been there she will not be a party to this sort of torture. I have no idea how you stood it but then how did i stand it and i am much more able than you are in some ways. Actually i don’t know if that is at all true. What the heck is able? Got to think on that one.

  11. It was actually fairly easy to write this.

    I mean it was hard to get to the point I got to, that made me able to write this.

    But once I was able, it just came out. It was certainly emotionally rather intense, but this change, whatever it is, has made me much more able to just hit the “publish” button without feeling any fear at all.

    What people think has taken on much less of a role in how I feel about doing things — it used to be terrifying because I have in the past been at the mercy of people with a lot of power and what they thought mattered. But now, it seems to matter much less, especially in regard to the sort of people who are really just being jerks that I don’t have to pay much attention to. I think it could still be a problem if I got thrown off-balance in some manner, but in most situations it’s not a problem at all.

    It’s also easier to have intense feelings without getting into a state where they just perpetuate themselves or go recursive or something.

  12. Pancho: I remember other kids jumping on me too. At one point a teacher told them to stop, and they said something like “See? She doesn’t feel it, so it’s okay.” Because I wasn’t reacting outwardly (to anyone, at that point) they assumed that I didn’t feel anything. And they would jump up and down on me just to see if they could provoke a reaction. (Which is one reason I’ve always found the idea that if you don’t react to bullies, they’ll stop, to be really strange. Whenever I didn’t react, that seemed like bait to them, to push me as far as they could to try to provoke a reaction.)

  13. Robin: I hadn’t even thought about gaslighting as a good description of what they were doing, so I hadn’t even thought of it. I do remember at one point, they told me that my reactions to them showed that I “always thought the worst of people”. Which struck me as really odd, considering the fact that I was going out of my way to think the best of them, and that I’ve pretty much never had anyone tell me that before. I’ve got other faults but that’s not one of them.

  14. Also, I’m doing a lot to try to change how they’re treating people. Because I know it’s wrong and I know that people even more passive than I was are at even higher risk from this than I was.

    • That’s good to hear.

      I’m assuming you have a good reason for not mentioning the name of this place. I hope things improve there.

  15. Amanda Baggs it was about the same with me, I wasn’t reacting outwardly so they thought it was okay to keep doing it. Actually I could easily see someone being pulled into thinking it was okay who wouldn’t otherwise think that.

    I think whether ignoring bullies works depends on how predatory they are though. If they’re someone who actually seeks out people who can’t/won’t fight back then ignoring them will encourage them. The ones who aren’t predatory will just get bored if they don’t get a reaction. People who haven’t been harassed/bullied don’t know the difference between the two or maybe they just don’t really believe a “normal”/”nice”/etc person would actually be predatory.

  16. Sadly this is so true! Thank you for sharing this with us. I recently started working with people probably even more “passive” than you were and i was shocked and angry to see how they are treated kind of like not fully human and i live in a country (in Northern Europe) that boasts of being one of the top countries in respecting HUMAN RIGHTS and equality of it´s citizens. I´ve been trying to change the attitude of the staff and your writing is giving me courage to continue in spite of the resistance i face which i know is nothing compared to what you have had to go through. It´s also helping me reflecting on my own attitude towards the people there. Thank you for start fighting back and inspire us who want to join the fight!

  17. Pingback: International Day of Mourning and Remembrance: Institutionalized Lives of People with Disabilities–Forgotten Lives and the Ones Who Fight Back « We Can Do

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