Don’t think that we don’t think.
That’s the words on a poster I keep in my home.
I can’t stand the way people use presumed cognitive ability as a measure of who gets to live and who gets to die. Or who ought to live and who ought to die. Or who ought to have any choice about whether they live of die. I can’t stand it at all.
I came face to face with it in the hospital when those doctors were pressuring me to die. They see a cognitive impairment and they see someone whose life must not be worth it.
And I can’t stand how they see me. How they see other people.
They see our lives as nothing but limitation.
I just read a book in which the author describes trying to persuade people to let their relative die. They have a window of opportunity, he says. Because he will be a quad, and he will never be independent again. And he will have a feeding tube and a trach. And that’s the end of his life. So if they just ended his life before he wakes up in the ICU, then he won’t have to live out that life of limitation and suffering. He puts pressure on the family of the man, unconscious, with a spinal cord injury.
Supposedly, The man will always live in a nursing home. Because nursing homes are supposedly caused by us being disabled, rather than because of policies towards disabled people that say we belong in cages, cages full of people like us, cages full of people who oppress us and make us miserable daily, cages where we presumably have nothing to live for, because who would want to live in a cage?
Never mind that people built the cages, and people can unbuild them. Never mind that putting disabled people in cages is a practice that isn’t just the natural outcome of being disabled. Never mind that it’s a human rights violation of monumental proportions, happening in your backyard, around the world, and you do nothing, and you question nothing.
My neighbor got MS. A severe, fast acting kind. One day she could walk and talk, the next she couldn’t walk and had trouble talking. One day she was a person and a mother, the next day she was an unperson. One day she had a life, the next day she didn’t. One day she lived next door to us, the next day she lived in a nursing home. She’s lived in a nursing home ever since I was a little kid. Last I heard, she wanted to die. Everyone thinks that everything I just said was totally natural and the only possible progression her life could take.
I can’t stand it. I can’t stand it. I can’t stand it. I can’t stand it so badly that I can barely stand to talk about it. Barely stand to stand up to the people who defend these atrocities and think they’re right and normal and good and proper.
I read a book by an author I love, an author whose books often suggest that objects and microbes are alive. It contained a speech by a character, that seemed to be considered okay. Not just that character’s opinion, but something condoned by the author. In fact, the entire basis of the horror of the book was based in the horror that character described. The concept of people who were human in shape but had no minds.
The character described in her medical training, going to an institution for developmentally disabled kids. This is in a future that’s supposed to be nearly utopian, and they’re still putting DD kids in institutions. So she went to this place, and saw kids that she saw as having no minds, doing things that only people with no minds would do. Sitting and staring. Or rocking and doing other incomprehensible movements that only people with no minds could do. The character broke down in a way she’d never broke down in her life. She was horrified. She cried. She couldn’t function. Because the entire idea of these kids with no minds was unbearable. It was traumatic to her, to be around these kids with no minds.
Triggered doesn’t begin to describe my reaction to that scene. I nearly wrote the author on the spot.
Only what would I say that could make any difference?
No matter what I said, the fact that I could say anything to her would mark me out as different than those children with no minds that her character saw.
Except I am not different, in some important ways.
Because there’s no such thing as kids with no minds. And using the idea, which is so common, as a basis for the entire reason the book was supposed to be scary. Because it was about a creature that ate minds but left people intact. Is so completely horrible. Can’t even describe how horrible.
And my experiences. I’ve had people look into my eyes and say they are empty, that there is nobody there. I’ve had people look at me and jerk away in horror at the idea that there’s nobody there. I’ve had people say in front of me that I had the cognitive functioning of an infant. All because I sometimes look and act and move in ways people associate with mindlessness.
The entire idea of mindlessness has to die. It has to.
Even people with less brain function than usual, have cell function. And cells think. And cells react to each other and act in concert with each other and do other things that show they have minds of their own, even if they’re not brain minds. And that’s true of everyone. We are all made up of little things that think and react, and not just in our brains.
But the kids in the book didn’t even have minimal brain function. They were just developmentally disabled. Many of them probably had severe movement disorders associated with autism or cerebral palsy or intellectual disability. Many of them were probably thinking in a lot of detail with a lot of complexity.
It is so strange to be considering advanced concepts in disability theory while a pair of cops are staring at you asking if you’re even alive, and if you’re alive, if anyone is home inside you. And being unable to do a damn thing about any of it. It’s so strange it would have made me laugh if I could laugh. Or cry if I could cry. I don’t know which. To be thinking more intellectual thoughts, in a way, than they are and be told you don’t exist. I have been in that situation more times than I want to count.
There’s two big problems.
One is the idea that certain people don’t think just because they are or appear to be severely cognitively disabled.
The other is the idea that the amount of standard type thinking you do determines how good you are, how real you are, how worthy of living you are.
Each of those ideas on its own is toxic. Combined, they are deadly.
But people don’t even need to suggest our minds aren’t there, to think we aren’t worth living. That helps. Because people use cognition to determine how real a person is to them. And only certain types of cognition. And only presumed cognition at that. But you don’t even need that.
Because this is a world where ICU nurses can suggest someone should die, because he will wake up a quad and his life as he knows it will be over. He will never be independent again. We have this wonderful window of opportunity in which we can kill him without being punished for it. Think about it. It’s what he would have wanted.
Please excuse me while I go vomit until there’s nothing left in my stomach. Actually never mind, there’s nothing in my stomach in the first place. And I can drain the stomach fluids out through the feeding tube that makes me an unperson in the eyes of the medical establishment.
Because once you have a feeding tube, your life is over.
So many lines they decide.
When you can’t walk. When you can’t talk. When you can’t eat. When you can’t breathe. When you can’t dress yourself. When you can’t feed yourself. They decide all of these is a line where you go from human to nonhuman, person to unperson, life worthy of life to life unworthy of life.
And then there are a lot of lines that are cognitive, too. They talk about persistent vegetative states. They actually use the word vegetative as part of the diagnosis. And they think there’s no prejudice there. They think a person in such a state can’t interact with the world, because they think that all thinking that is important, is carried out in certain parts of the brain, and they think those parts of the brain aren’t functioning.
Except then they look on brain scans and find that a lot of such people have something more akin to locked in syndrome, rather than an inability to think.
But then they decide that their life isn’t worth living in another different way. They decide that people in such a state would never want to be alive. They decide that because they assume that living is about being able to move and talk and do things.
And that’s not what living is about at all. Living is about life. And life usually wants to continue. And many of the supposedly unbearable circumstances of disabled people’s lives are not inevitable. They’re caused by how people react to us. What people do to us. And they do all these horrible things to us and then say those horrible things are a natural part of being who we are. When it’s them doing them to us. It’s awful. And they can’t see their own deadly biases.
So if you have a diagnosis of PVS, you’re screwed. Because either your life isn’t worth living because you as they know you isn’t actually there. Or else your life isn’t worth living because you are there and your life must be unbearable. Either way, they find it easy to kill those of us who reach that state. They even say it’s not a disability, therefore what they’re doing isn’t ableism.
People have all these ideas that they get out of nowhere and they call them real because doctors pull them out of their asses. Another such idea is the idea of a coma.
Supposedly, people in comas aren’t conscious at all. And some people in comas aren’t conscious. But other people in comas are conscious. The entire idea of what a coma is, is based on whether the person outwardly responds to stimuli. That’s how they measure it. Contrary to popular belief, coma is not a measure of how conscious you are.
I know people who have been conscious during comas. They remember things that happened. They heard everything going on around them. Many times, they even remember hearing people talking about killing them.
Then there’s “When I Woke Up” by Rus Cooper-Dowda:
http://www.raggededgemagazine.com/extra/wokeup.html
Here’s an excerpt:
“In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn’t see very well and I couldn’t move much — but boy could I ever hear!
I heard a terrifying discussion then that I will never, ever forget.
Around the end of my bed were a “school” of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, “I’m here!!” No one but me heard me.
They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was “in there.”
And they would, in response, heavily sedate me…
I then started spelling the same word in the air, “Don’t! Don’t! Don’t!….”
The doctors decided that the letters I was spelling in the air were repetitive seizure activity and just happened to occur most often when they were in my room discussing killing me…I even took to writing them backwards to make it easy for them to read…
And their response was to sedate me even more….
But, the nursing staff began to believe I was really and truly with them.
One, in particular, starting bringing in a clip board and a broken pen when she talked to me. She would put ink on my fingers, the clip board under my right hand and then ask me yes and no questions in the beginning.
With her I secretly progressed to answering in sentence fragments. However, by doctor’s orders she was not allowed to document in my file what she was doing and that I was giving meaningful responses.
But…she did save my inky answer sheets and recorded the questions she asked. She got into a lot of trouble for that.
Yet, it earned me a final conference where the doctors had to prove to the nursing staff for political reasons that all my communication was just agitation and seizures.
At that meeting, my then husband, who was a doctor siding with the other doctors who wanted to let me die, held that clipboard which was my lifeline up in the air in front of me. He was not going to make it easy.
The purpose was to prove that the nurses were basically hallucinating and that I was really and truly brain-dead.
To prove I could not communicate, he then put ink on my fingers and asked while laughing, “There isn’t anything you want to tell us, is there?”
In response I spelled out, “D-I-V-O-R-C-E Y-O-U!” The laughter got very nervous then. The doctors called for medication because I was obviously having a seizure.”
So she woke up unable to see or talk, with great difficulty moving, and everyone assumed she wasn’t there. I thought of her when I read in that book about ICU patients who periodically went into frenzies of movement that were explained as happening because they didn’t really understand their situation. And were sedated into unconsciousness every time it happened. And this was standard operating procedure. It couldn’t be that they were trying to indicate that they were in there and had a mind and understood all too well what was happening.
I’ve been severely delirious. Delirium is on a continuum with coma. And it’s a weird state. Most people assume it’s a state where you’re not really conscious of your surroundings, and you may do things but you don’t really understand what you’re doing. In reality, it’s a lot more nuanced than that.
One of the key features of delirium is actually the way you fade in and out, from more severe to less severe. You may be unconscious for part of the time you are delirious, but conscious in others. And when you are conscious, your consciousness may be highly altered in ways that make hallucinogens look like a walk in the part. You may hallucinate. You think differently. In the least severe forms of delirium, you are fairly aware of things, but you may be a little disoriented and have some cognitive problems.
I’ve had pretty close to every severity of delirium, including some that resembled coma a little too close for comfort. And I’ve had both excited delirium and quiet delirium. Excited delirium is where you thrash around and try to pull out your catheter and do other really active things. Quiet delirium is when you just lay there and slip in and out of consciousness. Most attention gets paid to excited delirium, but it’s quiet delirium that is more severe and linked to worse healthcare outcomes including death. I’ve done my homework. Quiet delirium is under diagnosed because hospitals like their patients to just lie there quietly, so we do not attract attention the way excited delirium does, and may not pay much attention to whether the patient is actually aware of their surroundings or not. One time this past hospitalization when I was sliding into a mild quiet delirium and my DPA was alarmed by it and trying to get me to come out of it (it’s possible to affect delirium severity by orienting people to their surroundings, and it improves healthcare outcomes to do so). A nurse actually told her, “I know delirium. That’s not delirium, she’s asleep.” I was moving my hand and had my eyes wide open. She didn’t even notice. That is how quiet delirium gets overlooked.
I can’t describe what severe delirium is like. The parts you are conscious for. It’s not the hallucinations that make it weird. It’s the way your mind seems to be fractured into pieces in a way that doesn’t happen outside delirium. It isn’t like being asleep, being awake, or being on drugs (except maybe deliriants, hence the name). It’s kind of a half awareness. Large parts of your mind aren’t functioning, and the parts that are functioning, are functioning in strange ways. It’s not even like an autistic shutdown, even the kinds where you don’t feel like you have any thoughts or awareness of your surroundings. It’s just different. Different from everything else you could know.
But you’re still there. You’re still a person. You’re still real. You can still suffer and you can still experience joy. I’ve experienced beautiful things while delirious and also terrible things. Usually if I’m delirious I’m in severe pain, like a nine. I don’t know where the pain comes from. But it’s there, always, and it makes things miserable. Maybe your brain generates pain when your higher order functions go wonky.
I’ve also experienced a lot of strange partially odd cognitive states during autistic shutdown, but it’s different from delirium. I’ve had thoughts disappear and the world disappear until all I can remember of those periods is that time must have passed because I remember something. But I couldn’t tell you what I remember. I often lose the ability to understand language, or to use conceptual thought. The world becomes sensory and motor rather than intellectual. Sometimes I lose all ability to move volitionally. That’s usually when people start saying there’s nobody there. But the ironic thing is, that when they think I am not there is when I am the most capable of intellectual thoughts. Because being unable to move frees my brain up for thinking. If you want to see me at a time when I can’t do intellectual thoughts very well, it’s far more likely to be a time when I’m moving but immersed in the sensory side of the world. At none of these times do I stop being a person who ought to have the same right to be alive as any other person.
Some autistic people, like me, live in a constant state of flux between all these different states. Other autistic people’s brains make a sort of bargain. Where they get to keep abilities more permanently, but at the expense of other abilities. I frequently meet autistic people with far more intellectual skills than I have, who find it difficult to move voluntarily, at all, ever, and can only type with the greatest of difficulty. That’s because their brains have sacrificed movement skills for intellectual skills. That’s a very common pattern, yet they are often the autistic people believed by others to have the fewest intellectual skills of any of us. That again shows that people equate intellect with movement.
Often I have to do something similar but more temporary. I write a lot of my writing when I’m unable to move. And I’m unable to write easily when I can move. So I do a lot of my writing frozen. Or in the past, letting my body run around the house on autopilot with no conscious control. It doesn’t do that much anymore because of neuromuscular problems. But either way. My brain sets up all the ideas and concepts at the times when I look the least intellectually capable. And then, at the times when I’m able to type, I wait for an opportunity for all those stored words and concepts to come tumbling out my fingers, but am often unable, at the time, to do any complex thinking. Because I’m using all my cognitive abilities on certain aspects of movement and perception.
A lot of what autism is, is trade offs between one ability and another, because of a brain flooded with information and incapable of handling all of it a once. So we handle a tiny bit and make trade offs between one skill and another. Some of us make permanent trade offs, some of us are constantly switching, and some of us go in between somewhere. Some of us also go from one set of long term tradeoffs to a different set — depending on what set is which and which skills people value, this will get seen as either progress or regression, regardless of what is actually happening. My brain once made some ultimately wonderful changes in my life, setting firm limits about what tradeoffs it was willing to accept. But because speech was one of the skills on the chopping block, other people choose to call it a regression. Because speech is that important to them, even though to me it’s a peripheral skill I barely notice in the scheme of things other than for its capacity to cause pain and wreak havoc on my other abilities.
Dementia is another condition that people love to use for the way people see you as nobody there. If I survive to old age I have a pretty high risk of dementia, because of the amount of time I’ve bashed my head into things. So I think about it a lot. The prospect of dementia itself doesn’t scare me that much. In fact, to me it would signal that I survived long enough to get it, which would amaze me if it happened given some of my other health problems. But what scares me is how other people would react to dementia.
I’ve spent a lot of time around people with various kinds of dementia. I can tell they have a lot of cognitive problems. But I can also often see that they understand more than people give them credit for. As my particular sort of autistic person, whatever that is, I’m very attuned to subtle movements that indicate reactions to one’s environment. And I see those movements all the time in people with dementia. Movements that show they are processing information about their environments. Movements that show they are thinking. Sometimes I can see the gears turning in their heads as they think about things and try to come up with responses.
But there’s that ridiculous thing about speech and movement again. Other people are not attuned to those little movements that give off information about what you’re seeing and thinking. They’re only attuned to things like whether the person can talk, and how fast they react. And how fast they can talk. Many times I’ve seen people with dementia left behind in conversations. They want to say things. They are trying to say things. But the thoughts are moving to words too slowly. By the time they come up with the words, everyone has moved on, and their out of place words aren’t even seen as having to do with the prior conversation. They’re used to prove the person is disoriented even if they’re not. I was not surprised when they did studies and found people with dementia who can’t talk at all have their cognitive abilities underestimated constantly. Because people use speech and a limited set of movements as proof of whether someone is thinking or not.
It’s funny how doctors and nurses usually seem to overestimate their ability to detect consciousness, and lack of it, in their patients. Just as their ability to detect our quality of life is severely limited, so is their ability to detect consciousness.
If you want real information about how hard it is to decide whether someone’s conscious or not, talk to a good anesthesiologist. It’s their job to mess with consciousness so that people won’t suffer during surgeries and invasive procedures. They’re very good at it. But even the best ones can’t guarantee that someone won’t be conscious. In fact the best ones will tell you they can’t ever guarantee what gou will and will not feel. Consciousness is a slippery thing. We can’t even define it, much less measure it, much less use it to determine who is really human and who isn’t.
Yet to many people, consciousness is something they think they can see. And they think that so intensely, that they refuse to consider how unaware they really are. I have had people decide that I had no awareness or understanding of the world based on nothing but photographs. I have also had people decide that I had awareness and understanding of the world and tons of abilities I might not have had at that moment, also based on photographs. I’ve had to prove that I can write, that I can understand things, that I am a real person, over and over again, based on people’s faulty understandings of me. And yet, there’s still the ones who say “She has the cognitive functioning of an infant,” in front of me. And others who say I’m not delirious when I’m barely aware of my surroundings at all. It goes both ways because people overestimate their ability to judge what consciousness is and who has it. Something even philosophers and anesthesiologists, who make their work in that area, can’t agree on.
One reason I can’t stand the (extremely white middle class male able bodied etc.) skeptic community, is because they make these judgements about disabled people all the time. They say it’s impossible that people judged to have a profound intellectual disability could possibly communicate, entirely based on their judgement of what a profound intellectual disability means, and how you measure it, and what such a person could do. They don’t even think about their biases when it comes to disability of any kind pretty much ever, and they push my buttons a lot. They are sure confident about consciousness in a way nobody who studies it actually is. And they always judge in the direction of people lacking consciousness.
The other odd thing about consciousness is that not all thinking is conscious. I’m not talking about a Freudian idea of what is subconscious. I am talking about how the brain works. A lot of thinking and learning takes place in more parts of the brain than people know. And a lot of thinking and learning takes place on levels that we aren’t aware of. So it’s possible to have someone where the ability to be aware of things in the way we call cosnciousness, is impaired or absent, yet they are still doing things and responding to their surroundings.
I experienced that in delirium once. I slid from not conscious, to sort of conscious. And I felt this weird sensation but couldn’t place it or even consider placing it. I woke up all the way and my arm was trying to pull out my Foley catheter. I was horrified.
But in my view, the person I was when I was pulling on the catheter, before I woke up, that was still me. That was still a person. Just as I was still me before I woke up… I have no idea what happened previously. But I woke up to a group of men trying to pry my arms and legs off the rail of my hospital bed. I had a death grip on the rail and was having none of it. I still don’t know what happened to get me to that state. But I don’t think I’d have been any less real, any less me, if I’d stayed less conscious. And people forget that, they think their conscious thoughts are all they are. But thoughts are built on a huge foundation of thinking and learning that is purely instinctive and either not conscious of less conscious.
But consciousness is such a strange thing. I think part of me was still conscious during those times, just not the kind of conscious where I can remember. I think every part of my body has its own sort of consciousness. And not in some sort of fluffy metaphysical way. But rather that cells think and groups of cells work together and other things like that. So it’s not all in the brain and it’s not all in one part of the brain. I came up with this on my own, but I found out it’s considered one valid philosophical theory. I’m not big on theories though, or long names with ism at the end. It’s just now I experience things. I am more than my forebrain and more than my brain and the part of me that thinks with my brain is not the only part of me that wants to be alive, strives to be alive, in its own way.
A lot of medical professionals find all these ideas grotesque. They find the entire idea of disability grotesque, and cognitive disability perhaps the most grotesque of all. When I say cognitive disability, I mean all cognitive disabilities not a substitute for intellectual disability. It also means autism, learning disabilities (both UK and USA), dementia, delirium, brain injury, etc. Anything affecting thought.
I think it might especially bother doctors, who often prize their intellectual skills, that there exist people who have trouble in all those areas and are still alive.
But it’s not just cognitive disabilities. To many of them, all out lives are grotesque. Not just the most extreme cases but most of us at all. Many people even think that it’s bad that medical science has advanced enough to keep lots of people alive who would have died in the past. Even though that includes themselves as often as not, they don’t think about that. They only think it about those of us who are disabled in some way. Especially those of us who are “kept alive” by some “artificial” means: Tube feeding, respirators, dialysis. People think machines are grotesque, that we are grotesque, that science has gone too far and invaded us and made us something less than human.
Disabled people are usually grateful to be alive. We vary on our opinions of various machines, but we generally are glad to have the chance to exist regardless of our other capabilities. But every step of the way we are pressured to accept death instead. Told we are selfish. That we are disgusting. People tell us. They tell our families. Our lives will never be the same. We should die. We should die. We should die.
They repeat it like that. And what people hear over and over, we often come to believe. It can be hard to resist such pressure. Especially if we are already sick or disoriented.
This is in a world where, in most cases, it’s not legal to just up and kill us in most circumstances. Yet it happens all the time, by pressuring us not to accept medical treatment necessary to save our lives. We are pressured to be DNR, or DNI. We are pressured to refuse or withdraw treatment. And it’s no accident that the slick ads for euthanasia everywhere in my state are paid for by insurance companies.
There is a doctor who thinks he’s doing the world a favor. He makes videos of people with severe dementia and shows them to people with mild dementia and their families. He uses those videos to pressure them into signing DNR orders. By scaring them into believing they will turn into empty husks with no person inside. Because that’s what our society believes when they see the movement patterns of a person with severe dementia. He also does videos of people with feeding tubes to try to get people not to accept feeding tubes. And I think he also does videos of people doing codes, to get people to sign DNR orders. He’s trying to get people to avoid treatment. He believes he is doing the world a favor. Really does. It’s chilling. Better dead than severe cognitive disability. He thinks that just because he doesn’t narrate his videos, that they’re impartial, that he’s not pressuring people into a decision. He’s wrong. You can narrate a video without saying a damn word.
When I get my computer battery working again, I am going to make a video about how wonderful feeding tubes are. The world needs that. My feeding tube is my life line. You can’t put a price on life.
What terrifies me is that I’m in such a minority. That most people don’t see the problem with any of this. That they take for granted what they think they know about consciousness and cognition. That they even think physical disability is a life of such horrible suffering that people with it would be better off dead.
Disabled people tend to be just as happy — or unhappy — as our nondisabled counterparts. But when we are unhappy everyone blames our disability. Sometimes we ourselves blame it. When really we might just have depression. Of we might have had a huge loss in our life. One woman applied for assisted suicide right after she lost her husband, I think there was a death in the family, she was grieving, and suddenly, after a lifetime of being okay with life, she wanted to die. Instead of accepting that she was in a state of grief and possible mental illness, people championed her right to have help killing herself. She didn’t have a terminal illness. She just became suicidal. In a way nondisabled people become suicidal every single damn day. And yet because she was disabled, instead of helping her live, people wanted to help her die. That’s how messed up things are. Many times disabled people asking to die, cite things like living in crappy nursing homes that could drive anyone, disabled or not, to suicide. Yet our oppression is seen as inevitable. Our depression and suicidal thoughts are seen as coming from being disabled, as natural if you’re disabled, as anyone who was disabled would think that way. Rather than as depression, as PTSD, as grief, as any of the other things that drive ordinary people to suicide.
And every time a disabled person blames their disability for their suicidal thoughts, nondisabled people pick up the idea that suicide is the natural response to disability. Often nondisabled people who themselves are terrified out of their mind at the idea of becoming disabled. But actually if you take into account an adjustment period, disabled people tend to be as happy or unhappy as nondisabled people in the same situation. Because happiness doesn’t work the way people think it does. Sometimes our quality of life gets rated lower. But you usually find that such tests of quality of life are usually surveys where they score you as having automatically lower quality of life based on what you can and cannot do with your body. Meaning it becomes circular reasoning. You have lower quality of life because you flunk a test of quality of life, that assumes that people like you have lower quality of life. It’s ridiculous but practically nobody questions it.
And practically nobody questions any of this stuff. I hate hearing about it because I know it’s a threat to my life and the lives of pretty much everyone I love. I hate hearing about it because people don’t question their own assumptions about disability, especially cognitive disability. I hate hearing about it because people get all excited about giving us the freedom to die when we don’t even have the freedom to live. When they are already killing us in so many ways, when no safeguard is good enough, and they want to make it easier.
And it’s not that I don’t understand why a person truly at the end of their life wouldn’t want to be able to die easier. In a lot of places this is possible already, but people want to make it even easier. But that means people are pressured to die faster so their children can collect the inheritance. And all sorts of other abuses. No safeguard can stop that. And it also means that disabled people can die easier, even if we aren’t considered terminal. Because it’s easy to nudge disabled people into that territory. Non terminal disabled people have always been part of the ones covered by the euthanasia movement no matter how the laws are framed. And the insurance companies laugh as people pass these laws and call themselves progressive.
Recently I went through hell trying to get a feeding tube. I would have died without it. People knew I’d die without it. And they did everything in their power to convince me to die. I had pneumonia already. I’d had it five times in three months. I was getting weaker. Without the tube, I would have continued losing weight from not being able to eat, continued getting pneumonia from stuff in my stomach coming up into my lungs. And I would have died one way or the other. It may have happened by now. I was getting worse and worse.
I’m pretty sure if I’d gotten pneumonia bad enough, they could have declared I only had so much time to live. And then it would have been a matter of pressuring me to accept death even faster. And faster. And with all the pressure I might have caved. Especially while severely ill, especially if delirious. And then what then? That’s how easy it is to kill off a disabled person already. We don’t need it easier. We don’t live in a perfect world where these so called freedoms don’t come with a horrible price for most disabled people. And I won’t ever agree with a law that allows people these so called freedoms when people don’t have the freedom to live as we would want. Such bills dovetail wonderfully with the austerity measures happening in a lot of countries right now. The oppression of disabled people is rising and so is out rate of suicide attempts. We don’t need it easier to die. It’s already too easy. It’s so hard to stay alive.
But the part I just can’t stand. I can’t stand it. Can’t stand it.
Is the part where I suddenly look at myself and see how other people see me and it’s terrible and frightening.
They see me as a list of my impairments in the most pity invoking language and idea possible. Bedridden. Wheelchair bound. Tube fed. Suffering from endless pain that has never gone away a day in my life. Nonverbal. Cognitively disabled. Constantly nauseated. Constantly ill. Progressive diseases. Motor impairments. Neuromuscular conditions. Needs care in every area of life.
They make it as ugly as they possibly can. That’s who they see me as. And they can’t see all those things alongside being a real person. Even one of those things causes them to look down on me, but all of it, and I’m grotesque and pitiful maybe but not a real person.
They don’t see that I’m an artist, a writer, a thinker, a film maker, or anything like that. They don’t see any depth to me. They don’t see my personhood or the ways I express it. Even if I wasn’t any of those words that mean I was doing something. Even when I can’t be any of those things. I’m still a human being. Because the heart of who we are is about what we are, not what we do.
Once, based on pictures, a man talked about how he’d never want his daughter to be like me. He said I was unable to sample the richness that life has offer. He hadn’t even met me. People make that judgement of me all the time. And my response has always been this.
The world is infinitely rich. Nobody can sample all of that richness. No limitation can limit it enough that you have any less of it than any other person. It’s everywhere. It’s embedded in everything inside us and around us. No matter how small the area of the world you are aware of, it’s impossible to avoid being utterly saturated with it. And no matter how much of the world you’re aware of, it’s impossible to get more of it than another person. The richness of life is sort of like love, it’s infinite in the amount that a person can experience, and the more you have, the more is there.
And while some people would disagree with me, there’s a spiritual element in all this. Nobody is in a position where they’re too severely disabled to have a spiritual life. You don’t get to a certain level of dementia and suddenly their spirituality is gone. Because its not dependent on how much ability you have at what. That sort of thing just exists.
And no, I’m not a Christian, and no, that’s not why I believe any of these things. I get so sick of people assuming that if you believe any of the things I believe about death and disability, you must be a conservative Christian. Many disabled people agree with me because they’re disabled and they have life experiences that say the same things to them that mine do to me. They include atheists, agnostics, Christians, pagans, Jewish people, Muslims, Buddhists, Hindus, and just about every religion and lack thereof that is out there. Because, surprise, disability has nothing to do with what religion you are, and viewpoints like mine usually come from a certain disability experience, not religious beliefs.
My viewpoint doesn’t come from a fear of death, either. I’m to afraid of death. I actually see death as a rather friendly thing that will welcome me into rest, as my body and soul dissipate and become part of the rest of the world, where they came from. If you need to ask, that’s my view on death. It’s even a rather beautiful thing in its own way, because it represents how everything is part of everything else. I have enough close experience to not fear death itself. But I know I only get one chance at this life. And I want to make the most of it. And I don’t want to be killed for being disabled any more than I want to be killed for being a lesbian. But in the society I live in, that kind of hate crime against disabled people — pressuring us into dying by not accepting medical treatment, for instance — is in many cases perfectly legal if you pull it off correctly. And that, that scares me. Just because I don’t mind dying, doesn’t mean I want to die before my time because some jerkass doctor wants it that way.
So yeah. Whenever I catch a glimpse of myself or my friends the way most people see us, I feel like throwing up. It’s so easy to kill us. It’s too easy. And it starts with that thing where we become grotesque, lesser, and scary, because we are disabled, or especially cognitively disabled. People fear our lives and that shifts nicely into wanting us dead which has real consequences for al of us. And it’s terrifying when people think we have no mind, and when they think that means we aren’t people.
We are people, and we think, and we are real, and we have lives, and those lives contain the same richness and beauty as anyone else’s life. And to see us otherwise, to see us as less than people, that’s the first step in killing us. Which is why I can’t bear to see it sometimes. And yet all this is invisible to the people who see us as automatically pathetic or unpersons.
HELL-BENT ON HELPING:Benevolence, Friendship, and the Politics of Help
At the end of the twentieth century, the most significant barriers preventing individuals with labels of disability from fully participating in schools and communities are still attitudinal. Specifically, our society still perceives those with disabilities as perpetual receivers of help. Descriptors like “less fortunate” and “needy,” telethons, and tear-jerker journalism all continue to perpetuate this view.
Unfortunately, there is still a distressing tendency in some schools to base interactions with students on these broader societal misperceptions, despite a sincere desire to end the isolation experienced by so many children with disabilities. Friendship clubs and buddy systems based on stereotypical beliefs risk perpetuating prejudices and myths and even exacerbating the problem.
Obviously, it is essential that students be provided with opportunities to interact. Formalized friendship and support circles may be effective ways to building relationships. However, an over-emphasis on the “helper/helpee” relationship can easily skew the delicate balance of giving and receiving that is the precursor of true friendship. It is critical, then, to regularly and carefully examine the nature of the interaction we facilitate and the attitudes that inform it.
Consider the following scenario:
Four third grade children from a local elementary school have come to speak to a room full of adults. They’ve been invited, with their teacher, to talk about friendship. Actually, three of them are there to talk about their friendship with the fourth child. Children in third grade make friends all the time. We ask ourselves, “What could possibly be unusual enough about this situation to bring these children here today?”
What’s unusual is soon apparent. Three of the four children in the room can speak, one of them can’t. Three of the four children in the room can walk, one of them can’t. The three walking, talking children are here to tell us about their relationship with the young man in the wheelchair.
Adults in the room begin to smile as the first classmate talks. Approving nods accompany the child’s words, “He’s different on the outside, but inside he’s just like me.”
The conversation whirls around the boy in the wheelchair as he scans the room, looks at his communication board and sometimes watches his classmates.
“We take turns being his buddy,” offers one young girl. “Everyone has a turn.”
As the children talk and answer questions, it is interesting to watch the interplay between the subject of the discussion and the girl to his left. She has one arm around his shoulders, and in the other hand holds a washcloth. She wipes his mouth repeatedly. At one point, he appears to lose patience and struggles a bit. One hand jerks forward. His friend seizes his and holds it still. He makes a noise of clear irritation, and attempts to pull his hand free.
His classmate smiles fondly at him, continuing to restrain his hand, and wipes his mouth again.”
Is there anything wrong here? Not much, we might say. A nine-year old who in other times or other places might have been attending segregated classes and a group of nice third-graders together are learning a few lessons about difference and similarity.
We might even agree with comments made by audience members. We heard the boy’s three classmates being called “the hope for tomorrow” and “exceptional kids”. All over the room, adults were beaming. After all, this relatively new phenomenon seems to hold out some hope for an end to discrimination and distance between those who have disabilities and those who do not.
However, as the presentation continued, it became increasingly apparent that while both adults and children thought they were talking about friendship, much of the discussion taking place was really about help. While there was undeniable warmth between the children, most of the comments and non-verbal interactions reflected a “helper/helpee” relationship, not a reciprocal friendship.
When initially attempting to foster relationships between children with disabilities and their non-disabled classmates, it is common practice to have children “help” the new student. Such help may take the form of physical care, “keeping company” during breaks, or schoolwork assistance. Help giving contact can reduce an initial sense of strangeness or fear, and can, if carefully done, lay the groundwork for friendship.
Clearly, there is nothing wrong with help; friends often help each other. However, it is essential to acknowledge that help is not and can never be the basis of friendship. We must be careful not to over-emphasize the “helper/helpee” aspect of a relationship. Unless help is reciprocal, the inherent inequity between ‘helper’ and ‘helpee’ will contaminate the authenticity of a relationship.
Friendship is not the same as help. Attempts to include children with disabilities have sometimes blurred this distinction. Friendship clubs are often really assistance clubs. For example, how much time is spent on the logistics of help? “Who can take Jane to the library on Monday?” “Who can help George eat lunch on Friday?” Still more insidious, how much time is spent bringing George’s classmates into a “mufti-disciplinary team system” to analyze the effectiveness of his current behaviour management plan?
Professional caretakers are made, not born. How does it happen? Put a third-grade “helper” next to a third grade “helpee”. Add a sizable amount of adult approval, and there you have it.
It is not entirely thrilling that kids who take part in friendship circles during school go on to careers in human service. Don’t misunderstand. Lots of wonderful people choose this profession. However, an unfortunate result is that lots of children and adults with mental and physical handicaps have legions of professional caregivers, but no friends in their lives. We must guard against merely creating another generation of “professionals” and “clients”, with the former group seen as perpetually competent, and the latter, perpetually needy.
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