Fear of disability is not what it seems.


Two nights ago I had a long conversation with a friend.

She was in bed because she’s got a pressure sore forming on her butt. I was lying on a mat on the floor because I couldn’t hold my body upright and think at the same time.

We were talking about the stuff that normally gets called disability, or impairment, or whatever the current term is. The differences in our bodies, that are medicalized, and defined as horrible fates worse than death and so forth.

We were talking about our total lack of fear in the idea of acquiring any particular currently-pathologized condition.

She talked about how “chronic, intractable pain” is an everyday reality for her, and it’s only going to get worse with time. I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity. I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.

I started laughing, because that seems like an absurd idea to me. My friend said, sarcastically, “Oh, but you’re laughing. If you’re laughing, you can’t be in any pain.”

Then we got into migraines. I’ve had one for a few years straight now. My friend said, “It’s documented that people sometimes kill themselves over migraines, so that’s got to be considered one of the nastier forms of pain.”

My friend recently had a knee injury and was unable to get out of her wheelchair at all (normally she can stand for brief periods) without extensive assistance. She talked about how that isn’t a particularly awful thing in and of itself. She also once went through extreme spinal surgery and only got a day’s worth of pain drugs afterwards.

I freeze in place on a regular basis, sometimes to the point where even my eyes are not under my control, right down to pupils staying at a fixed, large size and my eyes not moving at all. I know very well what it’s like to have zero voluntary movement, and total awareness of surroundings, and I’m not afraid of it.

I also know what it’s like to not comprehend anything going on around me, to be unable to form what most people consider thought (although I think their definition is far, far too narrow to encompass all thought), to “lose” extended amounts of time because things were not encoding into memory, to understand things only on a perceptual level with no abstraction or what non-autistic people would call “comprehension” or “cogitation”, to understand things only in the moment and not have a continuous memory going on, to understand bits and pieces of things on bits and pieces of different levels, and so forth. I know what it’s like not to even be able to put together the intent to “understand” things in a relatively typical way, because the knowledge of that intent simply isn’t there, all that “makes sense” is sensation.

I even know what it’s like to have seizures every few seconds. And from the effects of various supposedly “anti”-psychotic drugs, I know what it’s like to hallucinate and lose touch with reality. I know what it’s like to vomit several times a day, or continuously for several hours in a day. I know pain so intense that I can’t move, and can’t think of anything other than pain.

These are things I know. I know them short-term, I know them long-term. I know them as states that I am able to partially exit for certain periods of time, and I know them as states that I am mandated by my body to stay in until they’re over, if ever. I know the extreme fluctuations in all of these areas that I go through daily, and the gradual moving from one area to another that takes place over time. These things are or have been significant parts of my life. My friend and I talked about all these things from my life, and all these things from her life. Between the two of us, we have internal-body experiences that cover a pretty wide range physically and cognitively. Neither of us are afraid of physical or cognitive disability, of pain, of confusion, of immobility, or of illness. We’re not particularly afraid of even the things considered the most devastating.

There are things we both fear, though. And they have nothing to do with the internal experience of any of these things.

I fear being put in an institution, of any kind, whether a large institution, a group home, a nursing home, or a psychiatric ward. I fear boredom because people might assume I’m not there and park me next to a blank wall for years. I fear people not bothering to prevent or treat things like infections and pressure sores. I fear people who claim to love me deciding to kill me to spare me the unendurable suffering they imagine I am experiencing. I fear bad staff. I fear being assumed dead or unconscious when I freeze (this has happened). I fear not being given a workable communication system when one is available. I fear being treated as a non-person.

The trouble a lot of people seem to have, is they can’t distance these legitimate fears, from fears of the state of being itself. They act like the above are a natural consequence of being configured in a certain way, and that the best way to avoid that is to prevent at all costs that configuration, instead of preventing at all costs those things from being able to happen to people.

My friend and I are not afraid to acquire various conditions that are currently pathologized. We’re aware we’re likely to acquire at least some of them within our lifetimes, even if only in old age. We’re afraid of discrimination, including deadly forms of discrimination. The solution here is not to fix our fear or “acknowledge our feelings”, but to fix the problems that cause legitimate fear.

The trouble I have in talking about these things, is that for people who do not adequately separate out how a person is from how they are being treated, this sort of thing often results in responses like “Oh how horrible, I or my child or someone else is in all this danger, this is a horrible horrible fear, how can we fix me or my child or whoever until they won’t be in all this danger?” Wrong answer. Work to fix the danger, or you will have solved nothing at all except temporarily your own emotional state.

The trouble is, people make decisions, including policy decisions, based on these nebulous fears of being disabled, rather than the real and concrete situation that disabled people are treated like crap. People actually believe that their feelings on this are neutral in nature, and of course, since they are feelings, impossible for anyone to validly question. But these feelings come from somewhere, and without looking at disability as a political thing rather than an issue of personal individual suffering and uselessness and whatnot divorced from any context, we will continue to have awful things happening to us all the time, and people will continue to fear becoming like us.

What started the conversation was a person we know offline who has acquired a new condition over the course of the time we have known her. She has always been extreme in both her ableism and her refusal to even contemplate thinking politically about disability, more extreme than most people. Her entire identity has been tied up in the work (paid and unpaid) that she can’t do anymore. And she’s currently mired in some of the worst kinds of self-hatred because she appears to have transferred her bigotry towards disabled people (which she never acknowledged as such, and would probably be insulted by that description, but it’s true) to herself, and is busy thinking of herself as the useless burden on her family that she thinks of disabled people as in general. And she does not even have the solace of understanding disability in a broader sense than her own feelings (that she believes come out of nowhere and are therefore not things she can change), because while she is capable of thinking politically in that way, she fears it and refuses, believing it would make her miserable. There’s nothing I or anyone else can do about this, but I hope one day she’ll realize that the kind of thinking she fears would actually both be closer to reality and make her less miserable and fearful over the long run.

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

12 responses »

  1. “I talked about going twenty years without a diagnosis of chronic pain that resembles central pain in its nature and intensity.I talked about how people who’ve been in much less pain for much shorter periods of time have tried to tell me I don’t understand pain.”

    Can one person’s pain be compared with that of anothers?

  2. To some degree, yes. At least, trying to tell someone who’s had twenty years of untreated pain of a kind that’s one of the more severe kinds possible, that they don’t understand pain, is not the best idea in the world.  Backing it up by saying, “I’ve had a few years of [insert kind of pain that is much more moderate] and therefore I understand pain and you don’t,” is an even worse idea.

  3. To be misunderstood. And to have those faculties that are well within one’s posession to be usurped out of another’s wish to control others. To have one’s life and livelihood confiscated by another.

    The money is in fields that people who value wealth and power want to be a part of–in playing doctor, in pretending to do science. Not in facilitating access or in being a paid assistant.

  4. Definitely those are other things that I’m afraid of.

    I’ve seen what happens to people with various forms of what’s called “dementia”, and I don’t mean the way their minds change. I mean the way people around them start making decisions for them well before they have to, treating them like because their minds are working differently that they have no minds, treating them as totally incompetent, etc. Even one woman I met had a guy trying to be seen as “her best caregiver,” apparently because she was rich and he wanted to inherit her money, meanwhile he treated her and anyone who stuck up for her like utter crap.

    She had many more faculties than anyone was willing to look at, and in particular nobody ever let her communicate. You could see her forming words, and people would not wait, they would step in and say something for her, or even contradict her and tell her she was misremembering, and then other people would confirm that she was remembering something perfectly.

    But in another setting I remember reading a “disability advocate” bragging about how he’d signed his wife’s decision-making power over to him (by tricking both her and the notary) when he learned she had some kind of “dementia”, and then starved/dehydrated her to death when she stopped being able to talk. So there’s definitely worse than even the above.

    All of those sorts of things are what need to change. People will always be disabled, it’s a matter of disabled people, somehow, having enough power and respect that these things happen to us less often.

    (And “dementia” is something I’m at higher “risk” for later in life because of the amount of head-banging and other blows to the head I’ve had, so that prospect is something I’ve thought a lot about, as well as trying to figure out how to make the world a place where I’ll be able to get assistance at home and not in a nursing home should that become the case.)

  5. A friend / former employer has a form of muscular dystrophy, meaning he expects to spend the last ten years of his life with only the strength to lift a pencil, slowly dying by suffocation. He has friends with similar progressive illnesses and sometimes he thinks that life will not be worth living once he as lost as much ability as some of them have. Then he thinks, “When you have lost so much, life might be all you have left; and that’s when it becomes especially precious.”

    This beautifully expressed idea has touched me deeply and enabled me to reconsider the complexities and mess around end of life – because we will ultimately all die – with more openness. I would prefer death to be neat and tidy and expeditious, especially my own; I wish to go gently into that good night; I want to believe that the struggle to stay alive is merely an irrational fear of death that can be overcome by right thinking. (And I say all these things having struggled for years to stay alive when depression and the attendant urge to suicide were ever-present. Struggled with gritty determination and – fascinatingly – no sense of irony.) My friend’s observation has allowed me to contemplate my future clinging to my last scrap of self without pity or fear, and to be more accepting of others doing the same.

  6. Yes, the ‘fear of death’ something is one I often get told (told that must be my motivation in many of my views on these things).

    I don’t think there’s actually anything to fear from death. However, I also don’t think there’s anything to fear from living in a body that isn’t totally perfect (by someone’s standards) and comfortable. That’s not an experience I want to cut out from my life, if it’s supposed to be part of my experience.

    But further than that, I’ve had more than one person I know get easily treatable infections and have doctors refuse to treat them because “a life like that isn’t worth living”. I’ve experienced attempted murder at the hands of medical professionals. And I frankly don’t want to give them one more reason to declare my life or anyone else’s not worth living.

    On a purely pragmatic level, even if I accepted that there was a point past which I wouldn’t really want to be alive, I would far rather live out whatever suffering is necessary at that time far in the future, than give people ammunition that would allow them to kill me right now and deny me any future. Because that’s what I’ve seen happen over and over again. I don’t want to make the jobs of killers any easier by telling them there’s a line I draw somewhere (that they can then easily concoct reasons to say I have passed).

    But also, there’s a woman who wrote a book I really need to get my own copy of one of these days. She expressed my sentiments on this whole thing perfectly as well. She grew up in an institution, she could only move her eyes up and down to communicate, and the doctors at her admission had declared her “profoundly mentally retarded” and not passed on the information about the eye movements. She grew up basically in a “mat ward” (a ward full of people on beds or mats). The only person she could communicate with at all was someone who was positioned in a bed next to hers some of the time, who shared the same communication system.

    At any rate, she said that there was a kid there who died of unshunted hydrocephalus. She said something like, “Some people would say that a life like hers wasn’t worth living anyway, and that she’s better off dead. But so many people have said that about my life, that I will never pronounce anyone’s life not worth living.”

    That’s how I see it. I don’t think that it’s possible to take an entire kind of life and declare it unlivable, and I don’t think it’s possible to know beforehand that you’d find a certain kind of life unlivable.

    So, I’d far rather have a society that didn’t focus on sitting there drawing imaginary lines in the sand about livable lives (and putting up impossible-to-enforce ‘safeguards’ about those lines), and instead focused on actually assisting people to live however they are going to live.

  7. This comment is a bit disjointed, so going in bits and starts, trying not to say anything that isn’t an accurate representation of what’s going on in my head:

    I have gone through my own phases of having to distinguish fear of a certain medical condition itself from fear of how people with that medical condition are treated, both in society as a whole and by the medical industry itself. I can say with earnestness that I am not afraid of experiencing anything psychologically that is labeled a mental illness and pathologized by society. I’m much worse at handling actual physical illnesses, however– not hospitals or how you’re treated by others but the physical feelings themselves. I don’t handle them very well, and I’m not sure what I would do if placed into one chronically, and I worry about whatever I might do and say in that state being taken as a global proclamation of how all people with the same condition feel or want.

    There are people who are able to function with medical problems I can’t function with– I’ve seen it in my family, the difference between myself and some others in that regard, seen others keep working with conditions that cause me to lose all willpower to get out of bed. The only life I would ever consider myself to have the authority to pronounce unlivable is my own, in the sense that I find it unlivable by me. And this disturbs me, somewhat, because it has occurred to me that I may, at some point, in my own life, for whatever reason, come to feel that my own life is unlivable for me, when another person put in the same situation might not be deterred, and be able to keep going under something that I wasn’t strong enough to endure. I’m not sure if this is something I should seek to rectify, and I’m not sure how I could– which is not to say I don’t think I could ever change my beliefs on this; I just honestly have no idea how.

  8. My beloved and I have signed the standard living wills where we authorise one another to make decisions on our behalf if we are unable (or judged unable) to make our own. What fascinates me is that the wish declared in these standard living wills is for the expeditious end. Someone who wants to make known their desire to live whether or not anyone around them thinks it’s an attractive prospect has to draft their own statement.

    And yes, we have each made known our preference for the expeditious end. However, I have made it clear to my beloved that I am unlikely to be able to make anyone’s end of life tidy. End of life is likely to be distressing and fraught with ambiguity. If called on, I will make the best decisions I know how, taking into account a depressive temperament which makes attachment to life ambivalent and often sullen.

    Catholics have a beautiful and well-thought out approach to respect for all human life that is welcome in a world fearful of mess and disorder, but it comes with its own baggage. I’m firmly convinced that nobody who feels unable to raise a disabled child has any business having children at all, and the whole business of prenatal screening sets up disabled children to be medical errors rather than part of the human expression. Catholic philosophy welcomes all life, which is great. But all women need access to free and safe abortion. The Catholic welcome of all life doesn’t allow for that.

    The Catholic answer to suffering is compassion and companionship. These are essential to life and death with dignity, yes. They complicate the impulse to turn to euthanasia to relieve distress (whether of the subject or the people responsible for her care), yes and thank goodness. But if morphine will ease the pain of terminal cancer it’s cruel to withhold it from someone who is both suffering and has let go of their attachments to life. The Catholic philosophy doesn’t allow for any intervention – like high doses of morphine – that might hasten death. Even the death of someone who is ready to go.

    So while I welcome the Catholic analysis of these issues, I find it simplistic. Just as I find the desire for order and tidiness simplistic.

  9. Actually they do make pre-written ones for people who want the “Keep me alive at all costs” version.

    I got mine here:


    And I have two people on it, one of whom worked for Not Dead Yet, so I think I’m pretty safe there presuming that the hospital or hospice doesn’t try to override our wishes (and they might, it happens all the time). I’m also planning to order the Not Dead Yet dog tags that have just gone back on sale.

    I’m not a Catholic, I am a Quaker, and Quakerism has no standardized answer to the issue, although many Quakers (at least of the branch I’m from) lean towards anything that sounds vaguely left-of-center without necessarily thinking about it, so many are pro-euthanasia without examining the ableism behind the majority of that stuff.

    I’ve wished for a long time to write about my views on abortion, because they are neither the simplistic pro-choice stance nor the simplistic pro-life stance, and I get really tired of hearing the disability rights critiques of abortion get ignored by both, as well as the feminist critiques of total anti-abortion stances getting ignored by those who are pro-life. Not to mention the idea that a fetus is a non-person would be problematic to me even if I totally accepted all abortion for all reasons unquestioningly. But it’s very hard to get it all together in words.

    To me there’s a clear difference between taking extra morphine for pain that might hasten death as a side-effect of taking it, and euthanasia. I’ve never actually understood why people confuse the two. Drinking lots of alcohol can potentially shorten the lifespan too, as can many kinds of necessary medical treatment. Denying pain meds to someone who wants them seems barbaric to me.

    But a lot of people seem to insert the “denying pain meds” line into a discussion of a very different issue, which is who decides who lives and dies at any given time. My personal stance is that if a person wants to commit suicide, or refuse treatment, that’s already a feasible and legal thing to do, even if I disagree with it.

    But at the same time, there have been people who have changed their minds after writing such documents, or who never realized what the documents were going to be used like. Like a woman who actually was restrained to prevent her from getting out of bed to eat or drink, because those were considered “medical treatment”, and she’d had a stroke, couldn’t speak, and was considered incompetent to decide whether she lived or died. Others could speak but were still not considered competent. A lot of people when they think of medical treatment think of very specific things, and then when they eventually need something like assistance eating, they don’t realize that might be withheld as “medical treatment”. A lot also don’t realize that by the time they reach that point, they might not mind it so much as they thought they would, and again, changing the mind is not allowed.

    Which is why I err on the side of that I might suffer a lot towards the end, because I don’t want to be cut short way before the end. (And doctors really can’t predict how long a person will live anywhere as well as they say they do.) And I also in general err on the side, legally, that people should not be in a position where the “choices” of a few people make way for the murders of many, but it’s all done under “choice” (which is, usually, how it actually works). When I think about it, it’s better some people die a little after what they consider their time, than lots of people die before their time. And I’ve seen enough of the latter to know it’s a real threat even without laws to make it easier.

  10. Yup, agree on all points. Which is why disability advocacy is such an essential part of the understanding of life-and-death issues: it’s not simplistic, it can’t be.

    The extra morphine thing… that’s actually more complicated than it sounds. In practice, “keeping someone comfortable” typically lasts hours, not days or months or weeks. So people who include it in the euthanasia discussion aren’t as off-the-wall as they seem at first.

    My grandmother was quaker, by the way; I went to a quaker school for a year and attended meeting for a few years in my twenties.

    Thank thee!

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