Category Archives: Power

There is ableism somewhere at the heart of your oppression, no matter what your oppression might be.

Standard

If you are oppressed, then you face ableism. It’s that simple.

You’re probably not used to this concept at all, so I’ll explain(1).  Bear with me, because this is quite important whether you know it yet or not.

From my perspective, there’s two main ways that oppressions collide with each other. One is horizontal. One is what I’d call vertical or embedded. This post is about vertical or embedded oppression, which very few people discuss. Horizontal oppression, on the other hand, is very fashionable to dissect in detail at the moment, and I’ll leave that to the people who are much better at it than I am.

Horizontal oppression works more or less like this: Sexism and homophobia can go together because lesbians exist, who are both gay and female. Racism and transphobia go together because there are trans people of color. Etc. The connection is a side-to-side one.

Vertical oppression works more or less like this: Sexism and homophobia are connected vertically, because sexism is embedded within homophobia: You can’t have some of the core aspects of homophobia, without also having sexism. This applies not just to lesbians, but also to gay men. Because a large element of homophobia against gay men involves comparing them to women, and applying many of the same sexist attitudes towards gay men that would normally be attributed to women. That’s where you get the idea that there’s something wrong with gay men because gay men are sissies, effeminate, possess feminine attributes, etc. They’re first equated with women and then degraded in ways that have to do with women. You can’t have homophobia minus the sexism and have it take anything like a recognizable shape. It depends on sexism. That’s the big difference between horizontal and vertical oppression. Another big difference is that horizontal oppression is symmetrical (sexism + ableism = ableism + sexism) but vertical oppression is not (sexism is embedded in homophobia but homophobia is not embedded in sexism).

Every kind of oppression is connected to every other kind of oppression horizontally. But not every kind of oppression is connected to every other kind of oppression vertically. Some kinds of oppression are not embedded in any other kind of oppression at all. Other kinds of oppression are embedded in just one or two kinds of oppression. Other kinds of oppression are embedded in many forms of oppression.

Ableism is, to my knowledge, the only kind of oppression that is embedded in every other kind of oppression I have heard of. I have my theories as to why, but they’re not relevant here. When I say things like this, people think that I’m trying to make a case that ableism is the worst kind of oppression, or that I’m trying to get in some kind of pissing contest or another with regards to whose oppression is more uniquely terrible than anyone else’s. I’m not. This has nothing to do with that kind of comparison. It’s just that some kind of oppression had to be the one embedded in more kinds of oppression than any other, and ableism happened to fit the bill.

I’m not the only person to notice this. I think I’m the first person to coin the idea of horizontal versus vertical oppression, although I’m sure there are other people who have put similar ideas in different words. But disabled people have been talking about the pervasiveness of ableism in other forms of oppression for a really long time. We have tried to convince other oppressed people that our fight is, by necessity, their fight. Generally people don’t understand what we’re saying and find ways to ignore it, forget it, or even belittle it.

But people really should pay attention when we say this. Because when you have another form of oppression embedded within your own, you can’t possibly address your own oppression without addressing the other. Not because of a horizontal connection that only exists in certain circumstances. But because of a vertical connection that you can’t possibly get away from: Your oppression would not be the same kind of oppression without that other oppression stuck very close to the center. If you’re gay and you truly want to end homophobia forever, you can’t get away from having to deal with sexism. You can’t. You can pretend that you can, but you can’t actually do it.

So now I’m going to describe some specific examples of ableism in the forms it takes when it’s embedded in other forms of oppression. These are just examples. Later on, I’ll give you some guidelines for how to spot ableism quickly and easily, and where to look for ideas about fighting it. So here are some ways that ableism embeds itself in other forms of oppression:

  • When gay people are considered to have a psychiatric disease.
  • When men’s rights activists claim that the women’s Olympics are just the Special Olympics under another name.
  • When people of color are painted as inferior and deserving of unequal treatment because their IQs are supposedly lower than white people.
  • When women’s bodies are seen as a deviant and irregular version of men’s bodies, all medical testing is done on men first and women only as an afterthought, ordinary experiences of women are considered medical while ordinary experiences of men are not, etc.
  • When eugenics is applied to poor people and people of color in addition to disabled people. (Eugenics is fundamentally an ableist idea, all applications of eugenics are applications of ableism.)
  • When black men involved in riots are deliberately diagnosed with schizophrenia and brain studies are done on them in order to pathologize them and by extension their political stances.
  • When political dissidents of all kinds (including those involved in anti-oppression work for their own groups, whatever they may be) are locked up in mental hospitals.

These may seem like scattered examples of specific kinds of treatment, but they’re not. They all have certain core traits in common, and they all combine central characteristics of their own oppression with central characteristics of ableism. Such that it literally does not matter what kind of oppression you face, you’re guaranteed to face ableism as a component part of it. You can’t get away from ableism.

You can try, of course, and many people do try. The most common way other oppressed people deal with ableism is by not really dealing with it at all. Instead of addressing the ableism that forms the core of the problem they’re facing, they distance themselves as far as they can from disabled people.

What do I mean? Take the IQ situation. Nondisabled people of color who are classified as having lower IQs than white people, rarely look into how IQ has been used to oppress disabled people ever since it has existed, pretty much. They don’t look into what cognitive ableism is. They don’t look into the self-advocacy movement by people with intellectual and other developmental disabilities and the many ways they have criticized IQ testing and the way it is used against disabled people. Instead, they try to prove that people of color don’t really have lower IQs than white people.

Mind you, that’s an important thing to prove, if it’s true. But you can’t stop at proving that. Plus, if you really do end up having lower IQs, then you’re basically screwed. Stopping at “They’re wrong about our IQ score, we’re just as smart as anyone else” leaves you vulnerable in addition to inadvertently contributing to the oppression of disabled people. Looking into how the idea of being smart got equated with having a certain IQ score? Looking into how IQ has been used against people who score low on IQ tests (for all kinds of reasons) throughout history? Looking into the general shape of cognitive ableism in general and IQ-based cognitive ableism in particular? Understanding the basics of what ableism is and how it functions – by taking a certain kind of person and saying that we’re biologically inferior and this justifies seeing us as having less value, making fewer contributions to society, and being oppressed and discriminated against?

You have to do all of that. Proving that scientific racism is actually pseudoscience is important. But understanding the ableism that underlies scientific racism is just as important if not more so. Because if you take what happens when you have one of those things and not the other? Proving it’s pseudoscience leaves you forever vulnerable to the claim it’s actually real science. Dealing with ableism means that whether or not your IQ score is technically lower than someone else’s (and if you really look into ableism, you’ll see how meaningless that question can get, because it assumes that people actually have some kind of innate trait called IQ), the core oppression will not be there. And as a bonus you’ll have contributed to lessening oppression against actual disabled people as well, rather than inadvertently contributing to ableism itself.

This will all make a lot more sense when you understand what some of those core characteristics of ableism are. And understanding what some of those core characteristics of ableism are, will make it much easier to spot ableism within your own oppression. I pretty much guarantee that as soon as you understand the basics, you will start seeing it in places you’d never expected. So here are a few very simple aspects of ableism that you can spot within other kinds of oppression:

  • Any time one group of people is considered biologically or psychologically inferior to another group of people, and unequal treatment or oppression is justified on that basis, you’re dealing with ableism.
  • Any time you deal with eugenics, you’re dealing with ableism. Whether you’re dealing with “pure” eugenics aimed at disabled people in particular, or the more common situation where it’s intermingled with race, class, ethnicity, criminality, and other real and purported traits. You’re probably used to hearing of eugenics in terms of racism, classism, or anti-Semitism, but eugenics originated in ideas about disabled people and those ideas were then applied to all these other groups.
  • Any time you deal with medicalization (including psychiatric medicalization), you’re dealing with ableism.
  • Any time people are compared on the basis of what they can and cannot do, and that comparison is used as the basis for viewing or treating them differently, ,particularly in a bad way, you’re dealing with ableism.
  • Any time you’re dealing with “scientific” proof that a group of people is inferior to another, there’s a really good chance you’re dealing with ableism. If the “science” is couched explicitly in terms of medicine, biology, or psychology, it’s almost definitely ableism. So basically, if you hear that your oppression is justified on “scientific” grounds, perk your ears up for ableism, you’ll probably find it.
  • Pretty much any time you’re dealing with a situation where one sort of person is given access to part or all of a society, and another sort of person is barred from that access, and it’s justified on the grounds of ability in some manner, it’s ableism.
  • Any time your oppression is framed in terms of people like you being sick or having a medical problem for some kind, there’s ableism involved.

Keep in mind that for all of this, it doesn’t entirely matter whether the purported sickness or diminished ability level is real or not. The ableism is going to be there whether a person is actually possible to classify as disabled, or not. This is one reason that disfigurement is considered a disability in a lot of contexts. It’s also why laws like the Americans with Disabilities Act often contain a piece that says that it’s not just disabled people, but people who are mistaken for disabled people, who are protected. What matters to make something ableism is not whether or not the person qualifies as “biologically inferior,” whatever that means – it’s how people are treated based on that purported inferiority.

Once you start to see the basic patterns involved in ableism, you can see why it’s behind core aspects of every other kind of oppression:  Every form of oppression uses ableist ideas, actions, and concepts to further some of its most fundamental goals.  You’re going to always have your oppressed group being ranked in a hierarchy based on ability and found wanting.  You’re going to always have your oppressed group face some degree of medicalization.  You’re going to always have your oppressed group treated in ways that disabled people are treated, and the same sorts of reasons used to justify such treatment.  And unless you address these things, you can’t address the way your oppression plays out.  They happen in areas too central to how the oppression works — you can’t pretend the ableism doesn’t exist and get rid of the whole oppression at the same time.  Your form of oppression would be unrecognizable without ableism as a core feature.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it. If all you can find is lists of “ableist words” with people telling you that stupid is a slur or something, you’re not usually going to find much depth there — whether or not you think stupid is a slur, that’s just not that fundamental to what ableism actually means. And frequently that sort of shallow take on things is what you’ll find if you just look up ableism. But if you look into the hard-core stuff within the zillion different branches of the disability rights movement, you’ll find a lot.

One of the best general introductions to modern disability-rights thinking about ableism in general, that I’ve found, is the book Pride Against Prejudice by Jenny Morris. There are tons of other entry points, that’s just one of the clearest, from my perspective.

You don’t have to agree with everything a disabled person says about ableism. Disabled people don’t all agree with each other.

Some disabled people seem to concentrate entirely on language and insist that it’s the most important thing because it changes people’s thoughts and changing people’s thoughts changes their actions and so forth. I think that’s a dangerous misconception, and I don’t honestly care so much what people think as much as how they treat me – if they think I’m inferior and treat me with respect anyway, then their thoughts are their business. I’d rather deal with someone who treats me with utter respect and calls me the worst ableist slurs I’ve ever encountered (IMHO, “retard” and “vegetable” and “empty shell” are all up there), than deal with someone who knows all the right words but treats me like shit. Other people have other ideas entirely about these things.

You get the idea: We don’t all agree . You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone. However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

And what specific situation you’re talking about will determine a lot about which disabled people you want to go to first. Want to deal with critiques of IQ testing? Go to people with intellectual and other developmental disabilities first. Don’t be fooled by stereotypes, we have a long-standing self-advocacy community who have been developing ideas about this stuff for decades.

And there are also always general ideas about disability that can be applied across the board, but in slightly different ways. The idea of accessibility was once focused entirely on wheelchair access. These days, there’s also a concept of cognitive access. Where interpreters in disability context used to concentrate entirely on translating between signed languages and spoken languages, there are now interpreters who assist people whose speech is hard to understand, and there are cognitive interpreters or English-to-English interpreters who interpret between the words and gestures of someone with a cognitive disability and the words and gestures of someone without a cognitive disability. The social model, like most aspects of mainstream disability theory, was once only for physically disabled people, and is now being applied to cognitively disabled people as well. Neurodiversity was once used in a context that was almost exclusively about autistic people, and now it’s about anyone with a neurocognitive disability.

Understand – I’m not endorsing any of these concepts. I hate some of these concepts. I think some of them are misguided or dangerous or simplistic or all kinds of other things. But I don’t want to decide that for you. I’m just giving you resources as a jumping-off point and you can make up your own mind. Hell, I’m not even that heavily into the idea of analyzing oppression in the way I’ve done in this post. I just think it’s important and useful for someone to be doing it somewhere so that people can see the underlying issue here – which is that you can’t address your own oppression adequately without addressing ableism, no matter what your oppression is, whether you’re also disabled or not.

So with all that in mind, I want to give you some keywords for common disability communities or disability-based ideas. Again, none of this is an endorsement of any of these communities or ideas or the views contained within them. They’re just places to start looking. I get frustrated when people say “Google things, it’s easy” and then won’t even tell you what to Google. Most people don’t even know enough about ableism to know that ableism is fundamentally about unequal treatment on the basis of real or purported biological and psychological characteristics. Most people who have heard of ableism have only heard of it in the contexts of word lists. There’s no way someone in that position is going to even know where to begin on Google, and it’s unfair to have that expectation of people. I’m perhaps more sensitive to that kind of thing specifically because of understanding cognitive ableism – and that’s precisely the sort of situation where an understanding of ableism can be useful throughout any oppressed group. I guarantee as you really learn what ableism is – really learn the depths of it – you will find concepts you can use in fighting your own oppression.

One more note about the keywords: All of these communities and ideologies and intellectual traditions, come from vastly different places. All of them accept some forms of ableism and reject others, that’s pretty much inevitable. Some of them are groups of people formed together mostly by life experiences, others are groups of people formed together mostly by shared diagnostic categories, others are a mixture of both. Some, like the concepts of developmental disabilities and psychiatric disabilities, are more accidents of history than categories that have an automatic, genuine meaning. Some, like psychiatric consumers versus psychiatric survivors, fall within the same broad category of people but differ based on how they interpret their own experiences, which aspects of the medical system they accept and which aspects they reject. But all of these are groups of people, and ideas formed by groups of people, who have formed significant ideas about the rights of disabled people within an ableist society. While the faction wars can be absolutely infuriating at times, the diversity among disabled people in terms of both life experiences and Ideas about those experiences, can be a great strength. You can find really important ideas within every single one of these groupings without ever having to believe everything they say wholesale.

So here’s a list of keywords you might find useful:

  • Disability rights, disability rights movement
  • Disability culture
  • Crip culture, crip, gimp
  • Self-advocacy, developmental disability self-advocacy, intellectual disability self-advocacy, learning disability self-advocacy, self-advocates, I/DD self-advocacy
  • Cognitive disability, physical disability, psychiatric disability, intellectual disability, developmental disability, sensory disability
  • Autistic self-advocacy, autistic liberation, autistic rights, autistic community, autistic culture
  • Deaf community, d/Deaf community, Deaf culture
  • Psychiatric survivors, psychiatric consumers, psychiatric ex-patients, consumer/survivor/ex-patient, c/s/x, mad pride
  • Neurodiversity, neurodiverse, neurodivergent
  • Patient advocacy, patient’s rights
  • Disability theory, disability studies, social model of disability, radical model of disability
  • Cross-disability
  • Disability access, accessibility, universal design, visitability
  • [Insert disability, disability-type, or disability-tool name here] access, [Insert disability, disability-type, or disability-tool name here] accessibility – for instance, wheelchair access, wheelchair accessibility, blind access, blind accessibility, screenreader access, screenreader accessibility, cognitive access, cognitive accessibility, etc.
  • Cognitive interpreting, English-to-English interpreting, sign language interpreting, [insert specific sign language here] interpreting, speech-to-speech relay
  • Ableism, disablism, ablism, disableism, disphobia, handicapism
  • Cognitive ableism, psychiatric ableism, physical ableism

I know I’ve left plenty of people out, and this is obviously centered on English-speaking cultures. But that’s more than enough to start with. If you’re looking for specific ideas tailored to specific experiences, then learn what these terms mean so that you can look up those experiences when you need to. Different movements, and different parts of the same movement, will give you very different ideas about the same problems, and that can be incredibly useful.

So I hope by now I’ve convinced you that not only is ableism about more than whether or not it’s a slur to say the word ‘stupid’, but it’s a vital part of understanding any other form of oppression you might face. I also hope I’ve given you enough places to start, that you can make a good start on finding any resources that might be useful to you in beginning to understand ableism and the experiences of disabled people in the world. And again, I guarantee that if you begin to truly understand what ableism is, you will find the concept useful in contexts you never dreamed of.

If you’ve made it this far, thank you for listening.  I really appreciate it.  Getting this idea out there means a whole lot to me, even the parts of it I’m not so sure I agree with.  It’s stuff that someone needed to say, so I said it.


(1) I’m putting what would normally be an introduction, down as a footnote, just so it won’t distract from anything in the actual post. The post is far more important than the introduction. So here’s what I was going to write as an introduction: 

 

This was an extremely difficult article for me to write. I understand the underlying idea easily enough. But to put it into words has taken me a long time, and a lot of effort. This is more abstract and intellectual than my posts tend to run.

But I felt like while a lot of disabled people alluded to this idea, nobody was expanding it enough for nondisabled people with no connection to the disability community to understand it. When I tried to tell people in short form, they assumed I was saying something totally different than what I was saying. So I developed these ideas until I could articulate them, and then over the past six months or so I have worked very hard at writing them down.

I still barely finished in time for Blogging Against Disablism Day, I wasn’t actually sure I could finish in time for Blogging Against Disablism Day. I’m still shocked that it’s happened at all. This was the original post I intended to write for BADD 2016, one that dealt with ableism as a whole rather than one particular disability experience. 

I’m very relieved to have finished It, not least because I am always pigeonholed as an autism blogger, I don’t see myself as an autism blogger, and it’s frustrating to sometimes only be able to write posts that reference autism a lot. Autism is not my only disability. It’s not my central disability – I don’t exactly view myself as having one of those. It’s just a word that psychiatry coined for a bunch of people, tat’s become useful enough that I’ve felt compelled to use it in certain circumstances. But I find that even in disability contexts, hell even in contexts with other autistic people, the idea of autism begins to overshadow your personhood in a way that few other disability labels match in my experience. Nobody considers me a ‘myasthenia gravis blogger’ and writes about my entire life and all of my ideas as if they can be encapsulated by the idea of myasthenia gravis, but that’s exactly what people do with autism. I can write about things that have nothing whatsoever to do with autism and still get most of my responses back about autism. It’s kind of ridiculous but nobody questions it, not even most autistic people.

So this year I really wanted my post to be about something that could not be tied back to autism like that. I mean I’m sure somebody somewhere will try, but there’s nothing about this post that is even remotely autism-specific, unlike my other two contributions this year. There are lots of other posts I wish I could have made this year, but I’m going to rest happy knowing that I made this one post, at least. 

And I hope that it can serve as a resource for people who are just beginning to learn about how ableism affects oppressed people who are not themselves disabled. Because it does, and it does so in specific, predictable ways that are pretty consistent across every form of oppression. And that’s important. And someone had to say all of this.

A lot of my posts in general seem to fall under the category of “I couldn’t find anyone saying the thing I wanted to find someone saying so I said it instead.” And this definitely falls into that category. There’s a lot of ideas contained within the post that I don’t even necessarily agree with, but that are necessary to the way the post is written. So this is very much not a personal post, and very much a post about a general idea that I think is important to communicate, even the parts of it that I don’t wholly agree with. What other people take out of it is their business, but I hope each person can find something useful there.

Advertisements

Almost Alike: A Medical Cautionary Tale

Standard
Blue medical bracelet with a medical symbol in white and the words "Adrenal Insufficency" on a metal plate.

Medical bracelet that says “Adrenal Insufficiency”.

I’ve been thinking about medical stuff a lot lately, so apologies if my posts tend towards the medical for a little while.  It’s what happens when you suddenly realize how lucky you are to be alive, and how close you came to death.  My father’s cancer has me thinking about life and death and medical care a lot, too.

In my dealings with doctors, I have found that they like the solutions to their problems to be neat and tidy.  In particular, they want there to be one diagnosis that explains all the symptoms they’re observing.  They want their patient to have that one diagnosis, and if their patient shows signs of more than one thing, it fouls up everything the doctor wants.

Case in point:  I had this neurologist at the headache clinic.  I told him that they strongly suspected my mother of having myasthenia gravis, or hereditary myasthenia.  Both are neuromuscular junction diseases that cause specific muscles to wear out quickly as you use them.  So for instance my eyes start out tracking the same object fairly well, but as time goes on, they drift outwards leaving me seeing double.  I had told my neurologist all about this, and about other muscular problems I’d been having.

I don’t remember why myasthenia came up, but I told him I was going to start on Mestinon, a medication that treats myasthenia.  His response was swift and a little annoyed:  “It’s not going to do anything.  I don’t think you have myasthenia.” 

“Why not?”

“Because people with myasthenia have trouble with specific muscle weakness. You have generalized weakness.  It’s not the same thing.”

He explained it as if I didn’t know this.  But he also explained it as if I hadn’t told him time and time again about the specific weakness, that was separate from the generalized weakness.  As if I hadn’t told him things were more complicated than he was expecting.

He offered to run an EMG but told me the results would be negative because “You just don’t have myasthenia gravis.”  I declined the testing.  I don’t like to be tested under circumstances where the doctor has already determined what the results are going to be.  Plus, I’d just been through an invasive procedure that left me in horrible pain for weeks, and I didn’t feel like being poked and prodded again.

But I did try the Mestinon, and it did make a difference.  It was subtle at first.  I could walk around my apartment without falling.  My eyes tracked things better, and for longer, before the double vision kicked in.  It was things like that.  The more Mestinon we added, the better those things got.  So it seemed my headache doctor was wrong, and there was something real about the effects of the Mestinon.

But in other areas, I was getting weaker.  In fact, as far as I could tell, I was dying.  I was hesitant to tell anyone this fact, because it felt like a fairly dramatic thing to announce.  But I’d known terminally ill people who had more energy than I had at times.  And I have instincts that tell me when something is going badly wrong.  Something was going badly wrong, and it went along with that more generalized muscle weakness.

I’ve already told the story of how I got diagnosed with severe secondary adrenal insufficiency.  And that’s what happened.  They found no measurable evidence of cortisol or ACTH in my blood.  When they flooded me with ACTH, I made cortisol, but not as much as expected.  Meaning my pituitary gland is not making enough ACTH to tell my adrenal glands to make cortisol.  And this was the reason for, among many, many other symptoms, my severe muscle weakness that affected my entire body.

I went into treatment for adrenal insufficiency and everything seemed to be looking up.  No longer bedridden.  No longer required to use a wheelchair for anything.  Not that I minded these things so much when they were happening, but it’s nice to be able to get up and walk up and down a flight of stairs when you want to.  It feels good to be able to exercise, after six years of bedrest.  Dexamethasone makes me feel alive again, instead of waiting for the next infection to kill me.   I feel strong, and sturdy, and robust, in a way I haven’t in years, and my friends sense the same thing about me.

The only problem?  Not everything went away.  I still had weakness in specific muscles.  I’d been referred to a new neurologist at the same time they were testing my cortisol.  This neurologist never pretended he had any answers.  He was simple and methodical in the way he worked.  He would come up with a list of every possibility, no matter how remote, and then he would run tests for every possibility.  This made me trust him in a way that I didn’t trust my migraine neurologist.  So I let him do any test he wanted to do.

Many of the tests, he came in and did them himself, which is unusual for a doctor.  Usually they delegate that stuff.  He did a regular EMG that turned up nothing, and I thought “See, my mother didn’t have an abnormal EMG either, so whatever we have isn’t going to show up on tests.”  Neither of us showed up as having the antibodies, either.  I began to think this was going to be one of those things that we never solved.

Then he called me in for something he called a single fiber EMG.  He was going to stick a wire into my forehead and measure something about the muscles.  I remember that on that day I had a lot of trouble even holding my head up on one side, and that I was seeing double.  He stuck the wires in, made me raise my eyebrows and move my eyes around.  There were a lot of electrical noises.

At the end of the test, he told me he wanted to see me as soon as possible because the result was abnormal.  The muscles were firing asynchronously. 

I didn’t know what that meant, but a week later I was in his office being told that I probably did have a neuromuscular junction disease after all.  Probably myasthenia gravis, possibly a much rarer hereditary form of myasthenia.

And to think that literally a couple weeks before I got the single-fiber EMG, my regular doctor and I had been discussing whether I really needed to be on Mestinon anymore.  We thought maybe my only real problem had been the adrenal insufficiency all along, and that my response to Mestinon might have been some kind of placebo effect (even though I don’t seem very prone to that effect even when I want to be).  Even I was starting to fall prey to that idea that a diagnosis is just one thing.

Right now, we don’t really know what exactly my diagnosis is.  We know for certain that I have secondary adrenal insufficiency.  And we are pretty certain that I have a neuromuscular junction disorder, and the most common one of those is myasthenia gravis.  (I’m just going to refer to it as myasthenia gravis for the rest of this.  Because it’s shorter than saying “the thing we think is myasthenia gravis maybe”.)

But the important thing — the thing a lot of doctors miss — is that there is not one diagnosis here.  There are at least two diagnoses, possibly more.  This is not the first time, and it won’t be the last time, that I’ve had doctors miss something fairly obvious because they thought that the simplest explanation is always a single diagnosis. 

I still remember back when I was dealing with three different diagnoses that affected movement in different ways:  Adrenal insufficiency, myasthenia gravis, and autistic catatonia.  And any time we’d try to bring up a symptom of one of them with a doctor, they’d bring up a “contradictory” symptom from a different one of them, and that would mean that… it couldn’t be myasthenia gravis, because sometimes I froze stiff instead of limp, because I also had autistic catatonia.   And it went on like that for years, where every condition I had was ‘contradicted’ by some other condition, so many of the doctors refused to see the complexity of the situation.

Sometimes that resulted in situations that were almost funny, but other times it could turn deadly.  There was a time I was hospitalized for aspiration pneumonia connected to gastroparesis, and my doctor refused to treat me for anything other than the pneumonia.  So I had collapsed in my bed after vomiting so much that all the muscles involved had gone limp and I was starting to have trouble breathing.  In retrospect we think it was the start of an adrenal or myasthenia crisis, and that I belonged in the ICU.  But at the time, the hospitalist simply refused to treat anything that wasn’t pneumonia.  So I had to lie there totally immobilized, delirious, and hallucinating, wondering whether I was going to survive, for days on end.  All because a doctor was only willing to think about one condition at a time.

Over the years, I’ve picked up an impressive collection of diagnoses.  Many of them are based on symptoms and my response to treatments.  But some of them are based on hard-core medical tests like high-resolution CT scans — things you can’t confuse for anything other than what they are.  I’m going to list the ones that  were diagnosed by those hard-core medical tests, and understand I’m listing them here for a reason:

  • Bronchiectasis (high-resolution CT scan)
  • Frequent bowel obstructions (x-ray)
  • Central sleep apnea (sleep study)
  • Obstructive sleep apnea (sleep study)
  • Early-onset gallbladder disease (ultrasound)
  • Exotropia (eye exam)
  • Gastroparesis (gastric emptying scan)
  • GERD – reflux (barium swallow)
  • Esophageal motility problems (barium swallow)
  • Dysphagia (barium swallow)
  • High cholesterol (blood test)
  • Hypermobility syndrome (Brighton criteria)
  • Myasthenia gravis or related condition (single fiber EMG)
  • Secondary adrenal insufficiency (cortisol test, ACTH test, ACTH stimulation test)
  • Urinary retention with spastic urethra (urodynamic testing)

So this is fifteen different conditions right here, that there is no possible way that I don’t have them.  They’ve been tested for, the tests are valid, there’s nothing unusual about the tests I was given, they exist.  I’m diagnosed with a lot of other conditions, but even if we pretended that those conditions turned out to be misdiagnosed because some of the diagnosis was subjective… I’m still left with fifteen conditions here that are very much real.  Some of them are more serious than others.  But many of them are difficult and complex both on their own and in combination with each other.  (Also, many of them went years misdiagnosed because doctors refused to even test me for them, believing that a person with a developmental disability or a psych history couldn’t possibly be telling the truth about their own symptoms.)

Now imagine you’re a doctor, and I’ve walked in your door, off the street, with no medical history.  And I’ve got the symptoms of all of these fifteen conditions.  Some of the symptoms are severe enough to be life-threatening.  And your very first instinct is to try to find one condition that accounts for all of these symptoms.  You’re going to be looking for a very long time, and you’re going to be lucky if I don’t die before you figure it out.

Of course, it’s still possible that there really is one condition that explains all this.  Or at least, a small handful of conditions.  There are many genetic conditions that can cause problems all over your body, and they can be notoriously difficult to pin down.  But for the moment, we’ve had to diagnose all of these things separately in order to get a handle on how to treat them. 

It may be there’s some genetic condition that causes neuropathy (my mother and I both have symptoms of autonomic and sensory neuropathy), which could in turn cause the gastroparesis and esophageal motility problems (and dysphagia, and other things that aren’t listed above), just as one example.  But right now we don’t have that information.  Right now we just know I have gastroparesis, and that it doesn’t play well with reflux and bronchiectasis, and that if I hadn’t gotten a feeding tube in time it probably would’ve killed me.  There could also be something behind the adrenal insufficiency, but that damn near did kill me a number of times before we even knew enough about it to put me on dexamethasone. 

And that’s why it’s important that medical professionals not restrict themselves to a single diagnosis when they’re looking at what’s going wrong with someone.  If you see symptoms that look contradictory, then you ought to be wondering if you’re looking at more than one condition at once.

If there’s one thing I have noticed, having been in and out of hospitals for a long, long time… it’s that my roommates are usually people like me.  They’re people with multiple medical conditions all at once.  They’re not textbook illustrations of a single condition in all its pristine glory.  They’re a mess, just like me.  Like my roommate who had both Lesch-Nyhan and myasthenia gravis (and was a woman, which is rare for someone with Lesch-Nyhan in the first place).  They really treated her like crap, too — they wouldn’t believe a word she said about herself, unless they could verify it from some outside source, which they always did, but still never trusted her.  Sometimes I heard her crying after they left.  At any rate, I can’t remember a single hospital roommate who had only one condition, unless they were in there for a routine surgery.

Which tells me that those of us who end up in hospitals on a regular basis, at least, are people with complicated medical histories.  Not people who just have one simple thing that can be figured out.  Which means that no hospitalist should ever do what one of mine did and say “I’m only treating the pneumonia, nothing else matters, no matter how bad things get.”  I’m really passionate about this issue because I’ve seen how close to death I’ve come, how many times, just because everyone wanted my body to be simpler than it was.

Maybe the problem is that we train doctors too much on textbooks, and on the people who most resemble textbooks.  We don’t want to confuse them with too much, all at once.  So they grow to look for the one explanation that will explain it all, instead of the fifteen or more explanations that will explain it all.  And in the meantime, their patient could die while they’re waiting to get properly diagnosed.

And that’s the part that worries me.  I’m very lucky to be alive.  My doctors know I’m very lucky to be alive.  And I have a pretty amazing team of doctors.  I have a great GP, a great pulmonologist, a great neurologist, and a great endocrinologist.  These are doctors who are willing to listen to me when I know more than they do, but also willing to argue with me when they know more than I do, it’s the perfect combination. 

My GP has been here since I moved to Vermont, and he is known in the area as one of the best doctors around.  We have our disagreements, but he always explains his decisions to me, and I always explain my decisions to him.  We respect each other and that makes everything work.  He has done his best to stand up for me in situations where my social skills have caused problems with other doctors.

My pulmonologist is amazing.  She always anticipates situations where I’m going to face discrimination, and she’s always ready.  When she knew I was heading for a really bad pneumonia, she had my lungs CAT scanned to prove the pneumonia was there, because she knew nothing less than that would get me admitted to the hospital.  And even then it took all she and my GP could do to get me into the hospital and keep me there long enough to get me a feeding tube.

I’m new to my endocrinologist, but he’s clearly really good too.  He’s been helping me through the first stages of being diagnosed with adrenal insufficiency, including things as difficult as when to stress-dose and how much.  He’s given me the confidence to figure out on my own the amount of steroids I need to give myself in physically or emotionally stressful situations.  That’s a key skill you have to have to avoid adrenal crisis, and I think I’ve finally got the hang of it.

My neurologist is also new, but he’s clearly highly competent.  There’s nothing flashy about him or anything.  It’s not like he has some kind of flashy swagger like you see on TV shows.  He’s very quiet.  What he has is the ability to be mind-bogglingly thorough.  He listens to everything you have to say, he asks very careful questions, and he takes very careful notes.  Then he thinks up every possible condition that could result in the symptoms you have, no matter how rare or improbable it seems.  Then he figures out which ones are the most important to test for first.  And then he pretty much tests you for everything.  If there were two words for him, it would be methodical and thorough.  And it’s paid off — we now know I have something similar to myasthenia gravis, even though all the signs were pointing away from it for awhile.  Like my GP, he’s one of those doctors that other doctors hold in very high regard.  I can tell by the way they talk about him.

I wanted to make a point of talking about these doctors, because the point of this post is not to bash the medical profession.  These are people who have saved my life.  These are people I have built a relationship with over the years, or am in the course of building a relationship with now.  I’ve had plenty of truly awful doctors, but I’ve had a surprising number of truly great ones as well.  Most are somewhere in the middle.  But the great ones are the ones I owe my life to, many times over.  They have done things for me that, I am sure, they have never even told me about, and probably never will.

But all doctors, no matter how great, need a reminder that medical conditions don’t come in neat, orderly packages the way the textbooks make them sound.  Most disabled people and people with chronic illnesses have multiple conditions, not just one.  Often, these conditions have symptoms that can seem to contradict each other.  And even when there’s one overarching condition that causes all of them, there’s a good chance you’re going to need to find all the smaller conditions before you can put the puzzle together.  Many times, finding all the smaller conditions is a matter of life and death.  People simply can’t wait around to find the perfect most elegant answer when we’re going into adrenal crisis or myasthenia crisis on a regular basis.  Maybe there’s a reason I have adrenal insufficiency, and maybe one day they’ll find it, but for now I need to be on dexamethasone so I don’t die in the meantime.

Tube Love

Standard
Drawing of a GJ feeding tube.

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

This is how I feel when I read a lot of posts about the Judge Rotenberg Center.

Standard

Close the Judge Rotenberg Center.  For the love of everything holy, close the Judge Rotenberg Center.  Stomp it into the ground and dance on its fucking ashes.

But.

You won’t be done.

You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.

Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.

But people can be hurt just as bad or worse without it.

People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.

People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.

You can’t understand, maybe, why this is true.

You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.

It can’t.

You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.

It isn’t.

It’s so much more complicated.

I have a friend who gets really upset every time some over-the-top institutional horror story makes the news.  So do I, for that matter.

One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things.  She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes).  I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.

I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system.  I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR.  Staying free takes up more of my energy than I’d like.

I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.

At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center.  I am not somehow different from people who go there.  You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.

(That’s true of all institutions.  The people who live inside them, and outside of them, are identical in every way.  The only difference is how the support takes place.  When it’s support at all and not just hell on earth.)

Anyway.

What I want to say is.

One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.

Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.

We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.

The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places — sometimes above-board, sometimes secretly.   Often it’s things you can’t even name.  Those things are happening in the JRC too.  Those things hurt people there as much as the torture does.  Nobody is doing a huge campaign to shut down those things.

Many people, if the JRC is closed, will simply be sent to other institutions.

They will then be told that they are lucky and that those other institutions are better.

They may come to believe those other institutions are better.

Those other institutions may actually be better.  But they may not be.  It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.

And they will continue to get hurt by that.  They may not realize they’re getting hurt by that.  They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.

And that hurt may be harder to recover from than the JRC.

How do I know this?  Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a ‘better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how ‘better’ they were while living how worse they were deep down.  I still live with how worse they were.

And I know many other people who have the same story to tell.

And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was able to.  My situation was unique to me.  I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances.  The difference between people on the inside and people on the outside is not their disability.

But once you’re in a long-term institution, it’s harder to get out.  I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”.  Which was still a hellish environment, mind you, but more chance of freedom, there, too.  And I had people around me savvy enough to advise me how to take the chances I had.

And most of the people in the JRC won’t be leaving to freedom, if it gets closed.  They’ll go to other institutions.  And however grateful they are to be out of the JRC, they will get hurt in those new places.  Because that’s what institutions do.  Invariably.  You don’t have to know you’re hurt to get hurt there.  You don’t have to understand how deep the hurt goes, to get hurt there.  You just have to be there.  And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you.  You can get turned inside out without anyone laying a finger on you.

Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon.  And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions.  Anonymous will never catch on and take part.  The world will not be outraged by the damage inflicted, no matter how devastating.

And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions.  They’ll connect it to the nebulous concept of ‘mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it.  Nobody will notice that the ‘increased mental illness’ is correlated with the institutions themselves.  Nobody ever does notice.

Nobody catalogues this kind of damage.  Few people study it.  Few people understand it.  Few people can see when and where it is happening.  Few people can understand the damage in the first place.  Most people who describe the damage won’t be believed.

Worse than merely not being believed:

When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible.  Because some of the worst damage is inflicted on us in places that other people see as wonderful.

They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions.  There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates.  There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse.  There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse.  There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse.  There are people who have been moved from ‘bad’ institutions everyone loves to hate, to wonderful paradise-like ‘intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.

People ignore this.

People ignore this completely.

No, worse.

People ignore this and they utterly disparage any current or former inmate who says these things.  They say we don’t understand what we’re talking about.  They say we have no vision.  They say we have no comprehension. They say we don’t understand how good we have it.

And it’s even worse for people who have only been to the ‘better’ (in the eyes of the public) institutions, and complain about how awful they are.  They’re told that they don’t understand how good they have it, only much worse.  And they are told they should be grateful for what they had, that they wouldn’t last a day in a ‘real institution’.

Hell, I’ve been told I haven’t been in a ‘real institution’ just because I was in locked, private, short-stay institutions a lot of the time.  (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.)  Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.

So people who’ve only been in much fancier, much ‘better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences.  Especially if they’ve been in the pseudo-utopian farm communities, or the ‘intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are.  You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.

Anyway.

People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way.  People outside of institutions want the blood and gore and skin shocks to prove a place is horrible.  They don’t want to understand that there are things more horrible than any of that.  They don’t want to understand.  They just don’t want to understand.

And people in institutions often don’t want to understand either.  I didn’t want to understand what was happening to me.  I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free.  I wanted to believe that really badly.  You have a vested interest in believing you’re someplace better now, that things will get better.  Sometimes believing things are better is your only defense against how awful things are.

But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me.  It’s easier to heal from physical wounds than it is from psychological and emotional wounds.  It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time.  You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me.  I mean, it does, to some degree.  Things like that always do.  But there are things that have damaged me deeper, in ways I can’t even articulate.

And my friends and I, when we see coverage like this, we’re so afraid.

We’re afraid of the ‘better’ institutions.

We’re afraid of the public’s idea of what a ‘really bad institution’ is.

We’re afraid of some of the disability community’s idea of what a ‘really bad institution’ is.

The JRC is a really bad institution.  It’s doing that horrible kind of damage at the same time that it’s doing the physical damage.  I can see that.  Because it’s got enough funding, it can really fuck with people’s heads.

But you could force the JRC to remove every piece of physical punishment it owns, even restraints.  And it would still be horrible.  It could even become worse.  Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind.  And hurting your mind does the most lasting damage there is.

The JRC needs to be shut down, period.

But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.

And there are places even worse that will never be shut down either.

And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.

There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.

There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.

Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense.  I’m talking about, the worst in terms of the overall amount and kinds of damage done.

I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities.  I’m not trying to negate any one person’s personal experience.  I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.

But I’ve seen disabled people who compete with each other about things like this.  They say that they, unlike so-and-so, had experience with real institutions.  Or they, unlike so-and-so, had real bad experiences.  Or they, unlike so-and-so, were really traumatized by what happened to them.  That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition.

And there’s… absolutely nothing productive that happens there.  That’s ego-driven bullshit.  It’s not activism, it’s not helping anyone at all.  It’s a competition in self-pity.

So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life.  I’m doing so with the aim of showing people things they don’t want to see.  I’m saying that what most people say is best, in terms of institutions, is often the worst of all.  That often, the most damage is done where it can be seen the least.  People have to understand this if they’re going to have any hope of actually reducing damage.

So close the JRC, close it over and over and over again until it’s really damn closed.

But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.

Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised.  It’s a pretty diabolical physical punishment.  But sometimes — no, more like often or usually — people are damaged worse by things that don’t touch them physically at all.

Your instincts here are not necessarily a good guide to what is truly awful.

And I worry so so much about what will happen to people after it closes.

And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.

(Trust me, behind just about every utopian institution lies a dystopia beyond imagining.  And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)

My worst nightmare.  And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had.  They vary in content, but they go something like this:

I’m living in a place with lots of other people with disabilities.  There are staff there.  The staff try to give us every freedom they possibly can, at least as visible from the outside.  In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so.  But there is someone following along behind me to make sure I don’t get hurt.  I feel like a child.

I feel like I’m suffocating.  I feel like I’m suffocating in cotton candy.  But I can’t point to anything particular that’s wrong.  There’s this fog that lurks over the entire place.  It’s white, maybe slightly yellow or pinkish white, but mostly white.  And it obscures the ability to see anything.  And it smells like sweetness.  And it feels like death, in the worst possible sense.   But you can’t tell where it’s coming from.  It’s everywhere and nowhere at once.  You can’t see it except in your head, and only out of the corner of your mind’s eye.

Staff are nice to us, in the same way that people are nice to young children.  They giggle at us as if we’re cute.  They hug us a lot.

They also make us do what they want us to do.  It’s not possible to know how they do it.  They don’t use physical torture or restraints.  They don’t even always use drugging or anything like that.  We just… somehow always end up moving in the direction that they want us to move in, so to speak.

When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two.  And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.

This isn’t the best description, because the problems of these places can’t be described.  I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.

Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC.  Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that.  And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.

I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.

I can’t.

But it is.

Please trust me on that.

Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it.  (And no, it’s not “don’t close the JRC” or “the JRC is good”.  Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)

I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.

Now I’m going to try to get some sleep again.  I hope I don’t have nightmares.

ETA:  Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything.  (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you.  She got fired for trying to stop them from killing her.  So she survived Willowbrook only to get killed by staff in a ‘supported apartment’ group home setting.  So… that’s a very specific example for a very specific reason.)  The public doesn’t want to close all institutions when they hear of things like this.  They want to make good institutions and then forget about the matter.  And the good institutions can be worse than the old ones in many ways.

[This post was originally written on December 21, 2013.  I completely forgot I wrote it, but it is always a good time to resurrect a post of this sort.  Because people always need a reminder of certain realities about  institutions.  They’re all too happy to forget, that much never changes.]

Your politics have a problem when they contradict the real-life experiences of the people they’re supposed to be about.

Standard

Your politics have an even bigger problem when the people they’re supposed to be about, become afraid to describe our real-life experiences, for fear of angering the echo chamber.  And when we become afraid to describe our real-life experiences, that reinforces your idea that or real-life experiences don’t actually exist.  Which reinforces the idea that you’re right.  Which makes you feel even more justified in attacking anyone who happens to contradict you for any reason at all.

I hate this.

I hate it because I am afraid to say certain things about my life.

Because I don’t know if I have the strength to handle the consequences if I do.

Because I understand, I more than understand, why the echo chambers believe as they believe.  I understand what’s at stake.  I understand why it’s so easy to believe that contradiction is a threat to your life, because in some areas, it almost, sort of, can be.

And yet I also understand what’s at stake when all of us little people on the ground aren’t allowed to talk about our lives.

And there’s more at stake there than you think.

When we can’t have a conversation.

When we can’t bring our little packages of our truth from our lives to the table, and unwrap them together, and look at them, and learn from each other, without judgement.

Then something is dying, and something has died, and something is dead.  And your entire echo chamber smells of rotting flesh.

But we are still alive.

And we still pass around our little packages to each other.

But instead of doing it in the full light of day, where everyone can see and benefit from it.

We do it furtively, at night.  We look around, make sure nobody is looking, tiptoe to the neighbor’s house, sneak in through the back door so nobody sees us coming.

We send each other packages in the mail with no return address.

We write our stories in invisible ink.  We write them in code.

You should know all about this.  This is what it was like for all marginalized people, before your movements got started.

But now, instead of just hiding from the oppressors, we are hiding from your movements.

You might want to take a really good, long look at why that is.

I once took part in a disability studies group we called Disability Studies Prometheus.  Because we were people traditionally left out of disability studies.  We were cognitively disabled, or too sick to make it to class, or other things.  We called ourselves Prometheus because he stole fire from the gods for the benefit of humanity.  We were stealing the fire of knowledge from the mainstream disability studies programs that wouldn’t let us in — our IQs too low, our behavior too wild, our bodies too unreliable for the university setting.  So we stole what we could from them, and we made the fire our own.

Don’t for a moment believe that this isn’t happening everywhere.

There are disabled people stealing fire from the mainstream disability communities.  Trans and genderless people stealing fire from the mainstream trans communities.  People of color stealing fire from the mainstream PoC communities.  Poor and working-class people stealing fire from Marxist and other anti-classism echo chambers.  LGB people stealing fire from the ivory towers that theorize about queerness all day.  Women stealing fire from mainstream feminism in all its incarnations.

More than that, there are marginalized people stealing fire from the marginalized people who have gained power.  And the ones stealing the fire don’t always stick to the communities we’ve been taught to stick to.  So you have nondisabled trans women of color stealing fire and bringing it back to cis men with profound multiple developmental disabilities, and both of them learning to tell their stories together.  And you have elderly gay white rich healthy men stealing fire and bringing it back to children of color living on cancer wards.

All around you, in the night, where you can’t see us.

We are all around you.  We are carrying little packages around.  Packages wrapped in plain, nondescript, brown paper.

Those little parcels will overturn the world.  They will overturn everything you’ve ever worked for.  And they will make it better.

Because each little package contains the story of one of us.  And it is a story untainted by ideology.  It is a story untainted by who you say we should be.  It is a story that says who we are.

And our stories.  Our stories as ourselves.  Our stories without someone to look over our shoulder and tell us that it can’t be the way it actually was.  That the way it actually was, will automatically hurt someone else.

And we put our stories together.  Even if we have to do it in the dead of night.  Even if we have to do it in code, whether low-tech ciphers or high-tech encryption.  Even if we have to send it to each other anonymously, one by one.

We are cautiously, furtively, forming real communities.  Communities that are about helping each other, not about tearing each other apart, or about finding new people to tear apart.

You can even join us… if you learn to resist your impulse to jump down people’s throats the moment we don’t comply with expectations.

But the bottom line is: We are out here.  Nothing you can say or do will stop us from carrying around our little packages, handing them out to each other, reading them, discussing them.  We are being.  We are being joyously and cautiously, furtively and with abandon, but we are being.  We are handing out manuscripts and poems, index cards with recipes on them.  We hide them, we bury them, we slip them into our bras, into the back pockets of our briefcases and false drawers in our luggage.

And then we pull them out.  And we show them to each other.  And we read them.  We read them understanding each person as an individual, without judgement except where absolutely necessary.  And we find ways of making connections.  We find ways of making communities.  Not based on shared individual traits, so much as on a shared desire to understand and protect one another.  Shared understanding, based on learning about each other.  Even the parts of each other that would seem inconvenient at first glance.  Even the parts of each other, perhaps especially those parts, where our stories seem to contradict.   Because it’s those parts that show us where we most need to grow, and understand, and learn to see each other in new ways.

But we form communities because that is what people do, when we begin to understand each other in depth.  To understand each other enough to care what happens to each other.  And when we form those communities, we do so because we’ve learned so much about each other, on a deep enough level, that we can’t avoid caring about each other.

The most important part about communities formed in this way?  They’re not about ideas.  They’re about people.  Every single community member counts, and every single community member is the reason that we have come together in the first place.  Those packages we have exchanged are our stories as people, our experiences in the world, our lives.  And everything that happens in these communities are based around that.  Not around ideologies, not around constructing the perfect set of ideas.  Not around making sure that everyone’s thoughts are pure and free from dissent.  But around making sure that each human being is valued to the fullest extent possible.  Even if our stories seem to contradict each other.  Even if our stories seem to contradict the ideologies we remember from before.

This is another way to do things.  This is already happening, right in front of you.  I am doing this.  My friends are doing this.  We are doing these things because we are being harmed so much by ideologies, that there has to be another way, there has to be a way that we can change the world and survive doing it without selling our souls.  So if this seems like a far-off utopian dream, know that it is happening all around you.  It’s happening offline, it’s happening online, it’s happening right under your feet.  I’m doing it right here, right now.

Feeding tubes and weird ideas

Standard

My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.