#cognitive ableism

...is that they’ll have an image of a brain, and it will be rainbow, or have a Fibonacci spiral on it or whatever, and I guess this is supposed to symbolize the beauty of diversity. But the thing is, all of these images (at least the ones I’ve seen) only feature “normal”-looking brains. Even when the image features multiple brains, they’re all identical looking. 

No microcephalic brains. No brains without a corpus callosum. No brains where the entire thing is compressed into one side of the skull because it used to share that skull with a grapefruit-sized tumor. (That last kind is the kind of brain my mom has.) I’ve never seen a neurodiversity symbol featuring brains that look like that, and I feel like that ties into a bigger problem in the neurodiversity movement. 

A challenge to disability professionals and disabled presenters at conferences and panels: Please find a way to respond to the routine contempt that presenters with disabilities are treated with.

I’ve gone to a fair number of disability-related conferences in the past few years. At nearly every conference, I saw an audience laugh at a presenter/panelist with a developmental disability. This happened particularly often to presenters with intellectual disabilities, but I also saw it happen to autistic presenters and presenters with speech disabilities. 

This isn’t a matter of random jerk encounters; it’s a major cultural problem. Even disability professionals who pride themselves on inclusivity and respect tend to behave this way.

This isn’t nice laughter. It’s not a response to something funny. It’s a response to presenters talking about what they’re proud of, what they’re good at, or talking about wanting control over their own lives. People also laugh similarly when parents and siblings talking about their disabled relative wanting autonomy or objecting to being treated like a little child. This happens all the time, and it needs to stop.

If you’re moderating a panel and the audience laughs at a panelist, here’s one method for shutting this down:

Be proactive about taking the panelist seriously:

Don’t look at the audience while they’re laughing, and *especially* don’t laugh or smile yourself.

Wait for the audience to stop laughing.

Pause briefly before going on. This will make the laughter feel awkward.

Ask the panelist a question that makes it clear that you respect what they’re saying.

You can explicitly ask “Did you mean that seriously?”

You can also be a bit less direct, and say something like “That sounds important. Can you say more?”

You can also ask a follow-up question about the specific thing they were saying. 

I think that we all need to be proactive about changing this culture. (Including disabled presenters who get laughed at; we need to insist on being taken seriously. More on that in another post).

That anon question I got, got me thinking.

I get that kind of response a lot.  From people who are sure they’re right about crazy people being violent and dangerous in a way sane people aren’t.  Sometimes they outright tell me that I’ve seen the same things they have, but that I refuse to acknowledge it for “political” reasons.

It’s not like that at all.

I look at crazy people and I see people who vary as much as sane people.

People have asked me -- incredulously -- “Have you ever known anyone with dementia?”

Because I didn’t think tricking people with dementia into believing they were leaving a place and escaping, while the entire place they “leave” to is utterly fake, is the wonderful humane thing everyone else seems to see it as.

Especially after an experience with delirium -- which can produce similar disorientation to dementia -- in which I developed the delusion that I never left the hospital, that I was the one patient who never left the hospital, that my memories of home were a hallucination or a trick, and that they had set up an entire fake town and kept alive one friend of mine so that I would believe I was leaving and staying with a friend when really I’d spend the rest of my life in a hospital in what seemed like the future because I’d been there so long I didn’t realize what year it was and how everything had changed.  Luckily the delirium began to subside before I was rushed back to the hospital or I’d

And like -- experiencing that, even as a delusion, was enough to convince me it’s completely horrible to trick people that way, especially if they have any trouble at all understanding reality.

But that’s not actually my main point.

Like.

I believe that institutions suck because I know disabled people and because I have been in and seen the inside of way too many institutions.  This includes crazy people, but also all kinds of disabled people.  (I fall or have at one time fallen into most of the major disability categories -- cognitive, physical, psychiatric, developmental, emotional, chronic illness, congenital, acquired, progressive, stable, cyclical, etc.  I know people from all the categories, whether I belong to them or not.)

I believe what I believe about people with dementia because I know people with dementia.

But when I look at people with dementia I don’t see whatever the fuck everyone else seems to be seeing.

I see people.  Not people missing some vital component of being human beings.   Just human beings.

And this isn’t something I force to happen because of my ideas about the world.  I get my ideas about the world from observing the world.  I just observe different things.

I see someone who is seen as unable to answer questions, when what it looks like to me is she processes and responds to information very slowly, and nobody wants to wait around, or even thinks of waiting around.  When she answers at all, the conversation has moved so far on that nobody notices she’s not speaking nonsense, she’s just responding much slower than them.

And the more I see people with dementia, stroke, autism, intellectual disability, etc., who are automatically written off, the more I just see people, who are always taking in and responding to their environment, just not always in the usual ways.

And so many other people, even other people with some of these labels, see the same people as unpersons or only partial persons.  And I know this is how many people see me unless I prove I’m a person, which I can’t always do.

I swear people look at us and see images in their head rather than people.

I see people.

This is an area where I have a strong conviction that what I see is accurate.  It seems to be backed up by the perceptions of some other people - just not most people.

And this doesn’t mean I’m "better than” anyone or silencing my real perception in favor of wha tI want to see. This is really what I see.

And that’s the main thing I want to say:  People tell me to look at certain people so I look at certain people (including myself, often) and see things they don’t and don’t see things they do.

[She didn’t write it. (But if it’s clear she did the deed…) She wrote it, but she shouldn’t have. (It’s political, sexual, masculine, feminist.) She wrote it, but look what she wrote about. (The bedroom, the kitchen,her family. Other women!) She wrote it, but she wrote only one of it. (“Jane Eyre. Poor dear, that’s all she ever …”) She wrote it, but she isn’t really an artist, and it isn’t really art. (It’s a thriller, a romance, a children’s book. It’s sci fi!) She wrote it, but she had help. (Robert Browning, Branwell Brontë. Her own “masculine side.”) She wrote it, but she’s an anomaly. (Woolf. With Leonard’s help…) She wrote it BUT…]

From the cover of How to Suppress Women’s Writing by Joanna Russ.  I have never read this book, because every time I’ve tried, it’s proven to be one of those books that confounds my ability to comprehend the written word (there are a lot of those).  But the instant I saw the cover, I bought the book, and I think I still have a copy.  And the cover itself is worth it.  I make no claims for whether the insides are any good or not.

Anyway -- slightly tweaked, you can apply these ideas easily to ableist ways of dismissing disabled people’s writing, especially those of us whose disabilities are said to make writing impossible (cognitive disabilities especially, like autism and intellectual disability, also some psychiatric disabilities), or insight into our own existence impossible (same groups of people usually).  Here’s a blog post I made ages ago on the topic of disabled people’s writing and this book cover. And that doesn’t even cover the half of it.

And I’m sure I’ve seen these things attributed to many other marginalized groups as well.  There just seem to be standard ways of dismissing what we have to say and how we’ve managed to say it and whether we’re capable of understanding it.  

I also strongly suspect this is one of the areas I’ve talked about, where nondisabled marginalized people face ableist assumptions and ableist power plays even when they’re not, themselves, disabled.  Ableism is the only form of oppression I’ve found that is at work deep within the heart of every other form of oppression.  Because all oppression depends at least partly on ableist assumptions about whichever group is being oppressed.  (This isn’t to say ableism is worse than other oppressions, just that it’s the only oppression I’ve found that universally seems to exist within other forms of oppression. Others come close, but not quite as close.  This doesn’t make it better or worse, it just is what it is.  

If that last paragraph is confusing to you, you might want to read my post: There is ableism somewhere at the heart of your oppression, no matter what your oppression might be.  That was the first and only time I was able to really lay out what I mean when I say those things, and also what I don’t mean.  It was difficult enough to write (from a technical standpoint, given my cognitive limitations) that there are things I was not able to adequately cover, but I still think I did pretty well.

What nobody expects to happen, probably not even the writers of this book.

TL;DR at bottom, bolded, like usual when I can manage such summaries.

[Image shows a cognitively & developmentally disabled person, who has not always fulfilled Peter Singer’s criteria for personhood in a human being and still doesn’t consistently fulfill them (and even when they do fulfill them, others doubt it half the time), poring through a copy of Cognitive Disability and its Challenges to Moral Philosophy, edited by Eva Feder Kittay and Licia Carlson.]

Contributors to this book include:

Jeffrey P. Brosco 

James C. Harris

Martha Nussbaum (1)

Michael Bérubé

Cynthia A. Stark

Sophia Isako Wong

Jonathan Wolff

Hilde Lindemann

Bruce Jennings

Daniel Wikler

David Shoemaker

James Lindemann Nelson

Leslie P. Francis

Anita Silvers

Ian Hacking

Victoria McGeer

Anna Stubblefield

Licia Carlson

Peter Singer (2)

Jeff McMahan

Agnieszka Jaworska

Eva Feder Kittay

All contributors are academics in fields related to philosophy, law, or ethics.  Some of them have additional connections to this topic that make it more personal for them, sometimes profoundly so:  

Eva Feder Kittay has a daughter with intellectual disabilities. 

Michael Bérubé has a son with Down syndrome. 

Anna Stubblefield fell in love with a man with severe cerebral palsy.  She believed the relationship to be mutual and the sex they had was consensual.  The courts disagreed and sentenced her to prison time for felony sexual assault.  The controversy had to do with whether the man’s facilitated communication was valid or inadvertently being cued by his facilitators.  Whatever the truth was, the situation was heart-rending for every single person involved.

Anita Silvers has a severe physical disability.

Licia Carlson may have a connection to disabled people, but explicitly prefers not to disclose it either way because she finds the implications of such questions disturbing.

That’s just what I know and could find out quickly through their bios or through previous knowledge of their work.  I find it disturbing that no people with cognitive disability were represented in this book, at least not in a way you can find out quickly through the bios and the like.  And I only found one person where it was obvious they had any disability at all, and that was polio, not a cognitive disability.  

While I’m not one of those people who thinks that the only possible proper discussions of a certain set of people involve only those sorts of people talking about themselves?  I do get concerned when I see a group of people discussed and nobody from that group is present for the discussion.  (Except, apparently, as photographs on the cover.)  Especially when the discussion sometimes includes such topics as whether such people should be considered to have legal personhood or whether some humans should be accorded less personhood than some animals, entirely on the basis of cognitive disability, and similarly alarming topics.

Lest anyone suggest that there simply are no cognitively disabled people qualified to have such a discussion (and someone always does suggest this), totally untrue.  I know people with multiple university degrees and cognitive disabilities.  I know people with multiple university degrees and intellectual disabilities. Some of them even have degrees in fields relevant to this discussion, such as philosophy, bioethics, ethics, and disability studies.  I know, and know of, people who have written entire books on similar topics, who have cognitive, developmental, or intellectual disabilities.  And all of these groups of people I’m talking about, include both people who continue to test as having low IQ scores and every other trait currently used to mark out people with intellectual disabilities, as well as people who were given extremely low IQ scores until they found an alternate means of communication (and no, not all of them use any form of assisted typing, controversial or not).  So none of that would be any reason to leave the people with the most to gain and lose from the conclusions people come up with, out of these discussions.

Besides that, even if university degrees and all that crap were normally considered necessary to take part in such conversations?  If the very qualities that make you the sort of person under discussion in these conversations, simultaneously make it harder for such people to fulfill the standard requirements for participation in discussions like this?  (And it does.  It is much harder for most people with cognitive disabilities to succeed in academia for reasons that range from cognitive inaccessibility to obvious bigotry to the level of abstraction required to take part in ordinary academic discussions.  Although there are some cognitive disabilities that for some people, make it easier, and that’s less often talked about.)  

Then find some other way to get our voices heard.  Because our voices are vital to these discussions.  Everyone who either has a cognitive, developmental, or intellectual disability (three separate but somewhat overlapping categories covered by this book), or who can be readily mistaken for someone with any of these disability types, or who once had one of these disability types and now does not anymore (happens more often than you’d imagine -- for instance I have spent larger chunks of my life than anyone around me knew, outside of some definitions of personhood put forth by one of the authors in this volume) deserves the right to take a central role in discussions about our personhood and the ethical, legal, and social fallout of the decisions being made in these discussions.  And if it’s hard for us to understand, make it easier for us to understand.  You can’t fully make something like this cognitively accessible to every possible cognitively disabled person, but some of us can understand some of these things some of the time, and that’s enough to ensure that some of us can participate.

I hope that my reading uncovers the fact that I’m wrong.  I hope that I find someone in this volume who has a cognitive disability, a developmental disability with cognitive components, an intellectual disability, or a disability that causes them to be easily mistaken for any of these categories at crucial points in their lives.  But from what i’ve read so far, I think there’s barely any direct disability representation here and that’s all physically disabled people.  Person.  Because actually I’ve only tracked down one so far.

I’ve been labeled with more than one developmental disability throughout my lifetime, and retain an autism label.  I have cognitive disabilities both related and unrelated to developmental disabilities. I’ve been mistaken, in medical settings with potentially life and death consequences, for having ”the cognitive functioning of an infant” -- this sort of thing is an ongoing issue for me.  These decisions affect my life directly.  Nobody expects a person who at some points in their life -- and not just in infancy or other times before memory exists for most people -- has met several of the criteria Peter Singer uses to distinguish persons from nonpersons, to at any other time be able to pick up this book and read it.  But the truth is there are many, many people -- way more than you’d ever imagine -- capable of doing just that.

I don’t deny that it’s a struggle.  As a depressingly stereotypical (3) hyperlexic, my reading comprehension still isn’t the greatest at the best of times.  It takes me a long time to absorb the written word, and even more so when it’s complex, abstract, academic-ese.  Doesn’t mean I can’t do it -- sometimes I can’t.  But when I can, it takes me longer and it’s harder.  So I save it for situations as important as reading books that will be used to teach medical ethicists what might be right and wrong moral behavior with regards to people like me, people I just happen to strongly superficially look like, and people who just happen to strongly superficially look like me.  Books we’re not supposed to be reading.  I feel a little weird, like I’m some kind of secret agent or something, even opening a book like this, knowing that while my next trip to the hospital could be affected by what people have read in this book, nobody (at least, nobody likely to make such decisions regarding me) will expect me to have been able to read it.  Even a little of it.  i’m reminded of Astra Milberg’s “Letter to a Baby Who was Thrown from a Bridge” (context: Milberg has Down syndrome, so did the baby she’s writing the letter to):

I read in the paper (that part still surprises people)...

 Yeah.  That part still surprises people.  

Harrumph.  The following is what I think of that:

[Image description:  A very grumpy-looking stick, with moss and lots of mud and water.]  

[Image Context:  The original grumpy stick poem, a goofy poem I wrote about being grumpy.  @katisconfused provided the wonderful illustration (without even being requested!), which i can now tack onto any post when I would otherwise just say “I am the grumpy stick right now!!!”  The poem may be goofy but today, upon writing “That part still surprises people,” the grump is quite real.]

My doctor, when he is a bit of a grumpy stick and wants to be slightly snarky with anyone he’s training to take care of me who seems to doubt my capacity to comprehend things, tends to ask residents questions like, “When was the last time you co-wrote a paper published in the Journal of General Internal Medicine?”  (For me, 2013.  For a lot of them, never.)  But that sort of thing shouldn’t be necessary.  It’s just the sort of thing you end up saying when fed up with a certain level of condescension -- and when the opportunity exists, of course.

TL;DR:  People don’t expect people who go well into “I can remember this” age outside Peter Singer’s definition of personhood, to ever gain enough awareness of ourselves or the world to think about Peter Singer’s definition of personhood, much less apply it to ourselves and care about the outcome.  People don’t expect people who have become Peter Singer’s idea of a person, to routinely slide into his definition of a nonperson again -- and then back out of it into personhood again -- routinely and regularly.  People don’t differentiate between cognitive, intellectual, or developmental disabilities.  Even  people who do differentiate, rarely expect any of us in any one or more of those categories (except, maybe, people with non-cognitive developmental disabilities) to make it into college, grad school, or academia, or to be able to comprehend the kind of writing that comes out of such environments.  So we rarely end up writing in books like this one.  And nobody expects us to read them.  So I’m kinda thumbing my nose at all that by trying to read this, despite admittedly finding it very difficult (not all people with cognitive, intellectual, or developmental disabilities will -- but a lot of us will).  While also kind of deadly serious because holy fuck some of the things people think are legitimate debate topics... wow.

FOOTNOTES

Containing potentially long, but important, extra information.

(1) Cal Montgomery, a disability rights activist with developmental cognitive impairments, and a former grad student in philosophy, has written a very important critique of the shortcomings of some of Martha Nussbaum’s other work, in the Ragged Edge disability rights magazine.  That article can be found here:  Critic of the Dawn.  It is well worth reading whether or not you have any connection to Martha Nussbaum’s work at all.  But if you do happen to read Martha Nussbaum’s work, or the work of other feminists who write about disability from a very particular feminist perspective that doesn’t take the viewpoints and knowledge of disabled people into account, then absolutely read this article.  When Cal Montgomery wishes, towards the end of the article:

Nussbaum's view of disability is truncated by her unwillingness to consider the ways in which the physical and social environments limit our ability to develop human powers and to enjoy liberty and independence, the ways in which human dependence is highlighted or downplayed in a variety of ways. Her view is no more the view of disability than is one that says, "We may not move like you, but we think like you, and that's what's really important."

Her reliance on these three stories, on three books which explore -- in various ways -- the lives and loves and labors of family and paid caretakers, means that her view of disability, as expressed in these pages, is incomplete. She draws on an old and familiar series of clichés: disability as dependence, disability as innate limitation, disability as political voicelessness. She comes at disability through feminism and commits the traditional feminist errors about disability, rather than reaching for the vitality that a fully realized interaction between feminists and those concerned with disability can offer.

I believe that such vitality can be found in the work of authors like Jenny Morris, whose book Pride Against Prejudice is a classic in British feminist disability rights literature -- but very readable for laypeople as well.  I have not yet read Nussbaum’s chapter in this book, and I hope she has seen and truly taken to heart Montgomery’s critique, and come up with something worthy of the name of feminist disability academic literature. But from past experience in similar situations, i’m not holding my breath.  Montgomery goes on:

"Parents are the real experts," went the old parent-advocate slogan, challenging professional power over disabled lives. They demanded that their children be sheltered, nurtured, loved in the way that the best parents love their children. That was a wonderful advance: celebrate it. But more and more disabled people are now challenging parental power and the image of disabled people as children; and Nussbaum's article, which ignores those critiques, is much less than it could have been.

Nor does she accurately assess the present situation as compared to the past. She suggests that in previous generations, children like Jamie and Arthur, like the child Sesha was, would have died or been institutionalized. If she is thinking of reasonably well-off and recent Western families, she may be right. But there have been other families, other communities, in recent generations and earlier, that would have made a place for the Jamies and Arthurs and Seshas of the world.

Nussbaum's approach to "fair treatment" of disabled people draws on the popular images that give rise to Bruce, on the importance of all people "hav[ing] the chance to develop the full range of their human powers, at whatever level their condition allows, and to enjoy the liberty and independence their condition allows," on the supportive role that nondisabled people play. She assumes our limits are innate, our society benevolent. Those are not safe assumptions.

In discussing equality, she argues that many traits, like race and sex, should not play a role in determining social advantage. "[S]o, too, one would have thought, the facts that one person's body is more dependent than another's, or that one has a dependent aged parent, should not be sources of pervasive social disadvantage." But she seems oblivious to the extensive work that has been done on how -- not whether, how -- what we call impairment has been used to "justify" significant social disadvantage. The important critiques that have arisen from the paradigm that gives me Mary are ignored.

Following this well-trod path, Nussbaum urges that we learn to value those who cannot make the expected contributions to the larger community; she does not consider how the larger community limits who may contribute. She urges that we provide better support to those who are dependent, but she does not question how we decide who is dependent and who is not.

Again, Jenny Morris is a wonderful place to start if you’re looking for that “vitality that a fully realized interaction between feminists and those concerned with disability can offer.”  And I do hope that, in the meantime, Nussbaum has read Montgomery’s critiques of her writing and tried her best to understand them, take them to heart, and improve her ideas as a consequence.  

(I’m actually on her chapter right now, but it’s proving very difficult to read (see (3)) from a purely vocabulary-based standpoint alone.  Words are abstract, difficult, and often rare or used in rare combinations.  That’s pretty standard throughout this book, but each author does it differently, and some are harder than others to read.  Nussbaum is pretty frigging hard for me, for whatever reason -- in my mind the words feel like slippery fishes that I can’t get a grasp on, or unpredictable empty spaces where I expect to find dirt and rock and wood and other things of substance.)

(2) Harriet McBryde Johnson has written an excellent response to Peter Singer’s viewpoint on disability (infamous in the disability rights world, whether it gets interpreted accurately or not -- both happen for a variety of reasons, but regardless, his notoriety for dehumanizing disabled people in the service of animal rights is well-earned) in her New York Times article, Unspeakable Conversations.  She’s one of the few purely physically disabled disability rights activists I’ve read, who gets his ideas pretty accurate.  Probably because she’s a lawyer by training.  Anyway, her book Too Late To Die Young goes into even more depth on the subject, and is available both in ebook and physical book formats.

(3) Hyperlexia is a little-known learning disability that frequently goes along with autism.  It combines advanced skills in some areas of reading with skills lagging behind in other areas of reading.  It often goes along with other language-related disabilities, whether the person is also autistic or not.

A common description of hyperlexia -- sorry for being all medicalistic here, but I simply don’t have the cognitive energy to do otherwise -- is one like the following, which used to be the only recognized version of hyperlexia (emphasis my own where it’s bolded):

Hyperlexia is a syndrome characterized by a child's precocious ability to read, combined with difficulty in understanding and using verbal language, and problems with social interactions.  It was initially identified by Norman E. Silberberg and Margaret C. Silberberg (1967), who defined it as the precocious ability to read words without prior training in learning to read typically before the age of 5. They indicated that children with hyperlexia have a significantly higher word-decoding ability than their reading comprehension levels.

(That’s from Wikipedia’s hyperlexia page.)

It’s that last bit, the higher word-decoding ability than reading comprehension levels, that I was referring to when I said I was depressingly stereotypical.  I say that because I know many hyperlexic people who were wrongly assumed to not understand a word they read, because of things like not using standard intonation patterns when reading, or not being able to answer language-based questions about what they had read, all of which rely on far more skills than just reading or language comprehension to pull off.  But I actually fit the stereotype -- precocious decoding skills, with comprehension lagging so far behind it would be unbelievable to some of the people who carried out the testing that showed the comprehension lagging so far behind either decoding or expression.  (Comprehension lagging behind expression is a common trait in autistic people whose ‘expressive language’ is largely rote-learned echolalia without much conscious meaning attached.  Which is exactly the kind of language learning most common in hyperlexic kids.)  I’d love to be able to say “Nope, I really understood way more of those words than they thought I did, it was just my monotonous delivery throwing them off,” but I can’t.

I know this is a complete tangent, but anyone interested in learning current thought on different types of hyperlexia could do worse than to read the following article:  Hyperlexia: Reading Precociousness or Savant Skill?  

The answer the author, Darold Treffert (a big name authority in the way savant skills are getting defined these days), gives can be summarized as “Sometimes one, sometimes both, sometimes not quite either.”  By his definition, I have Hyperlexia Type II.  I have deep concerns about Type III, in which he lists off a number of characteristics that hyperlexic children share with autistic children:

These children also read early, often show striking memorization abilities, and sometimes have precocious abilities in other areas as well. They may have “autistic-like” behaviors, but, in my experience, they do not have Autistic Disorder. For example, they may show unusual sensory sensitivity (to sounds or touch or taste). Unlike children with Autistic Disorder, they are often very outgoing and affectionate with family, but reserved and distant with peers and would be playmates. They do tend to make eye contact and can be very interactive with persons close to them. There may be fascination with, or intense insistence on, routine and resistance to change. These children seem quite bright, inquisitive and precocious in some areas overall. Interest in, and mastery of, reading coupled with memory powers memorization is conspicuous and often quite amazing. There may other “autistic-like” symptoms or behaviors as well. But these symptoms and behaviors, prognosis ultimately shows, are indeed “autistic-like” and are not Autistic Disorder as such. Over time the autistic behaviors and symptoms fade and, as it turns out, these children then are quite normal (neurotypical) for their age. These are children who “outgrow” their autism, or, more accurately in my view, did not have Autistic Disorder or any of its variants to begin with. The prognosis for these children excellent and I have followed now a number of such cases via correspondence where the outcome has been just that—excellent.

The reason that I have severe reservations about this, is not that I think people don’t exist in the fuzzy borderlands between that which is considered ‘autism’ and that which is not.  (Hell, I have my doubts about the usefulness of autism as a category at times at all, but not for the usual reasons most people have doubts about it, if they’re going to have doubts.)  And it’s not that I don’t think people in those borderlands can move in or out of official definitions of autism within their lifetime.

My concern is that, like most definitions of autism, whether a person continues to be considered autistic depends on the outside observations of people, using definitions that deal with the outer appearances of autism and not the inner realities creating those outer appearances.  I have known way too many people who grow up wondering why they are so different, wondering why they struggle to do things that everyone else can do effortlessly, and in extreme cases, may even develop more difficulties doing things as they hit their teens or young adulthood.  Such people may never have been told they are autistic, so they will look into other things.  Sometimes they discover autism, and to their shock, they find out that they had been diagnosed as young children and never told.  Why?  Because their parents thought they’d outgrown autism and that the struggles would no longer apply to them so long as nobody talked about the matter or set them up to fail by treating them as incompetent.  Instead, many were set up to fail by depriving them of the tools that can come along with the best uses of categories like autism (to enhance self-awareness, promote growth and learning in their areas of strength, to meet other people like ourselves, to gain access to services and supports that require an autism label as part of the gatekeeping process).  Often, far from doing well in adulthood, such people have no tools, and no help, and crash and burn horribly.  The lucky ones don’t die of starvation on the streets unemployed.  And then there’s the unlucky ones.  

As someone who’s managed a mailing list for adult autistic people dealing with daily living skills problems (those are the skills that allow us to do things like cook, eat, dress ourselves, go grocery shopping, hold jobs, keep our homes at least minimally sanitary, have at least basic personal hygiene, etc.) I heard stories like this so often that I greatly distrust widespread stories of autistic kids who “outgrow” their autism and live happily ever after.  And I haven’t even gotten into what this does to people’s sense of identity and self-worth.  Quite often all those improvements were superficial and come crashing down in pieces when faking normality becomes impossible -- which can be as young as 12 and as old as 60.  

I once even knew a woman who had taken on the task of ‘pretending to be normal’ so heavily that she had no room for making decisions of her own or understanding much of what was going on around her.  Eventually her comprehension caught up with her.  She was in her fifties or sixties.  Married to a man who suddenly seemed like a complete stranger, and she couldn’t remember having decided to marry him.  Luckily, he was very supportive, loved her very much, and helped her through the process of getting to know him and getting to know herself again, for as long as it took.  Not everyone in circumstances like hers is so lucky.  

You generally think of the stereotype of the fake disabled person and the real one. But in the DD world there’s a stereotype of a disabled person who’s both fake and real.

Basically there’s a few variants but it all runs roughly the same. We are genuinely disabled in ways nobody will deny, although some people will argue about severity and such. But.

We are, because of our disability somehow, prone to lying, exaggerating, or being mistaken about our disabilities. We are manipulative and constantly convincing people we have problems we don’t have. We are too stupid to understand ourselves well so we imagine we have problems we don’t. We are kind of pathetic but not worth treating well in medical settings, and in fact my be deserving of special levels of contempt from the medical system. We are always, for whatever reason, tying up resources and getting in the way of them helping real people. Because we report problems that aren’t real.

Everyone knows a picture like that in their head that they can impose over the top of real DD people seeking medical care. When that happens, we are doubted at every turn, described as manipulative and attention seeking, and denied medical care that anyone else in our situation would get. And somehow in this twisted version of the fake disabled person, in their heads, our fakeness is weirdly tied to our real disability that they aren’t usually denying. Like our developmental disability somehow causes us to be mistaken at best and lying and manipulating at worst. Sometimes this comes with a toxic kind of pity for us.

The reality of course is that if anything DD people under report medical problems, and tend to report them accurately as anyone else would. Sometimes more accurately because we often only report them when they get horrible, for fear of being punished. Even when, like me, we have ridiculous levels of proof of every diagnosis we have, this concept of the real disabled person who is simultaneously not real, saves them from ever having to confront the reality of our medical self-reporting. They can always say our res all disability makes us prone to confusion, lying, exaggerating, manipulating, etc.

I assume crazy people go through something nearly identical, and so do lots of other disabled people. I’ve just spent more time in the DD world so I’m writing about the version of this most familiar to me. There’s probably dozens of variations on this stereotype.

I just want to point it out because I suspect the DD and crazy versions especially are very strong factors when my self descriptions of symptoms don’t get taken as seriously as they should. They either think I’m confused and mistaken because of my disability, or manipulating and exaggerating because of my disability. It’s different and far more complicated than simply being doubted altogether.

Also remember every disabled person ever has – either because of being human or because of the pressures put uniquely on disabled people – lied about their disability, faked or exaggerated something, been confused and thought they had symptoms they don’t, created symptoms that wouldn’t be there by worrying too much, imagined symptoms they don’t really have, etc. Everyone. All of us. Some more than others but these are unavoidable things. And when we get wrongly advised too often instead of getting mad, we turn it inward, remember we’ve done these things, and wonder if they’re right. For the most part they aren’t right and worrying like that is doing their job for them.