Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Tag: representation

Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

Autisticat

[image description: a silhouette of a black cat with tail bent into a heart and a rainbow lemniscat as a collar ornament] Autisticat was created by strangerdarkerbetter

The Journal of Child Psychology and Psychiatry published an editorial perspective by Dr. Simon Baron-Cohen in their June issue that is only now beginning to get some media coverage. In his essay, titled “Neurodiversity – a revolutionary concept for autism and psychiatry,” Dr. Baron-Cohen makes a solid case through most of the piece for viewing autism through the lens of the Neurodiversity Paradigm.

 

From beginning to end, the piece is filled with what would otherwise be marvelous messages from one of the most prominent autism researchers in the world. Dr. Baron-Cohen speaks from a huge platform, so it is greatly heartening to read positive statements from the abstract — “Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment.” —  to the conclusion — “genetic or other kinds of biological variation are intrinsic to the person’s identity, their sense of self and personhood, which seen through a human rights lens, should be given equal respect alongside any other form of diversity, such as gender.”

 

If the entire essay actually promoted the Neurodiversity Paradigm, it would truly be cause to rejoice. Having Dr. Simon Baron-Cohen on board  would represent the biggest boost the Neurodiversity Movement has ever seen. Sadly, there are two major stains on Dr. Baron-Cohen’s editorial. The first is his use of person-first language throughout the essay. How can Dr. Baron-Cohen claim to believe that autism is “intrinsic to [a] person’s identity” yet not even give a nod to identity-first language?

 

The importance of Dr. Baron-Cohen’s choice of terminology pales, however, in light of his choice to fold the idea that only some Autistics are not disordered, while others are, indeed, disordered (thus, one would assume, Dr. Baron-Cohen views those Autistics as “requir[ing] cure or treatment”.)  Dr. Baron-Cohen wrote, “‘Disorder’ should be used when there is nothing positive about the condition, or when despite trying different environmental modifications, the person is still unable to function. […] Using these definitions, we should remain open-minded that some forms of autism are properly thought of a disorder, and others not, given the heterogeneity that exists within this diagnostic category.”

 

Dr. Baron-Cohen has declared that some Autistics have nothing positive about their neurology.  And what of the second half of his definition of disorder? Those Autistics who are “unable to function” are disordered while, logically, those who are “able to function” are not disordered. But what does “function” mean? Dr. Baron-Cohen has gone one step beyond the “high functioning/low functioning” paradigm that the Neurodiversity Movement so strenuously speaks against and straight into functioning/not-functioning as his dividing line between who is permitted the human dignity of “identity, […] sense of self and personhood” and who must be “cured” of their “disorder.”

 

Not only is this attitude not at all in line with the Neurodiversity Paradigm, it is terrifying. Who gets to decide what “functioning” means? Who gets to draw that line between person and not-person? Are my friends who cannot drive (not all of whom, I should note, are Autistic) still “functioning”? What about those (also not only Autistics) who can’t manage money? Those who can’t work a job (you guessed it: also not only Autistic friends) and live on disability payments? Those who are unable to speak (yes, even these friends are not all Autistic) with their voice? Obviously my answer is that all Autistics have personhood and “function” just fine.

 

Dr. Simon Baron-Cohen has inserted a chillingly genocidal twist into his version of “Neurodiversity” that is so overwhelmingly negative it erases any warm feeling I might have had about the marvelous things he says in the rest of his essay. I am left with the feeling that Dr. Baron-Cohen does not actually understand the Neurodiversity Paradigm and is merely repeating buzz phrases in, at best, an attempt to remain relevant and, at worst, an attempt to sabotage the Neurodiversity Movement.

 

The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood. Dr. Baron-Cohen needs to study Neurodiversity further and either sign on to it as-is or realize that his work is incompatible with the Neurodiversity Paradigm and stop trying to re-make it in his own image. The Neurodiversity Paradigm declares everyone worthy and valid, not merely those upon whom some official seal of medical approval has been bestowed.

A is for Autism Acceptance

This post originally appeared on April 1, 2015. The book that resulted from this Autism Acceptance Month project, The ABCs of Autism Acceptance, is available from Autonomous Press.

Autism Acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses.

[image description: A quote card, white with olive green highlights. It says “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses…” – Sparrow R. Jones. Beneath the quote is the word ACCEPTANCE in all capital letters, an ornate font, and olive green. The bottom left corner of the image says FB/UnBoxedBrain, indicating the facebook page of the creator of the quote card.]


A is for Acceptance

You may have noticed in the last half-decade or so that there is a growing trend toward speaking of autism acceptance instead of autism awareness. By now, most of you probably know why people are making that choice, but just yesterday I saw a lot of people arguing about the topic, so I think we still need to make it clear.

Autism awareness, in and of itself, is not inherently bad. By now, most people are aware that there is a thing called autism but, in my experience, most people are not very aware of what that autism thing actually is. So I do, at least partially, agree with the people who say we still need more awareness.

What I have a problem with is the form that awareness tends to take.

A week ago, I had to stop listening to the radio because all the stations were already gearing up for April with lots of “awareness” and lots of advertisements about awareness events. I heard a lot about children with autism and nothing at all about Autistic adults. Not only do we “age out” of most services when we turn 18, but we also become invisible. It’s as if the entire world stops caring about us once we are no longer cute children to worry about and, instead, inconvenient adults to be stuck with.

I heard a lot of scare talk, including hearing us repeatedly compared to diabetes, cancer and AIDS. Diabetes, cancer and AIDS kill children. Autism does not. Diabetes, cancer and AIDS are illnesses laid on top of a child’s underlying identity — they can change a child’s philosophy but they do not change innate aspects of their identity. Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism — it’s autism all the way to the core. Autistic children do not “go into remission,” they develop coping skills and they mature into Autistic adults, and they work to learn ways to communicate with those around them. There might be suffering that can be alleviated — seizures brought under control, gastrointestinal disorders treated, methods learned and sometimes medications taken for mitigating anxiety. Autistic adults often do not resemble the Autistic children they once were — we grow and develop all our lives — but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how “indistinguishable from their peers” they become.

At the center of the autism awareness movement is an organization known as Autism Speaks that functions like a giant magnet, drawing all donations to them. In the ten years that Autism Speaks has been around, local organizations have watched their funding dry up. Autism Speaks dominates the autism charity scene now and, as a result, they have the power to set the tone when it comes to “awareness.” And that tone is one of despair and misery. We are portrayed as burdens who break up marriages and destroy the lives of those around us. We have been compared to “lepers” (an outdated term for people with Hansen’s disease) and our parents to saints for taking care of us. The awareness that is being put forth is shaped around a rhetoric of fear. Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. Only one Autistic person was ever accepted in a leadership role and he resigned, saying, “No one says the Cancer Society does not speak for them.  No one describes the Cystic Fibrosis Foundation as an evil organization.  All that and more is said of Autism Speaks every day.  I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

So that is autism awareness. That is what we are rejecting.

What is autism acceptance? Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.”” – Kassiane Sibley

“Acceptance is about recognizing that an autistic person is, and will always be, different but not less — even as some challenges are addressed. ” – Amy Sequenzia

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long

“Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do. Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn’t that different. We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people. We need people’s actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don’t. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.” – Alyssa

“Good teaching is based in deep respect for the individual, the cognitive learning style of each student, the shared excitement about the topic of study. Best practice in teaching autistic students isn’t any different, though these faculty would be insulted if I told them so.” – Carolyn Ogburn

“Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be “normal,” he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?” – Kymberly Grosso

“If you have the autism acceptance song in your heart, add Paula and Estée’s voices to your blog rolls, Subscribe to their blogs. Tweet, ‘like’, and show your respect and support to these powerful women. Don’t allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.” – Kerima Çevik

Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are “typical” just because they can’t see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.

“You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you.” – Paula C. Durbin-Westby, founder of Autism Acceptance Day/Month/Year/Decade

ABCs of Autism Acceptance

[image description: a full-color image of the book cover of The ABCs of Autism Acceptance by Sparrow Rose Jones. The cover features a semi-abstract drawing of the alphabet done in rainbow colors and a doodle style of drawing. Copyright 2016, Sparrow Rose Jones and Autonomous Press.]

My Life Is Not a Tragedy

This is a re-post of a blog post that was originally posted on January 13, 2014.  It has been slightly edited from the original: I have come out as transmasculine since this essay was first published and so I have changed my pronouns in the essay accordingly. I have also added a clarifying side note to make sure readers know that I do not believe any human being at all, ever, is a tragedy!


my life is not a tragedy

[image description: A green bordered meme tile for #boycottautismspeaks and #PosAutive Action for Social Justice that quotes this essay, saying “My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy.” – Soarrow Rose Jones]

I am a person who tries my hardest to give everyone the benefit of the doubt. I realize I have a strong streak of suspicion in me, so I aim for the best possible view of others and attempt to judge them innocent until proven guilty.

Lately, the organization named Autism Speaks has worked really hard to provide me with that proof. Exhibit A: The  “Call to Action” by Suzanne wright (the co-founder of Autism Speaks) that said that I  and those like me are unspeakable horrors to our families who live in despair and depletion, ill and broken, because we are so awful to cope with. Exhibit B: the latest documentary film from Autism Speaks, titled, “Sounding the Alarm.” For an organization that tries to claim they are not alarmist, that is a pretty fishy film title, right?

Those of you who have followed my blog for a while know that I was an incredibly difficult child to raise. I’ll be honest: I pretty much did deplete my mother (although she has bounced back quite beautifully these days.) And you know I’ve had a hard life, with bullying, abuse, poverty, homelessness, and chronic unemployment. But you know what else? I would estimate that 90% of my difficulties in life were not caused by being born Autistic — they were caused by other people not coping well with who I am. People who don’t like the way I move, the way I speak, the things that catch my interest end up pushing me and bullying me and excluding me in ways that make my life miserable. Most of the “tragedy” of my life was completely avoidable if everyone around me had been encouraged to be a little more open-minded and discover the incredibly loyal friend or the hard-working and dedicated employee behind the quirky behavior and different way of viewing the world.

You see, my life only becomes a tragedy when someone else chooses to frame it that way. And that is objectifying toward me and people like me and I will explain to you why I feel that way.

Human beings — at least those living in industrial “Western” culture — have basically two ways to view lives. There are lives, plain and simple. These are what they are living, what their friends and family are living. Regular lives have ups and downs and long, welcome stretches of “boring” everyday stuff. There is no overarching framework because they aren’t stories; they are lives.

Stories are the other way to view lives. We view imaginary lives that way all the time when we watch television and movies. We also frame certain people’s lives as stories when we write about real people in books or magazines. Stories do not have long stretches of everyday “boring” regularity, because stories are about heroes and villains — stories are drama and drama is shaped by our theatrical forms that box everything up as Comedy or Tragedy.

You’ve seen the masks, right? The iconic symbol of the theater with one mask laughing in hilarity and the other weeping openly. This is how we frame stories and this is why people who want to box me up and objectify my life so often strip all the complexity out of my “story” and try to fit it into comedy (“look at that ridiculous ******!!”) or tragedy (“Poor thing, he’s so pitiful. It’s inspirational to me that he even gets up every morning and goes on living day after day!”) People who want my life to be a story and not just a life are required to objectify me and amputate most of my actual life to get the essence of me into that little box they need to put me in so they can make their point.

Autism Speaks’ point is that autism is evil, Autistic people are a tragedy, families of Autistic people are broken on the wheel of autism . . . oh, and give us lots of money. They try to claim that I can’t be upset about the things they say because they aren’t talking about me, they’re talking about “those Autistics.” You know, the cardboard cut-out caricatures of Ultimate Tragedy that never mature beyond infancy and thus grow up to be Useless Eaters and Burdens to Us All. I am “too high functioning” (meaning I continued to grow and develop and change throughout the course of my life and am now able to type words and lift a spoon to my mouth unassisted) and I am not who they mean. (side note: No Autistic person at all ever is that reductionist tragedy.  We all grow and develop and strive to flourish in our lives. None of us are a one-dimensional tragedy, regardless of who we are and how our humanity manifests.)

Well, if they aren’t talking about me, they need to stop counting me in order to make their massive “tsunami” declarations of millions and millions of us who are struggling and suffering (unless you give lots of money to Autism Speaks, of course. That will somehow magically stop our suffering . . . . well, no, it won’t. So they need you to give them some more money. Don’t stop yet! There are still MILLIONS AND MILLIONS of Autistics out there! Tragedy! Alarm! Crisis! Pandemic! . . . keep that money coming.)  If there are so many millions of us, then they *ARE* counting me and people like me so how dare they say I have no right to be distressed by their rhetoric about ME?

Would you like to know how *I* read the story of my life?

Sure, there are hard times. I struggle a lot. But I also accomplish and achieve a lot. I would like less struggle. I would like a LOT less struggle. But I would not like no struggle at all, because having something to push against adds to my strength. I want to have some challenges so that I can have some accomplishments. I want to have some difficulties so that I can have some growth. As Robert Browning said, “a man’s reach should exceed his grasp”. I would like my grasp to come a lot closer to my reach (wouldn’t we all?) but I want there to always be something just brushing my fingertips, tempting me to press on. I never want to fulfill all my dreams, unless I grow new dreams in the meantime. I want there to always be someplace new to go, something new to strive for. I would like those things to be new skills, new arts, new travels and people. Right now, some of those ungrasped things are more fundamental. Right now, some of those ungrasped things are unmet needs, not unlived dreams. There are hard times and things I would like to improve, but that doesn’t make my life a tragedy.

If I had to define my life in one word, it would not be “tragedy.” It would be “joy.” I have an abundance of joy in my life. I have always had joy in my life, even during the hard times. I believe I could be left sitting in a garbage heap and manage to find something beautiful there.

Suzanne Wright painted her picture of what our lives are. Let me paint a few vignettes of my own, one, single, Autistic life:

It is summer and I am walking. The brush is scrubby and dry and tiny black-and-white checkered lizards bake in the sun on flat rocks. Raptors wheel high in the sky, nearly invisible against the glare of the sun. The trail I’m on dips lower, into a grove of evergreens, and suddenly I am wrapped in the sound of scores of little birds, singing in the trees. A swarm of dragonflies seemingly materialize from nowhere and I stop walking, transfixed by the beauty of the sun glinting rainbow sparks from their diaphanous wings as they circle lazily around my head.

I am tucked away in a dusty corner of the library, reading. What am I reading? It must be a comic book of some sort, because I read intently, then suddenly burst into laughter, nodding my head and shaking my hands with excitement and happiness. Then I go back to intently reading with furrowed brow before bursting again into childlike laughter. Curious to see what is causing such reactions in me, you draw nearer to discover that I am reading a collection of dozens of mathematical proofs of the Pythagorean theorem.  That beautiful moment when all the pieces fall into place is so glorious and profound to me that I am helpless to do anything but laugh with delight when I get to that point in each mathematical proof.

I have a new musical instrument and I am exploring the sounds it makes. I am comparing it to every other type of instrument I have played before — and there are many — to see how it is similar and how it is different. Within five minutes, I play my first simple song. Within five days, I am playing as if I have been working with that instrument for months. I do the same things with languages — writing letters and poetry in grammatically correct Swedish three hours after I opened the parcel containing a Swedish-English dictionary and began studying the sentence structure of the language. I do the same thing with anything that is based on patterns because I am a pattern thinker. I do not think in words. I do not think in pictures. I think in symbols and patterns. Any process or thing that succumbs naturally to pattern thinking is an easy delight for my pattern-seeking mind and heart.

I am exhausted, so I lay down to listen to music and maybe sleep for a couple of hours. My cat gets excited to see me recline because I am creating his favorite place in the whole world — I am becoming his cat mattress. He runs to me and climbs on top and we adjust ourselves to find the spot of maximum comfort for both of us, the two of us so in tune with one another that words are unnecessary. We go beyond communication; we commune. I wrap my arms around him and bury my face in his kitten-soft fur and he purrs and wraps his paws around my head. We lay there together, two souls breathing as one, rejuvenating each other with the priceless love and trust that connects our gentle spirits.

This is my life. This is not a tragedy. I am not a statistic. I am not a pawn to be used to manipulate you into giving money to a charity that gives about 4% of its income to actually helping Autistic people and our families and gives 44% of its income to researching ways to wipe me and my kind off the face of the Earth. (And another 22% to fundraising efforts that paint us as a tragedy so that they can bring in more money to find more ways to create a world where people like me are extinct.)

 

My life is not a tragedy. My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy. This is why Autism Speaks does not speak for me. I am Autistic and I can speak for myself. (And on those days when I can’t, I can write for myself. And on the days when I can’t even do that, I’m still not a tragic pawn to be moved across the board of someone else’s political and financial agenda.)

I am not a horror. I am not a destructive force. I am not a tsunami or an epidemic. I am a human being, living my complex, messy, sometimes boring, sometimes gloriously beautiful, everyday life.

My life is not a tragedy. I am a human being and we are too complex to be reduced to such abject objects. See us . . . really see us. We are priceless beyond measure. We are not tragic. Please do not assist any person or organization in attempting to reduce our beautiful and complex lives to little more than a theatrical stage show.

Our lives are not tragedies.

Is Autism a Disability? Are Autistics Disabled? (Are These the Same Question?)

sketch sparrow

[image description: a photo of a middle-aged transmasculine person in a van, half-rendered into a sketch, using the Heisenberg setting in Prisma, turned down to 54%. Copyright 2016, Sparrow R. Jones]


I don’t like to engage in serious conversations on Twitter because I’m so quickly overwhelmed by the format, but yesterday I ended up in a corner of a discussion that spread throughout much of the Twitter Autistic community, as evidenced by this other excellent blog post addressing a different aspect of the conversation: Autism does not reside in a medical report.

My corner of the conversation centered around the question of whether autism is a disability or not. The same person who stirred Sonia Boue to write the excellent post linked above got into it with one of my Twitter contacts on a different but related topic:

Tweet by Grit Tokley

[image description: A twitter exchange. Grit Tokley writes: “I’m well aware of the social model of disability, and I don’t considering autism to be a disability in any sense, tyvm. @aspiemermaid” Autistic Elf (Aspiemermaid) responds: “@GritTokley ok. So why are you so hung up on getting it medically diagnosed?”]

So, here I am, unpacking the social model (and a couple of other models) of disability and discussing the questions: Is autism a disability? and Why does it matter whether it is or not?

Because, of course, the bulk of the following Twitter discussion centered around strong assertions that autism is not a disability, along with strong assertions that everyone is entitled to their own opinion and we must all agree to disagree.

*sigh*

So, with that.

Three Models of Disability

There are many different models of disability, but I would like to focus in on three of them as being the most mainstream and/or the most useful for various groups of people.

The Medical Model of Disability

This is the most mainstream model of disability and the one you’re most likely to have seen before. One participant in the Twitter discussion shared this definition of disability that pretty well sums up the nicest version of the medical model you are ever likely to see:

medical model disability

[image description: a white background with black text reading: “Disability is an impairment that may be physical, cognitive, intellectual, mental, sensory, developmental, or some combination of these that results in restrictions on an individual’s ability to participate in what is considered “normal” in their everyday society.”

It’s sweet of them to put the word normal in quotes. Even with that nod, the medical model is basically saying that disability is entirely contained in the person identified as disabled. It’s all on you if you have impairments that restrict you. If you’re lucky, people will have a little decency and put some ramps in front of government buildings or braille placards on elevators, but mostly you just have to accept that you’re not normal and be grateful for what crumbs people toss your way. After all, you can’t expect everyone to go to the trouble and expense of making special accommodations just for you, right? Where would we be if we had to accommodate everyone’s impairments?

That’s the medical model and that’s why so many disabled people reject that definition of disability. But it’s still a really popular definition. And, as the person who shared the image pointed out, by this definition, autism is quite clearly a disability. Something like 99.9% of the Autistics you will meet have at least one of some kind of sensory issue that makes life difficult if/when they encounter sensory assaults (or situations in which they require extra sensory stimulation in order to stay regulated.) By definition, we are developmentally disabled, whether you use the medical model’s terminology (developmental delay) or recognize our development as being on a different trajectory from the mainstream. It’s pretty clear that, within the medical model we are disabled.

The Social Model of Disability

This is the model I see most often in the Autistic activist community. The social model was developed in the 1970s by British disability theorists who did not appreciate the way the medical model dumps all responsibility for disability and accommodations thereof in the laps of disabled people. The social model was a great  improvement over the medical model, particularly in the area of human rights.

The social model posits that disability does not actually exist. Those states of being that are labeled as “disability” are natural variations in the human condition and all human beings require support and accommodation from society in order to survive. For example: you probably eat food that someone else grew, someone else processed and/or packaged, someone else drove to your region in  a truck using fuel gathered and processed by someone else, driving on roads built by others and paid for collectively through taxation. All of the steps and people required to get food to the supermarket, farmer’s market, soup kitchen, restaurant, institutional kitchen or whatever location it is where you go to feed yourself are supports and accommodations that society approves of and works hard to keep in place.

When the need is a mainstream one, the supports and accommodations are called “infrastructure.” When the need is a divergent one, the supports and accommodations are called accessibility measures. According to the social model, “disability” is a social construct and “disabled” is what society is doing to you if it decides that the supports and accommodations you require are too much trouble and you are not worth the expenditure of time, energy, money, and other resources that would be required to make society accessible to someone like you.

Within the social model of disability, Autistics are disabled (by a society that does not value Autistics sufficiently to support and accommodate us) but autism is not a disability because disability does not exist, being merely a social construct that makes it convenient for those who would like to disable us without feeling guilty about it.

The Social-Relational Model of Disability

Finally, we have my favorite model of disability, the social-relational model.  The social-relational model is less well-known, having only been developed in the 21st century, by disability theorist Solveig Reindal1. The need for the social-relational model was clear before Reindal wrote about it, though, and I’ve also noticed some people who are unaware of Reindal’s work trying to re-shape the social model into something closer to Reindal’s vision, due to dissatisfaction with the social model. No need to re-shape the social model, though, when the social-relational model already exists.

The major dissatisfaction activists and theorists were finding with the social model was that disabled people could not express any dissatisfaction with the experience of being disabled without being viewed as “traitors to the theory.”2. Reindal’s new formulation of the social-relational model moves to a third position in which society is still held accountable for disabling people but theory does not ignore the body or the real struggles some people have with disability, independent of society’s support and accommodations or lack thereof.

While the social model claimed that disability does not exist, being purely a social construct evolving out of views of those constructed as disabled as being “lesser” in some way, Reindal acknowledged that those who are identified as disabled do, indeed, have some type of impairment. These impairments – what the medical model calls “disability” – Reindal labeled as “barriers to doing.”  In contrast to impairment, Reindal writes about “being disabled” as it is defined by the social model as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being. 

Within the social-relational model, I have impairments (although not all Autistics have social-relational impairments, according to what others have told me) and I am disabled by society’s lack of support and accommodation for my needs. I have a disability and I am disabled. I have barriers to doing, which I find frustrating, and I have barriers to being, which I find devastating.

Why Is All This Important?

If you have read this far, you may be asking yourself why any of this matters. As an old friend used to say, “how will this help me shop for groceries?”

This is important because these are not just words and theories. This is important because these different frameworks for viewing people’s lives are the structures that underlie how we are treated, what assistance we get or do not get, even whether people feel we have sufficient humanity and “quality of life” to deserve to continue living. It is very important to understand these seemingly academic topics, because these sorts of thoughts are beneath the doctors’ attempts to deny Mel Baggs a feeding tube to keep Mel alive. These thoughts are behind the choice of those administering the transplant registries to deny Paul Corby a spot on the heart transplant list.

These questions and ideas and words are not just exercises in navel-gazing. They are the basis upon which life-or-death decisions are made about us. Too often these decisions are made without us, because the operating definition of disability/disabled is one that places us in an infantilized position where we are not considered able even to advocate for ourselves3.

When I turned to my Facebook friends and asked how they felt about the question of whether autism is a disability or not, I got an overwhelming flood of responses — there were over 200 responses to the question. That discussion really helped me in shaping my thoughts about the rather distressing day I had on Twitter and the nature of disability/being disabled.

Two comments in particular resonated very strongly with me. I found them both thought-provoking and comforting after all the Twitter distress.

Cas Faulds said: “our current society and our current systems means that we are disabled and if we’re working under the impression that we aren’t, we’re setting ourselves up for failure.”

That’s very important. Denying that we are disabled (which I see a lot of Autistics doing these days) runs the risk of setting ourselves up for failure when we decide that there is no real difference between Autistic and non-autistic. This opens the door for the struggle I’ve faced most of my life, believing I kept failing because I just wasn’t trying hard enough. Understanding that I am disabled has helped me to forgive myself for those very real things I just can’t do — whether due to inherent impairment or being disabled by society.

No matter how “disabled” is philosophically constructed, I am definitely disabled and acknowledging that fact gives me the space to re-frame situations and figure out accommodations, whether self-accommodations or accommodations I request from others.

My friend, Chris,  said: “there’s an immense spectrum, from not disabling to severely disabling, and someone pretending their end is the only one that should be called “autism” — well that’s pinging ME really hard as supremacism.”

Yes! The people who kept telling me that autism is not a disability and Autistics are not disabled said that I would hurt the image of autism by insisting that it is a disability or that Autistics are disabled. I felt very excluded and erased because I am quite disabled.

When the discussion was framed in terms of division and supremacism, the first thing I thought of was Michael John Carley’s distress about dropping Asperger’s from the DSM because he didn’t want to be mistaken for someone with more challenges.

The people on Twitter might be right. It might just be a matter of opinion. It might be that autism is not a disability (“but you can call yourself disabled if you want to.”) It might be that we should just all “agree to disagree.”

But I think we should tread carefully on declaring that autism is not a disability when there are so many of us who are so very clearly disabled., regardless of which model of disability one chooses. I know that I would rather be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device” (to quote Carley) than throw my Autistic siblings under a philosophical bus because my support needs are different from theirs.

So….my stance? Autism is a disability. Autistics are disabled. Society needs to work harder to support and accommodate us all, in all our variety, with all our different types and levels of support needs. We are human beings, expressing part of the infinite diversity humans express in infinite combinations. Accept us. Support us. Value us. The fact that we are disabled only means that society needs to think more carefully and work more diligently to craft an accessible world we all can live in, together.


1. Reindal, Solveig Magnus. 2008. “A Social Relational Model of Disability: A Theoretical Framework for Special Needs Education?” European Journal of Special Needs Education 23 (2): 135-46.

2. Shakespeare, Tom, and Nicholas Watson. 2002. “The Social Model of Disability: An Outdated Ideology?” Research in Social Science and Disability 2: 9-28.
and
Thomas, Pam, Lorraine Gradwell, and Natalie Markham. 1997. “Defining Impairment within the Social Model of Disability.” Coalition Magazine July.

3. This is why many people dislike my stance on not calling activists “self-advocates.” They have fought hard for the right to self-advocate and do not want that label taken from them. I do not want it taken from them, either. When I am advocating for myself, I am most definitely a self-advocate and I have often been in situations where I was not permitted the basic human right of self-advocacy. My complaint is with using “self-advocate” as a euphemism for “activist.” When Mel Baggs insisted on a feeding tube, Mel was self advocating. When hundreds of other Autistics and allies phoned and wrote to the hospital, demanding Mel’s wishes be respected, they were not self-advocates; they were activists and advocates.

Don’t Call Me a Self-Advocate

This is a re-blog of a post originally made on February 11, 2013.


a boy and his cat

[image description: a black and white photo of a transmasculine person snuggled in his sleeping bag on a cold morning, interacting with his cat who is also snuggled against the chill. Photo copyright 2016 Sparrow R. Jones]

I don’t self-identify as a self-advocate.

Oh, I am a self-advocate in that I seek to fill my needs and (most of the time) am able to ask others to help me get what I need. I am a self-advocate in the sense that is usually meant when goals are set for an Autistic that include the goal of helping the Autistic person learn to navigate systems, ask for what they need, explain their autism to others, and so forth. There is nothing wrong with self-advocacy and I strive to be a self-advocate and to encourage others to do the same.

But self-advocate is not my self-identity. I am an advocate. I am an activist. And so are most of the Autistics I notice being called — or calling themselves — self-advocates.

I’m not writing to try to tell others how to self-identify. I believe everyone should have the autonomy to self-identify as they see best and the rest of us owe them the respect of calling them what they have identified themselves to be. It is a cornerstone of human dignity to be able to say, “I am this,” and have others respect you as such. I will cheerfully call anyone a self-advocate who chooses to identify as a self-advocate. And I don’t judge or seek to diminish those who choose that identity to describe the outreach they do. It’s just that it’s not my identity.

I do think I understand how this term came to be so widely used. Our allistic (not autistic) allies were advocating for us (the best ones were doing so by doing what Kassiane calls “signal boosting”— that is, repeating our message for those who will only hear the words if they come from someone of a different neurotype) and so they came to be called “advocates.” Someone noticed that Autistic people were advocating as well and they decided there should be a special word so people knew that the words (or art, or music, or performance) were coming from an Autistic person themselves. Digging into the pre-existing autism terms, they came up with self-advocate and ran with it.

The problem is the term is dismissive. It is demeaning. It is en-small-ing. It is infantilizing. And it is wrong — we are advocates, not self-advocates, when we do and say the things we do and say to try to make the world a better place for all Autistics. That’s the key there: all Autistics. We are not self-advocating; we are advocating for our entire tribe.

It shouldn’t even feel natural to call us self-advocates when we come forth to speak and write about how Autistics are treated, what Autistics need, what Autistics deserve. I ask you this: do all of these sentences sound natural and right to you?

  • The Reverend Dr. Martin Luther King Jr. was an important African-American self-advocate.
  • When Rosa Parks refused to sit at the back of the bus, she was engaging in a bold act of self-advocacy.
  • During Vietnam, Buddhist monks became self-advocates by setting themselves on fire.
  • The SDS was a student-run organization of political self-advocates.
  • The National Organization of Women regularly engages in self-advocacy surrounding issues of importance to women.

Do you begin to sense why I have issues with the term “self-advocate?”

When I started Googling to see if I could find other Autistics who were not pleased with the label “self-advocate,” I was not surprised to see that I am not the first person to take issue with this label. The first page I found belongs to Corina Lynn Becker, who writes, “In my opinion, self-advocacy is asking for a glass of water. This is not what I do. I am not asking for my human rights; I am demanding them, not only for myself, but for the rest of my community.”

When we are called self-advocates, it is easy to ignore what we say about the current generation of children who are growing up Autistic. “oh, she says some very important, provocative things! But my child is different. My child will never speak or drive a car or get married. She is not talking about my child; she is a SELF-advocate.”

No, we adult Autistic advocate are not like your child. We are not like your child because we are not children; we are adults! You cannot automatically tell what our childhoods were like by just looking at us or hearing us or reading our writing. Calling us self-advocates is the easiest way to disregard something you don’t even know.

When we are called self-advocates, it underlines the myth that we have no empathy by positing us as activists who are only advocating for ourselves. Because how could an Autistic advocate for other Autistics? Without empathy, we must only care about our own personal situation, and especially not the lot of those we will never meet. (That, in case you didn’t realize, was sarcasm.)

Sure, I write about myself. I write about myself a lot. But my stories are offered up as case studies, as examples. I advocate more for other Autistics than I do for myself. When I first re-opened this blog, I wasn’t sure what my focus was. Over time, my focus has become very clear to me and it is to do whatever I can to protect the children and to help them grow up strong and free with happier childhoods than I was able to have and healthier adulthoods than I have ended up with. I don’t write to change my world. I doubt that much of what I write can change my world. My chance has come and gone; I write to change the children’s world and to do what I can to build a better future for autism and for the Autistic. This is not self-advocacy. This is activism.

Another Autistic I found writing against the idea of being called a self-advocate when one is actually reaching out in advocacy for all Autistics is Neurodivergent K. She writes: “Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it’s seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what “real” advocates have to say. I’m just talking about myself, you see. They’re doing the really real work, for we need the great allistic savior! We’re cast as sidekicks in our own movement.”

K suggests that it is the allistic advocates who need the special term, not us Autistics. She says they can be allies or parent-advocates while we take back the word “advocate” for ourselves. I agree with her. Or just call us all advocates, for that matter, because why does there even need to be a separation? If we are all doing battle to improve conditions for Autistics (and have no doubt that if we improve the world for us, it will improve for everyone. This is how it has always gone in the past when an oppressed group finally won the fight to be viewed as fully human beings) then we don’t even need an “us vs. them.” We are all advocates. We are all activists. We are all struggling to be part of the solution.

 


Important conversation on this topic moved from the old blog:

Posted by chavisory on February 11, 2013 at 10:36 am 

I’ve always been uneasy with the term and couldn’t really put my finger on why…this post captures some of it. There’s an implied condescension…indeed, like we aren’t the “real” advocates. And it creates an illusion wherein a lot of parents can think “My child can’t self-advocate because she can’t write like these people can, so these autistics are a fundamentally different group of people who have nothing to do with my child’s needs and I don’t have to listen to them.”

And also I agree that I’m not primarily advocating for myself–I have an education, I have control over my own life, I’ve more or less successfully carved a little niche in the world for myself–I’m standing up for other autistic and neurodivergent people to be treated with respect and acceptance, and for other children today to be thought of as capable and having rights and as being future adults and not eternal children.

What I think of as “self-advocacy,” when I was a kid was just called “standing up for yourself.” Funnily enough, no one liked it when I did it back then, either.

Posted by Zr on February 12, 2013 at 10:20 am  

Apparently,
Autistic people are “self advocates”, Neurotypical people are “advocates”.
Autistic people have “special interests”, Neurotypical people have “interests”.
Autistic people have “special needs”, Neurotypical people have “needs”.
Autistic people have “splinter skills”, Neurotypical people have “skills”.
Regardless if it’s the same thing(s) in both cases.
Madness.

 

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