Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Identity

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.]

What Would An Astronaut Do?

cloudy sky

[image description: looking out into space from planet Earth during daytime.  In the upper left corner of the picture, tree branches are silhouetted against an ethereally glowing sky. The late morning sun is hidden behind a low-hanging bank of clouds, illuminating them against a sky that ranges in intensity from clear aqua to dark lapis. Photograph copyright 2016, Sparrow R. Jones, Taken in southeastern Gainesville, Florida.]


I winter in Florida, because it’s warmer and where my mailing address is.  Although I am nomadic, my official state of domicile is Florida.

I winter in Gainesville, because the city has laws to protect people like me. So long as I am legally parked, it is not against the law for me to sleep in my vehicle in Gainesville. This may seem ordinary if you’ve never tried living the way I do, but most clement places enact measures to keep “undesirables” under control. Every major city in California now has anti-homelessness laws on the books that were written to protect the people who do not like to see homeless people in public (rather than being written to protect the actual homeless people, themselves.)

If I wintered in California, I would regularly be at risk of having my van impounded as punishment for living in it.  I know, I know. It makes no sense to fight homelessness by taking away someone’s shelter. But it’s a real risk in many places. As for Texas, I have been hassled by the police after spending 18 hours at a designated campground.  I’ve never been bothered here in Gainesville for openly living my mobile lifestyle.

Gainesville is also a safe place to transition my gender expression. The mayor of Gainesville, Lauren Poe, recently wrote on Facebook: “If you are trans and feeling under threat, come to Gainesville. We respect you, love you and if need-be, we will protect you.” In a nation that seems obsessed with which bathroom I use, it is a great comfort to spend my winters in a city that added “gender identity” to their anti-discrimination laws in 2008.  Gainesville is a safe place and I can feel my spirit grow when I spend time here.

This winter, I read (in audiobook format) Andrew Chaiken’s epic 1994 book about the Apollo missions, A Man on the Moon, as I drove around Gainesville’s streets filled with murals and quirky folk art. When Mr. Kitty and I take a night trip down 8th avenue, through the Solar Walk, I like to imagine that we are traveling through space in our Escape Pod.  The sculpted concrete stars and planets on the sidewalk beside us are heavy echoes of the originals, gleaming high above. We are surrounded by stars.

It was on one of those night runs down the Solar Corridor that I realized my current life motto: What would an astronaut do?

I have been on a quest the last several years to improve my emotional self-regulation. I have progressed tremendously as anyone close to me will readily attest. What would an astronaut do? An astronaut would remain calm, particularly in a crisis.  An astronaut would not give up when faced with a problem, but rather think things through, logically and carefully, finding tools in his environment to achieve his goals.

The Apollo 13 mission nearly ended in as much tragedy as the Apollo 1 mission.  A cabin fire in Apollo 1 killed all three astronauts — Grissom, White, and Chafee — on the launch pad in 1967.  For a time, it appeared that the pilots of Apollo 13 — Lovell, Swigert, and Haise — would suffer a similar fate after an oxygen tank exploded, two days out from Earth, damaging the Service Module, thus also rendering the Command Module useless.  The interior of their spacecraft began losing life-sustaining heat quickly, water was in short supply, and the astronauts were at risk of asphyxiation from their own exhaled carbon dioxide.

What would an astronaut do? Get on the radio and calmly announce, “Houston, we have a problem here.”  Troubleshoot the problem along with help from Houston.  And build a carbon-dioxide scrubber out of a flight manual cover, parts from their space suits, and a pair of socks.

I have been working to incorporate the lessons of the Apollo astronauts into my daily life:

Stay calm.

Maintain logic and problem-solving skills such as flexible thinking and improvisation.

Focus on the mission.

I’ve particularly been spending a lot of time thinking about what it means to focus on the mission.

Focusing on the mission means that the activism and advocacy work we Autistic adults and non-autistic parents of Autistics are doing is more important than interpersonal squabbles.  Sometimes we have goals so incompatible that we cannot work together, but whenever I am seeking the same goal as someone else, it is important for me to promote their work, no matter whether we get along as individuals. Focusing on the mission means trying to get along with everyone, but also staying socially detached enough to avoid allowing my feelings about a person affect my respect for their work.

I was writing something the other day, in which I mentioned “my mission.”  I have been thinking about my mission for a long time and, more and more, I have been wanting an actual mission statement. I talk about being on a mission, but I don’t always communicate that mission in specific, clear terms.

So I would like to take this opportunity to share my mission statement:

-=+*+=-

Pre-amble:

All people have inherent worth; human life cannot be valued in the coin of productivity. What makes people matter is that they exist.

There are no “special needs.”  All humans have needs and by calling some needs “normal” or “ordinary” and other needs “special,” we set one group of people aside as potential “burdens” who should be grateful for the “special treatment” they get.

Access is crucial for full participation in society.  The principle of universal design must be extended to all, making all public access accessible to people regardless of mobility, neurotype, physical appearance including race and size, gender, communication style, support needs, and more.

Respect autonomy and presume competence. The children of today must not be forced to suffer tomorrow the things we endured yesterday.

I yearn to hand an oxygen mask of survival and a flotation device of self-worth to every human being.  I can only achieve this work if I keep one oxygen mask and one flotation device for myself.

Mission:

My mission is to work every day to maintain my own survival so that I can help others maintain theirs. My mission is to add more love to and remove more stigma and misunderstanding from the world. My mission is to join every day in the effort to shift society’s views to a more compassionate, understanding, accepting position from which diversity can truly be celebrated rather than feared.

-=+*+=-

This is my mission and every time I ask myself,  “what would an astronaut do?” and the answer is “focus on the mission,” this is the mission.  This is what I am striving to draw more of into my life and, through me, into the world: more love, more understanding, more thriving.

And now I must carry on with the mission. Do carry on with yours and insofar as our missions intersect, may we always merge our efforts and achieve greater success than we each could have grasped alone.

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.

 

I Don’t Have Privilege, Do I?

lens flare

[image description: lens flare from the sun. In the upper right corner, the sun blazes brightly, sending penetrating rays down into the forest and culminating in a green arc at the lower left. Perhaps it could be taken as a visual symbol of the penetrating light of wisdom? Taken November 19, 2016, in the Devil’s Millhopper Sinkhole, Gainesville, Florida. Copyright Sparrow R. Jones]


Privilege. I’ve seen so many arguments crop up when people start talking about privilege. I understand where people are coming from: if you’re white and impoverished, you probably don’t feel very privileged, right? You probably think something like, “oh, right. This white skin sure hasn’t done much for me. I’m living in a run-down trailer while Kanye West has millions of dollars. Don’t tell me about privilege!”

I’ve seen that argument, or some variation on it, so many times over the years. The argument is incorrect because it comes from not understanding what is meant when someone talks about “white privilege” or just “privilege.”

For starters, the word “privilege” means an advantage and most people don’t feel like they have much advantage in life. “Membership has its privileges” “he’s a privileged character.” People think of the word “privilege” as something that means you were ‘born with a silver spoon in your mouth.’

Yes, that is one definition of privilege, but when the word is being used to talk about social issues, it just means a specific edge, often (but not always) brought about through society’s stigmatized view of different types of people. If you don’t belong to one of the groups of people who are especially looked down on, hated, and/or feared you have privilege…at least in that area of your life.

It doesn’t have to be a huge edge. Privilege is not an absolute and it is not like an on/off switch where you’re either a millionaire or a skid-row bum.

But there’s something even more important than the amount of any specific type of privilege you have: the interaction between different amounts of privilege or lack of privilege in your life. Let me talk about something that might (or might not) be a new word for you: intersectionality.

Yes, it’s one of those academic words. But I’m going to break it down now and hopefully it will help you understand how you can be down on your luck or even at the bottom-of-the-barrel and still have some kinds of privilege.

Every single one of us is the result of intersections (combinations/interactions) of many different personal identities.  For example, here are some of my identities:

  1. white
  2. female at birth
  3. transgender/transmasculine
  4. alternate sexuality (very complicated to explain. Let’s just call it grey asexual for now.)
  5. Autistic
  6. multiply physically disabled
  7. not mobility impaired/not a wheelchair user
  8. multiply neurodivergent/neurologically disabled (N24 in addition to autism)
  9. psychologically disabled (C-PTSD, Anxiety, Depression)
  10. middle-class upbringing (college-educated parents, good childhood nutrition, etc.)
  11. highly educated (both self-educated and at university)
  12. poor/homeless
  13. middle-aged

Each of those identities has a different amount of privilege or lack of privilege.

Let me draw you a picture of my own intersectionality. I have way too many identities to put them all in one diagram, so I’m just going to talk about four of them in this diagram:

privilege diagram

[image description: a drawing of four circles that overlap. On the edges, each of those four circles is labeled: ‘WHITE’, ‘AUTISTIC’, ‘HOMELESS’, ‘EDUCATED’. In the center, where all four identity circles overlap, is the word ‘SPARROW’.]

This diagram illustrates four of those identities I listed above: white, Autistic, homeless, and educated. I put my name in the center where all the circles overlap, to show that I am a combination of those identities. If you take one of them away, I’m no longer the Sparrow you see before you today.

When you look at my privilege this way, you can see that my white privilege is not the whole story. Way out there on the edge where I am nothing but a white person, there is a lot of privilege. The place where the race circle overlaps with the circle indicating that I’m highly educated is a space with a huge amount of privilege.

My education represents multiple layers of privilege, starting with my birth into a middle-class family with two parents who had been to college. I grew up learning things from my parents because they are also highly educated. Growing up in that family also meant I got good nutrition in childhood to help my body grow strong. I got to travel on vacations and have broadening experiences in places other than the neighborhood and community where I grew up. I lived in safe neighborhoods with good schools. I was able to go to university and earn degrees because of many intersecting (there’s that word again) privileges that go all the way back to my childhood. The good nutrition and intellectual stimulation as a child helped my brain to grow in ways that made it easier for me to educate myself. There’s a massive amount of privilege contained in the intersection of those two identities: white and educated.

But what about those other two circles? I am poor and homeless and that often makes me life very difficult. This week I have been going around to places like the Salvation Army, trying to find enough food to keep myself alive until I can either get paid for some of my writing or my next disability check comes in — and I am currently very worried about my disability income because I’m up for re-certification and I filled out the paperwork today and it doesn’t look good. If I lose my SSI disability, I have no idea how I will be able to hold my life together at all. That’s not privilege, right? My homelessness and poverty are the opposite of privilege. A lot of my humanity doesn’t matter to a lot of people in this world if I can’t pay bills or afford the basics of life.

And I am Autistic, as you likely know since this is a blog where I focus on Autistic issues and talk about my lived experience of autism. There is a lot of stigma connected to being known to be Autistic. A lot of people refuse to listen to anything I have to say. A lot of people value what non-autistic people say about autism much more highly than what those of us who live Autistic have to say about it, even when we’re saying the same thing. Most especially when our lived experience is not what the non-autistic experts say it is.

When you look at the space where Autistic and homeless overlap, you realize there is a huge lack of privilege there. Often I need things because I’m homeless that I can’t get because I’m Autistic. Or I need things because I’m Autistic that I can’t get because I’m homeless. My medical care is deeply substandard because of this intersection of lack of privilege. I have a lot of struggles with trying to build a career (ironically, since I chose to become homeless because it was the only way someone at my extremely low income-level could do the work I now do.)

But here’s the thing about intersectionality: that intersection of poverty and homelessness and being Autistic does not erase that intersection of being white and highly educated. I am still privileged at the same time that I am not privileged. I know, right? It can get confusing. But the thing about intersectionality is that I am not just one or two of those intersections of identity but I am all the intersections. When I am struggling to get my healthcare needs met because I am Autistic and homeless, I have an advantage over many other homeless Autistics because I am also white and highly educated. So there are doors that I can open with my privilege even though I am also a marginalized person.

Last summer, I was camping at a free equestrian camp in northern Missouri. There are a ton of those free camps scattered all across the northern part of the state…so many, in fact, that I counted and saw that a person could live for a full year for free, moving from horse camp to horse camp and staying a week at each one, without ever staying at the same camp twice. They are fairly primitive camping spots because they’re mostly there so that people with horses have someplace to go ride them.

My campsite on that particular evening had a fire ring and a picnic table, plus the site had a dumpster and a vault toilet (a big outhouse, basically.) There was no running water, no electricity…and no people. I had a great time there because I was alone for most of that week. Someone parked near me for a few hours to take their horse out of a trailer and ride him around and then left. I really enjoyed the solitude.

One night, a police officer pulled up to my campsite. He asked me if I had heard gunshots. I answered honestly that I had not, and that I had been in my van for the last hour, so I wouldn’t have heard them anyway. I have no idea if there were really gunshots or if that was just his way of opening a conversation with me. He asked me what I was doing and he was pretty friendly about it. I told him the truth: I was on my way to spend the Fourth of July holiday with family but, “you know how it is: I don’t want to show up so early that they’re tired of me before the holiday even starts! So I figured I’d spend a little time camping. Really nice campsite you’ve got here!”

He laughed with me about the idea of imposing one’s self on family too long and agreed that Missouri sure was pretty. Satisfied that I hadn’t decided to permanently move in and that I seemed to be just an innocent traveler, and not up to no good, he wished me a good evening and left.

After the officer left, I wondered how that encounter would have gone if I were Black. Would he have been so quick with the friendly banter? Would he have been so quick to decide it was okay for me to camp there? What if I were  not from a highly educated middle-class family? The words that come out of my mouth tell people that I come from a particular background and many people respect me when I am speaking well. What if my stress levels and anxiety  had been so high that my Autistic tendency to lose speech in difficult times had kicked in and I wasn’t able to speak smoothly with him? What if I had been in one of my moments where I can’t speak at all and had to type my half of the conversation to him on my AAC device?

This is intersectionality of privilege: the way I was treated by that police officer showed me that he was seeing my privilege and feeling comfortable about me because of it. I could easily have been in a situation where he mainly saw my lack of privilege and felt concerned about my presence at the campsite, wanting to chase me out of his county or put me in his jail or take me to a mental hospital. And if I had been a different person — perhaps one who had a harder time hiding my lack of privilege…say because it was predicated on my dark skin color that I could not hide from him no matter what … it is anyone’s guess how that interaction would have gone.

This is why we talk so much about white privilege when we discuss privilege, even though there are so many different kinds of privilege. Being Black is something a person can’t turn on and off, can’t disguise, can’t just keep their mouth shut about, can’t see a voice coach to learn how to obscure it. Black is Black, no matter what. And that’s a great thing, and something to be pleased and proud of…but it’s also a facet of a person’s identity that means they have to be careful with every single life choice.

Being Black is a facet of a person’s identity that means they live with a target on their back every day, every moment. The wrong word, the wrong movement, going to the wrong place, wearing the wrong clothes, walking home the wrong way on a dark rainy night with your hood up to keep the rain off your head … every single thing that Black people do or say can put them at risk because Blackness is the first thing that people see about them and people make judgments and decisions based on that.

And that is why white privilege is such a huge thing, even for someone like me who is poor, hungry, homeless, multiply disabled, struggling to get by with anxiety and PTSD and a history of abuse and institutionalization. The cards are stacked against me…but my skin is white and my words, when they are working for me, instantly reveal my level of education and privilege and that has kept me alive against the odds for fifty years.

The next time you see someone talking about privilege and you feel angry or ashamed and want to reject the idea that you have privilege? Don’t. Accept that you have privilege. Admit it. Own it. Privilege is not something to be ashamed of. Most of us didn’t even ask for the privileges we have; we were just born that way or born into an environment that was aimed toward shaping us that way. “Check your privilege” doesn’t mean to be ashamed of what you have or of the advantages it gives you.

Being asked to check your privilege just means that you should stop to think about the things that seem easy for you and remember that they are not easy for everyone. You may make phone calls with barely any effort, but it can be hell for me and impossible for someone else. I can drive really well: I’ve driven 31,000 miles in the last 18 months and have only put a few light scuffs on the car in the process (that one-lane tunnel in Indiana was way too narrow, I swear to you!) Not everyone can drive so well or even at all. I’d go so far as to say that at least half of my friends cannot drive at all. Maybe even more than half of them. I am not ashamed that I can drive, but it is important that I check my privilege and remember that it’s not something everyone can do (and there’s no shame in not being able to drive, either!)

If you feel like people want you to feel guilty for being white, stop and ask yourself if you are projecting your own feelings onto them. I have been told to check my white privilege a lot of times and I have never felt like someone wanted me to be ashamed of being white (or of having any sort of privilege). Being ashamed of being white (or privileged in any other way) accomplishes nothing! If you are having a hard time getting past that feeling, though, it can be very therapeutic to use your privilege to help break down the barriers that other people face. Here are some suggestions of ways to use your privilege for the benefit of marginalized people:

Seven ways to use your cisgender privilege (the privilege of being born the sex/gender you identify as being) to help transgender people.

Four ways to “push back” against your privilege (of any type) and help marginalized people.

What to do instead of just feeling guilty about it once you realize you have privilege in some area of your life.

Five ways to use your privilege to fight anti-Black racism.

And, just for good measure, a white cis man explains why wearing a safety pin is not enough.

So don’t resent it when someone lets you know about your privilege. They are helping you to understand yourself better. You are not supposed to feel ashamed. Someone said, “people tell me to check my privilege to get me to shut up” and that’s kind of true. Because as some of those links I just gave you will remind you, when someone reminds you of your privilege that’s the time to stop talking, start listening, and learn about the realities of someone else’s life.

I have learned so much when I have listened to my Black friends, my Latinx friends, friends who are trans women, friends with psychiatric disabilities I don’t have, friends with other disabilities I don’t live with, immigrant friends, friends much older or much younger than me. I have learned so much when I let people tell me about the marginalized aspects of their lives.

When someone helps me check my privilege, they are doing me a favor. It might sting in the short term, but I benefit so much in the long run. We all benefit from understanding the realities of the lives of people who are not the same as us. And we all benefit from increasing access for everyone and working to build a world that is more understanding, more fair, has more opportunities and less stigma and bigotry.

Do you have privilege? Probably, yes. Most people have some amount of privilege and some amount of lack of privilege. It’s not a contest and it’s not a zero sum game. Don’t get caught up in trying to calculate how much privilege you do or don’t have. Accept that you have some privilege and do what you can to help marginalized people (including yourself, if you are marginalized in aspects of your life) get heard and respected.

We are stronger together, all of us. Check your privilege and then use that privilege as a force for good in the world.

Why I Call Myself Autistic

Tree at the Antietam Graveyard

image description: a tall, bright tree at a family graveyard on the Antietam Battlefield. The photograph has been put through post-processing to frame the tree in light while darkening the borders of the picture. Photograph copyright 2016, Sparrow Rose Jones

A reader named Karin posted a lengthy comment on my blog post from two days ago and I felt that all the time and effort that went into it deserved a full blog response. You can read Karin’s full comment under the blog essay What Is a Disorder?

Those of you who have read my latest book, The ABCs of Autism Acceptance, will recognize that I’ve covered this ground already, in my chapter “I is for Identity-First Language,”

 

Thank you, Karin, for your thoughtful and courteous comment. I also have anxiety, C-PTSD, and depression. These acquired neurodivergences are not, in my case, traits I was born with but neurological responses to abuse and ableism, both of which I’ve been handed heaping helpings of throughout my life. I am sorry to hear that you struggle with these very challenging neurodivergences as well.

 

I would tend to agree that using or preferring person-first language doesn’t necessarily mean a person views the trait being described as a bad trait, but most often it does and I see indications from your words that you do feel that person-first language is necessary to try to linguistically separate a person from an undesirable trait. Specifically, your response to the choice so many of us have made to refer to ourselves as Autistic shows that you feel autism is a highly undesirable trait that should be held as far away from a person as possible. I will explain further shortly; I am addressing your points in the same order that you made them.

 

You write, “I want others to see me as a whole person. My disability is PART of me, yes, and it affects many choices I make…but I also have personality traits and interests that have nothing to do with my disability.”

 

This is where Autism (and many other neurodivergences) are not like many other disabilities.

 

As an Autistic, I am a whole person. “Autistic” is a label of identification that contains full personhood within it, much as many other labels of identification. If I called someone a “woman” or a “Muslim” or “Black,” would you feel that it was important for them to use person-first language because someone might mistakenly forget that they are a whole person? Instead, perhaps, I should call them a “person with femaleness” or “a person who follows Islam” or …. I’m having a hard time with this last one, because every person-first construction I can think of feels so wrong. “A person with Blackness” is about the best I can come up with. My apologies.

 

These constructions feel awkward and wrong and sometimes even a bit insulting because….well, because they are. I am trying to separate out someone’s gender, religion, or racial identity from their personhood. I am suggesting that these core traits of personal identity somehow obscure the fact that women, Muslims, and Blacks are whole people. Ridiculous, right?

 

But people seem to feel so differently about Autistics. Is it because we’re disabled? I don’t think so. Do people question whether a wheelchair user is a whole person? I’m sure some ignorant people do, but most people don’t — as evidenced by the linguistic construction: a wheelchair user, not a person with a wheelchair (although I have seen “a person who uses a wheelchair” but not exclusively.) The same goes for someone who’s Blind or Deaf. We don’t tend to talk about a person with blindness or a person with deafness.

 

It is because Autism is a developmental disability and sometimes an intellectual disability. This is where I see people insisting most fiercely that person-first language is important to remind others that they are talking about a whole person. We have a cultural prejudice against those of us with neurological disabilities. Because the brain is the seat of pretty much everything — our senses, our movement, our thoughts, our memories, our drives, our communication — people take an extremely ableist view that a brain that is not like theirs might be the seat of someone who is not fully human.

 

That’s so important, I want to say it again in its own paragraph: people get so insistent about using person-first language to “remind” the world that Autistic people are whole people because they don’t fully believe it themselves.

 

Why would anyone need to be reminded of our personhood? Because people don’t really believe we have personhood. No one needs to insist that you remember that women are people. It’s self-evident that women are people, right? (Okay, maybe not always. But among reasonable people, yes, it’s self-evident.) Person-first language is a perfect example of Gertrude’s exclamation in Hamlet: “The lady doth protest too much, methinks.”

 

Another thing that’s different about autism, compared to many other disabilities: you talk about having personality traits and interests that have nothing to do with your disability. My disability is that I have a type of brain that is in the minority and I live in a society that looks down on those of us who are in a neurominority. So everything I do and love and think and feel gets pathologized as a “symptom” of a “disorder”  because it all comes from my beautiful but misunderstood brain.

 

You see, I actually am my brain and I am autism and all my personality traits and interests come from my Autistic brain and that’s why I refer to myself as Autistic rather than trying to create some kind of artificial separation between myself and …. Myself. It makes no sense to try to separate myself from autism because I am my brain and my brain is Autistic. And my brain is beautiful and wonderful and not something I want to try to disown by using person-first language to try to create some kind of pretense that my self is not my self due to shame about my self or a false belief that being my self makes me less than a whole person.

 

Rather than using unnatural language to try to convince others that I am a whole person (and I don’t know how I could convince someone I am a whole person by using the language of shame and lack of personhood) I prefer to do the work I’m doing right this minute: the work of explaining to people that their belief that Autistics are not whole people is illogical and bigoted and needs to stop. We should not have to hold ourselves out away from ourselves as if our identity were soiled underwear in order to be recognized as the whole people we are. It is an oppression to insist that we will only be viewed as whole people by disowning our own brains.

 

So it is a very different thing for someone with a “physical disability” (I think that’s a false dichotomy, but that’s another essay for another day) to use  person-first language, because a diabetic *can* be considered separately from their diabetes or a person with Ehrler-Danlos Syndrome (a connective tissue disorder I have) is a person completely independently of what their tendons and ligaments are doing. But my disability is one of cognition, perception, communication — it’s my brain that is different from the mainstream and my brain is me and using person-first language to try to distance me from my brain is actually denying my personhood rather than affirming it.

 

Karin writes, “I do have a question about the language I see many autistic people including yourself often using – “Autistics.” I understand calling yourselves A/autistic people, but not autistics. To me as a reader it sounds dehumanizing and distancing. Can you explain this so I can understand? I just cannot imagine ever calling myself a disabled, a cerebral palsied or other people with my condition cerebral palsies. I understand the concept of identity first in general, but why remove the person part?”

 

If it sounds dehumanizing and distancing, it is because you have internalized the ableism I was just speaking of — the idea that being Autistic is being lesser in some way, particularly in the area of being human. It is intriguing to me that you call identity-first language “distancing” when it is person-first language that strives to distance me from my own brain.

 

If you feel that calling myself Autistic has “removed the person part” you are admitting that you feel Autistics are not whole humans and require additional linguistic humanity to be added. By referring to myself by my neurotype, I am saying, “I am this type of human” just like a person referring to themselves by their gender says “I am this type of human.” No one suggests that identifying as “man” or “woman” has removed the person part because no one feels it needs to be added in the first place. Believing that Autistics need to have person added to our identity reveals an underlying belief that it isn’t already there, rolled into the definition the way it is for men, women, and all gender identities.

 

Karin writes (in reference to depression, anxiety, PTSD, etc.): “We need treatments. Cures. Adequate healthcare coverage for intensive therapy when needed, better medications that don’t have bad side effects or cost a fortune. I don’t think it is wrong to pursue treatments or cures for conditions while also saying “I am a valuable person as I am and deserve respect and opportunities, not stigma.””

 

I am not against taking medication for depression or anxiety or PTSD I am not against therapies. What I am against is people being defined as “mentally ill” against their will and forced to take medications. I can’t take medication for depression because the medication makes me very sick. I have required hospitalization for the effects of anti-depressants. I don’t think it’s wrong to pursue treatments for depression so long as it is up to the person to choose whether to take mind-altering drugs or not.

 

But I am very much against seeking a cure for autism. My brain has 100 billion neurons and there is no way to re-wire them and make me not-autistic. There is no way to cure autism in a living person. Autism is a type of brain and you cannot change my brain.

 

The only way to “cure” autism is to prevent it from happening and that’s exactly what is happening with genome projects like MSSNG. The aim is to determine autistic genetics so that pre-natal testing can determine which babies are developing autistic brains so that their mothers can be counseled to abort them. This is not science fiction. This is exactly what has happened with Down Syndrome. Pre-natal testing for Down Syndrome results in pressure to abort when the test comes up positive. Attempts to “cure” autism are thinly-veiled attempts to create a world where people like me are no longer born in the first place.

 

Think for a moment how that makes us Autistics feel, watching everyone hustle to funnel millions and millions of dollars into building a world without people like us while the vast majority of us are so under served that we die from preventable diseases and live in abusive situations, sub-standard housing, homeless, or in prison because no one had any better idea of where to warehouse us.

 

A “cure” for autism is not like a cure for Ehrlers-Danlos Syndrome. I would think it was grand if some gene therapy could cure my connective tissue disorder. I live with a lot of pain every day. My connective tissue is not “me.” I don’t think with it. I don’t dream with it. It is strictly for maintaining this physical body and moving it around, much like you describe when you write: “The majority of problems cerebral palsy causes for me can be alleviated by better wheelchair accessibility, improved home care services, and the ending of assumptions and bias against people with physical conditions.” That is how I feel about my EDS. It is not at all how I feel about being Autistic. My EDS is painful and impacts my mobility, but Autistic is who I am, to the very core.

 

Karin writes, “To be clear, I’m not championing research to cure autism, and especially not if it would involve abortion or any coercive treatment. I think we would lose something as a society/world without autistic people in it. But I also can understand that there are some autistic people who would want certain treatments, like perhaps something to make sensory stimuli less overwhelming.” and “I think it’s important that we don’t assume that just because we don’t want something, that doesn’t mean others won’t want it either.”

 

I have devices to make sensory stimuli less overwhelming. I am not against treatments.

 

But I am strongly against millions and millions of dollars being poured into a “cure”.

 

Helping me to navigate the world with less pain and more understanding is called accommodation and I am a strong supporter of accommodation. I support everything that makes life easier for Autistics. The problem is that “cure” and “treatment” are synonymous with things that make life harder for Autistics or erase us from the world completely.

 

I will never support “cure” because that can only be accomplished through genocide.

 

I am cautious in my support of “treatment”  because that word is used to describe so many tortures and torments that cause the depression, anxiety, and PTSD so many of us Autistic people live with.

 

It is our existence and core identity that are under attack and so long as this war against Autistics continues, I will boldly and proudly continue to identify as Autistic. I refuse to linguistically set my being off to one side so that I can present a socially-acceptable ghost of who I am to a society that will never fully  accept my personhood so long as I am working to hide my whole, natural humanity, no matter how many times I toss the word “person” at them.

 

I choose to live with integrity and authenticity, claiming my beautiful brain as my own. I am Autistic and I am proud of who I am.

What Is a Disorder?

Smilodon Fatalis

Smilodon fatalis, the sabre-toothed cat. The name means “fatal knife-tooth” and this was the most exciting creature I’d spotted on my travels since the Borophagus hilli,  “Bone-crushing Dog” I saw at the Hagerman Fossil Beds in Idaho last  year. I discovered this graceful yet skeletal creature at the I-79 Southbound West Virginia welcome center. Photograph copyright 2016, Sparrow Rose Jones.

Yesterday, I posted an essay about Autism Speak’s new mission statement, and in that essay I wrote: “We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us.”

A reader commented:

Great article overall, but I’m a bit confused as to your meaning of ‘we are not disordered.’ As a person who does have multiple disorders aside from being autistic, I’m worried about what this implies when it comes to people with mental illness and other neurodiversities beyond autism; that maybe it is a ‘throwing one group under the bus to support another’ thing. I can’t imagine you meant that on purpose, and it certainly could be me misconstruing the meaning (it may have just meant to remember we are people before we are ‘disordered’) but I thought I’d point it out in case it was confusing to anyone else as well.

You are correct, dear reader, I did not intend to throw anyone under the bus. And I did not throw anyone under the bus, intentionally or accidentally. Since you are confused, I decided to make a fresh blog post so I can explain my perspective more thoroughly.

Before I start in to topics like “what is a disorder” and “why do I say that autism is not a disorder” and “mental illness” — because that’s a lot of ground to cover — let me make one quick side note first:

The Language of the Neurodiversity Paradigm

There is no such thing as “neurodiversities”  unless you are speaking in the same sense as modern physicists when they talk about “universes.” Neurodiversity is, to quote Nick Walker’s excellent and foundational essay: “the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species.” You can see why the plural form, “neurodiversities” doesn’t make sense….unless one is speaking of neurodiversity among multiple species or among multiple peoples, such as humans on Earth and denizens of some as-yet undiscovered planet with which we might establish communication in the future.

I think what you meant was “neurodivergences.” I apologize if I appear to be nitpicking your word choice, but the language of the neurodiversity paradigm and of the neurodiversity movement (two different things – see Nick Walker’s essay. It’s a must-read, really) are still new enough and the topic is important enough that we must all work hard to use this language accurately while these ideas are still taking shape in society’s general consciousness. The linguistic work we do today will save us so much difficulty and miscommunication in years to come. I am multiply neurodivergent and the accurate use of this language is very important to me because it provides such clarity in communicating my lived experience.

Now, on to the actual point of this essay.

What is a Disorder?

I can’t say enough good about Nick Walker’s work and if you have a couple of hours to watch his presentation from February 23, 2015 at CIIS, you should watch this video. I definitely recommend it, both for understanding why I say autism is not a disorder and for exposing yourself to Nick Walker’s brilliance.

For those who don’t have time or data to watch the video, here is my summary of Nick’s points that pertain to what I am discussing in this essay (there is so much more in his presentation than this. I love Nick Walker’s work so much. Every time I take the time to listen to or read Nick’s words, my entire world gets bigger.  Nick Walker is like human LSD: he expands my consciousness every time I take a dose of him.)

The following paragraphs are in italics because they are my paraphrasing (and sometimes direct quotation) of what Nick Walker says in the above presentation.

Diversity is creative potential. Exciting new things are introduced to society by people whose minds work differently from the minds of those in the culture around them. All forms of diversity are subject to society’s power dynamics, which means that those whose minds are neurodivergent — whose minds work in ways that are noticeably different from the neuromajority — are pathologized and called disordered or ill. It’s just another social power dynamic and an oppression of a minority’s civil rights, just like what we’ve seen before around gender, sexual orientation, ethnicity, culture, etc. The dynamics work the same way.

Books like the DSM tell us that autism and other neurodivergences are disorders, but it’s important to remember that science has been used for a long time to justify the oppression of those who diverge in ways that society does not approve of. The oppression of neurominorities that comes from using science to describe us as “disordered” is the same pattern we have already seen so many times in the past in other groups who have struggled to assert their civil rights against a society that chooses to pathologize their existence.

Pathologization of “disorders” leads to a social urge to normalize those who have been considered “ill” or “diseased” because their brains work in ways that differ from the “straight and narrow” neurotype that society has chosen to label as “healthy” only because it is way that the majority of people’s  brains work. The phrase “mental illness” is false and a scam. When these neurodivergences are labeled as illnesses, people are convinced that the way their brain naturally works is a disease. I’m not dogmatically anti-medication, but I’m anti-bullshit and I think the term “mental illness” is bullshit. 

There are government labs where vials are stored. These vials have anthrax, small pox, measles, and other illnesses. You cannot have a “vial of bipolar” or a “vial of autism.” These do not exist outside the bodies and minds of the people who embody them. It’s us, not illness. When I say that “mental illness” is bullshit, I’m not saying nobody should ever take medication. If you are severely depressed and there is a drug that works for you and you want to take it? Go ahead. You should not have to call yourself “ill” in order to get the mind-altering drugs you want.  I don’t think people should be involuntarily medicated, ever. But I’m all for consensual medication of anyone who wants it.

There’s a whole industry around selling these things as diseases and we live in a society that is increasingly hostile to carving out niches for people who function on different rhythms. When you honor your body and brain, Bipolar no longer feels like an illness. You’re surfing your neurology. How do you find the safe spaces to shape your life? If no one does it, it stays unsafe for people to do. The more people out there doing weird stuff with their brains and self, the more acceptable it becomes. We have an obligation to be really weird to make space for other people.

So there’s the background to my answer: what is a disorder? A disorder is an illness. I have some disorders – a connective tissue disorder that can be very painful, for example. But autism is not a disorder. Bipolar is not a disorder. Schizophrenia is not a disorder. There is no such thing as a mental illness because our mentation is our self and we are not ill. We are divergent members of a neurodiverse population that needs the full span of neurodiversity to fuel creativity, innovation, and the full expression of humanity.

Am I Throwing Anyone Under a Bus When I Say That Autism Is Not a Disorder?

I most definitely am not. I am not saying , “autism is not a disorder, but some other mental stuff is.”  I’m saying exactly what I said in yesterday’s essay: “We are different and disabled but not disordered and we do not need you to accept a disorder; we need you to accept us.” I’m not saying other people are disordered; I’m saying Autistics are not. I’m not speaking for other people at all — it’s not my place to speak for other people … although I don’t believe in the construct of “mental illness”  so if anyone is calling someone else disordered, it’s not me. I didn’t think I needed to make that explicit, but here it is explicitly stated now.

Am I Saying We Are People Before We Are Disordered?

No, I don’t engage in person-first language. If someone else wants to use person-first language to describe themselves, I will respect their choice, but I believe in identity-first language because I don’t believe we are disordered at all.  There is no need for person-first language, in my opinion, because person-first language is designed to separate people from things that are deemed shameful or diminishing in some way. Autism is not a disorder, it is not shameful, it is not diminishing. I see no reason to use person-first language. In fact, person-first language inherently implies that there is a disease or disorder present in a person, so I find person-first language offensive when directed at me. As I said, I will respect someone else’s choice to use person-first language to describe themselves because people should have the right to self-identify in any way they choose. But person-first  language is not appropriate for me.

So, no. I am not at all saying that we are people before we are disordered. I am saying we aren’t disordered and it is an oppression to suggest that neurominorities are disordered at all. We are people: Autistic, Bipolar, Multi-dimensional, Kinetic, Schizophrenic, and so on. If you are in one or more of these categories and you have accepted that you are ill, disordered, diseased …. know that you are not required to view yourself that way. You are not required to accept society’s labeling of you based on your divergence from the mainstream type of mind. You are fully permitted to embrace your natural mind, as it is, for the beautiful and creative brain you possess. read more about the Neurodiversity Movement and Mad Pride and rejoice in your uniqueness. Celebrate it. Help to forge new pathways for those who will come after you. The more that we accept and celebrate our uniqueness, the easier and safer it will be for future generations to be authentic to their natural bodies and brains.

I hope that my words are somewhat less confusing now.

 

 

 

 

Is Everyone “a Little Autistic”?

apples

How do you like these apples? Just as apples can be different yet all be apples, people can be different yet all be fully human. You can’t support someone’s differences by pretending they don’t exist.

(Originally posted December 5, 2015)

You’ve heard someone say this before, right? “Oh, well, autism is a spectrum and I think that means that, really, everyone’s a little bit autistic.”

Now, I can see why someone might say that. I said something in my first book, No You Don’t: Essays from an Unstrange Mind, that might seem to support that idea: “And if you aren’t Autistic, don’t be surprised if you recognize pieces of yourself in here, too. Because autism is a difference of intensity and frequency but above all, it is a slice of the human condition. If you are human, you will recognize yourself in some of the things I write.”

This passage does not say that everyone is a little autistic. It says that Autistics are human beings. As my book says a couple of pages later, we are not “a different species, an alien creature, a changeling, a robot, a freak of nature.” We are human beings and so much of what we experience is fundamental to the human condition. Our autistic nervous system affects how we experience our humanity — our experience is often heightened in intensity and colored by our different perspectives on life. But it is humanity we are experiencing because we are fully human.

The converse of “all Autistics are human” — “all humans are Autistics” — is not implied and does not hold. When I say all Autistics are fully human (which, in case you were doubting, we are!) I am in no way implying that all humans are autistic . . . not even a little bit. People see that Autistics are human and that we often experience very intense versions of basic human experiences — anxiety, for example. We often carry a lot of anxiety and we get stressed out and we meltdown from high stress.

Since everyone has felt anxious at some point and everyone has felt overloaded with stress and everyone has “lost their shit” at one point or another, some people get mixed up and decide that sharing such a common experience as a stress and anxiety meltdown means that they are “a little autistic” too. But that is not true and it is a diminishing thing to say, particularly to Autistic people.

If everyone were a little bit autistic, Salvation Army bell ringers would be illegal. If everyone were a little bit autistic, nothing ever would have strobe lights. Ever. Fluorescent lights, sirens, shirt tags, sock seams — these wouldn’t exist. There would be a strong social taboo against dragging a chair across the floor and making that horrible scraping sound with it. Perfume and cologne would be outlawed as hazardous substances and every school and workplace would have a quiet zone for recuperation. How we handled turn-taking would not involve long lines of people standing scrunched up close to each other. In short, if everybody were a little autistic, our whole society would look a great deal different than it does.

Experiencing a taste of what we live with does not make someone autistic, not even a little bit. It would be like me saying that, because I sometimes lose the ability to speak and need to type in order to communicate, I completely understand the lived experience of being an Autistic who never communicates with their voice. I can guess at the experience, but I do not live it. I have intermittent mutism and that does not make me “a little non-speaking” any more than someone who hates standing in lines or even someone who lives with daily anxiety is automatically “a little autistic.” The struggles I face are not the struggles others who have never spoken experience. The struggles non-autistic people face may have some surface similarities to struggles Autistics live with but that does not make someone “a little bit autistic.”

The only way I know to communicate how dismissive it is to say something like “we are all a little autistic” is to shift the whole idea into the context of some other disabilities:

“Sometimes I am looking for something and it’s right in front of me and I just kept missing it even when I was looking right at it. We’re all a little Blind, aren’t we?”

“The other day, I was sitting funny and my foot fell asleep. When I stood up, I almost fell down from the pins and needles. I guess we’re all a little paralyzed, huh?”

Those are ridiculous things to say. But so often I hear people saying analogous things, and not just about autism. How about, “I have to keep my house so clean and everything put away. I am so OCD!” Or “I am completely addicted to Sudoku puzzles!” Have you heard, “I can’t make up my mind. I just keep going back and forth I’m so schizophrenic.” Or, just as bad, the words are applied to something inanimate: “Rain, then sun, then rain, then sun. The weather is so bipolar today!”

Don’t do this! When you use someone else’s disability as an adjective for your quirks or otherwise reduce it to a one-dimensional descriptor, you are making light of their entire life. And when you say everyone is a little bit autistic, you are trivializing what it actually means to be Autistic.

I understand that some people have good intentions. They want to highlight the humanity of Autistics. Be careful — this is how person-first language arose: through an overzealous urge to bludgeon others with a disabled person’s humanity for fear that no one could see it otherwise. Others may be saying they are a little autistic in order to show solidarity with people they view as “fighting the good fight.” I’d like to show solidarity with People of Color but I would never dream of saying we’re all a little bit Asian or everyone is Native American inside or I’m a little Black. So don’t try to appropriate my disability just to show solidarity with me. I will appreciate your support just fine if you just try to pay attention and be sensitive. You can’t support my differences by pretending they don’t exist.

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