A Mind Unstrange

outsider scholar activist

Tag: neurodiversity paradigm

A is for Autism Acceptance

April 5, 2017 /

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?

March 14, 2017 /

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.

Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds

November 10, 2016 /

Sparrow Rose Jones

[image description: Sparrow Rose Jones at the podium. A smiling white transmasculine person with metal-frame glasses, short dark hair, a dark red button-down long-sleeved shirt, jeans, and a black belt with silver buckle. Photo credit: Dr. Evelyn Chiang]

This presentation was delivered at the University of North Carolina’s Fourth Annual Disability is Diversity Week celebration, on Wednesday, November 9th, 2016 in Asheville, North Carolina

content warning: mention of suicide

Thank you for having me here this week to share in your celebration of disability as diversity. I travel all over the country and I have quickly grown to love Asheville and this university for setting such a shining example to the rest of the country when it comes to opportunities for Autistic people and their families.

Let me start by telling you a little bit about myself and why I am talking to you today about neurodiversity, the diversity of human minds, and the crucial role universities play in fostering and supporting diverse minds both in academia and in the world at large. I’m Autistic. In a perfect world, my telling you that would not be much different from my telling you that I’m white, 49 years old, a musician, or a nature-lover. It’s a fact about who I am.

Being Autistic means that my nervous system, including my brain, is wired differently. Some of my senses, like hearing, are tuned so high that the world can be a painful place for me. Other senses, such as my proprioceptive sense — that is, my sense of where my body is located — are tuned so low that I have to move around a lot to feel comfortable. That’s just one small sample of the ways that my body and mind respond to the environment differently. My nervous system has a wide variety of interesting twists and turns and some of those twists can vary from day to day or even moment to moment. Each Autistic person has their own interesting nervous system and that’s why we can be so different from one another in so many ways yet all be Autistic.

As a child, I had a lot of difficulty with school. I wasn’t getting adequate support and so I tended to be disruptive in class, trying to get the sensory input I needed for those senses that were turned on low and trying to escape the sensory inputs that were too intense for me to handle. Any of you who have worked with Autistic children know what kind of challenges I was up against, not to mention the challenge I presented to my teachers. Those were less enlightened times and it can fairly be said that I got an education in spite of school rather than because of it.

Neurodivergent? Some of you will be very familiar with that word while others have never heard the word before and are figuring it out through context. Neurodivergent is just what it sounds like: some people, like me, have minds that diverge from the mainstream. We are neurodivergent. You might have heard the word neurotypical used to describe people who aren’t autistic? Today I want to talk about the importance of supporting neurodivergent students — all those students who are not neurotypical.

Although I am Autistic and autism is the neurodivergence with which I am the most familiar, both because I have lived Autistic for 49 years but also because I have hundreds of friends all over the world who are also Autistic, autism is not the only neurodivergent neurotype.

All these neuro- words! The root of these words is Neurodiversity, the main word in the title of my presentation today — Neurodiversity: Creativity and Innovation Thrive When We Welcome Diverse Minds. I want to unpack that word a little bit because understanding what neurodiversity is (and is not) will help you understand why it is, or should be, such an important part of the university mandate.

There are three different but interconnected things I can mean when I use the word neurodiversity:

First, neurodiversity is simply a biological fact. We all have brains and all our brains have variations. We might use a word like “neurotypical” or talk about “the neuromajority” or even say things about “the average brain” or “a normal brain” but hopefully most of you realize that there is no such thing. Everyone’s brain is different from everyone else’s brain in ways both subtle and significant. Those of us who are identified as neurodivergent have more significant variation from the majority, but all brains differ and thus the word “neurodiversity” is a word that describes every one of us.

This is neurodiversity as a simple, undeniable, scientific fact. All of nature supports diversity and we have noticed that our natural environment thrives best when we work to preserve biodiversity. The world of ideas is not dissimilar from nature and universities have fostered a spirit of fearless inquiry and seek to create a sanctuary for human knowledge and wisdom. More on this notion of intellectual diversity and its intersection with neurological diversity shortly.

A second meaning of the word is found in the phrase “the neurodiversity paradigm.” The neurodiversity paradigm is a philosophical approach to the biological fact of neurodiversity. The neurodiversity paradigm holds that neurodiversity is not only a natural trait of human existence but that this diversity of minds is a valuable attribute of our species. The neurodiversity paradigm maintains that it is wrong to value one type of brain above another because each has its particular benefits and contributions. Just as we would rightfully cringe at the thought of determining which gender, religion (or lack thereof), or ethnicity is the best, the neurodiversity paradigm instructs us to stop playing favorites with brain types and seek instead to foster all that is great about every brain and every human being in whom those brains dwell and for whom those brains and their larger nervous systems serve as the seat of thought, feeling, will, perception, and identity.

A third meaning of the word neurodiversity is political: “the neurodiversity movement.” The neurodiversity movement, which was born in the Autistic community but exists to serve and support all neurologies — particularly those of fellow neurodivergents such as people with ADHD (many of whom have chosen to identify as Kinetics to escape a pathologizing label), dyslexia, anxiety, bipolar, schizophrenia, and more — is a political movement seeking justice and equality for all those “differently-brained” people in every sphere of society, including the university.

So neurodiversity is a biological reality, a philosophy about that reality, and a political movement informed by that philosophy.

Now back to the mandate of the university and why I posit that upholding the neurodiversity paradigm – the philosophy that all brain types are valuable – is, or should be, part of that mandate.

Over 160 years ago, John Henry Newman wrote a book many still value today for the way he explained and defined the concept of a liberal education, “The Idea of a University.” In that book, Newman explains why it is important for a university to offer areas of study that still garner criticism today, such as the humanities.

“it is a great point,” he wrote, “to enlarge the range of studies which a University professes, even for the sake of the students; and, though they cannot pursue every subject which is open to them, they will be the gainers by living among those and under those who represent the whole circle. This I conceive to be the advantage of a seat of universal learning, considered as a place of education. An assemblage of learned men, zealous for their own sciences, and rivals of each other, are brought, by familiar intercourse and for the sake of intellectual peace, to adjust together the claims and relations of their respective subjects of investigation. They learn to respect, to consult, to aid each other. Thus is created a pure and clear atmosphere of thought, which the student also breathes, though in his own case he only pursues a few sciences out of the multitude.”

What Newman is describing could be called academic diversity or intellectual diversity and you will be hard-pressed to find academic faculty who believe a university should narrow its range and exclude wide swaths of intellectual disciplines from the educational menu offered to students and, by extension, to the world at large. At one time or another nearly every discipline universities embrace has been threatened with extinction by legislative budget cuts coming from outsiders unable to recognize the immense value that comes from art history, philosophy, musical performance, political science, theoretical mathematics, foreign languages, even English. Economic pressures and political forces focused more on everyday pragmatism than on the sort of creativity and innovation that fires the human spirit to ever higher achievements seek always to convert universities from temples of knowledge to cookie-cutter vocational pathways.

Universities resist this attempted narrowing of the collective mind every day. Yet what of the narrow range of the types of minds welcome to engage in this Great Conversation of universal learning?

Not only is there a place in academia for a wide range of minds, including those which diverge from the dominant majority of neurotypes, but the university needs neurological diversity in order to thrive and grow.

All great thought and innovation has benefitted from diversity of one form or another. African-American minds brought us the blood bank (Charles Drew), open-heart surgery (Dr. Daniel Hale Williams), an understanding of bioluminescence (Emmett Chapelle), the traffic signal (Garrett Morgan), the gas mask (Garrett Morgan), the synthesis of medicinal drugs from plants (Percy Lavon Julian), not to mention the literature of Maya Angelou, James Baldwin, Octavia Butler, W.E.B. DuBois, Ralph Ellison, Langston Hughes, Malcolm X, and so many more.

We celebrate the accomplishments of so many brilliant minds of people from various sexual and gender minorities such as Alan Turing, John Maynard Keynes, Margaret Mead, Florence Nightingale, Oscar Wilde, Willa Cather, Emily Dickinson, Eleanor Roosevelt, Leonard da Vinci.

Accomplished and brilliant women are far too numerous to name, but a few of my favorites include Emmy Noether, who developed much of the mathematical modelling of Einstein’s theory of relativity, Rosalind Franklin, whose x-ray photograph of DNA revealed its helical structure to Crick and Watson, Jocelyn Bell Burnell, who discovered pulsars, Chien-Shiung Wu, who disproved a law in physics, the law of parity, that had been believed for thirty years prior to her work, Nettie Stevens, who discovered X and Y chromosomes.

I’m sure most of you are familiar with the Autistic agricultural scientist, Temple Grandin, and realize that it was her innovative work that is revolutionizing the cattle slaughter industry, making it simultaneously more efficient and more humane.

There are so many more great neurodivergent thinkers: John Nash won a Nobel prize for his work with game theory. Vernon L. Smith won a nobel prize for his work in experimental economics. Michelle Dawson has conducted great work studying cognition and perception in autism. Charles Dickens wrote classics of literature still lauded over 100 years later. Franz Liszt, Vincent Van Gogh, Scott Joplin, J.D. Salinger, Kurt Godel, Max Weber, Sylvia Plath, William Styron, Georg Cantor, Robert Pirsig, Jean-Jacques Rousseau, Joseph Pulitzer, Charlotte Perkins Gilman

[I apologize for this post ending so abruptly. I think when the spammers came in and added their links to my blog posts they must have truncated this one. If/when I can find my original text, I will fix it and re-add the conclusion here.]

Why I Call Myself Autistic

October 19, 2016 /
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?

October 17, 2016 /
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. But you may need to visit a doctor in case of severe depression who can prescribe effective medications for the treatment. Also, you may need to look for a trustful pharmacy (similar to an online UK Pharmacy) for buying original medicines. Moreover, you may 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.

 

 

 

 

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