People with Mental Illness Deserve to be Alive

Originally published on Medium

XoJane recently published an article about someone with schizoaffective disorder’s death being a blessing. Outrage ensued. The author’s name became anonymous. The editors of xoJane, at least temporarily, locked their Twitter profiles, then released this apology:

Screencap of: “I apologize for an article that was posted here yesterday, entitled “My Former Friend’s Death Was a Blessing.” I deeply regret the hurt that this article has caused and understand that it has perpetuated stigma and diminished the lives of people with mental illness. I am committed to immediately reviewing our vetting process to ensure that this experience has a positive influence on the ways in which we at xoJane present all women going forward. I appreciate all of you who took the time to let us know how you felt about this issue.”

I will not link to the archived version of the article right now. I would like to focus on what happens when you write about these topics like that. When you write that it’s better that people with mental health needs — especially people with particularly shunned diagnoses — die, this is what I know about you: I do not trust you with anyone. And I do not trust anyone who would post such a thing. I do not know the motivation of an editor allowing it to be posted. There are a multitude of reasons people have suggested, most of them related to increasing page hits and profit. A lot of people already think our lives have no value. They will continue to visit the page. Or, people outside the disability rights/mental health communities will not hear about it.

What happens when you write this way is a lot. It first of all tells people with mental illness — and again especially those with more shunned diagnoses — that people think we’re better off dead. It confirms some of our worst fears, our darkest, deepest worries. I do not think there is any data on this, but I suspect this way of writing about us encourages people to kill themselves.

It also presumes to know what the person with mental illness would have wanted. It presumes that we always think of ourselves as shells, better off dead, and that our suffering will always outweigh our right and desire to live. And indeed, some of us do feel that we are suffering a lot, and/or have suicidal ideation. I spent time in a hospital this January to prevent a suicide attempt! But writing that you know they’d be happy with the way they died and that being dead is better for them perpetuates in a very active way negative self-value and more fear and more, “Well, no one will miss me if I die.”

Then, it reinforces the narrative to other people, casual readers, that we are miserable, soulless unpeople. That with how uncomfortable we make people, we ought to be dead. Like I’ve mentioned in other pieces, we are at best inconvenient and uncomfortable to people. People are allowed to be uncomfortable with actions and statements, and assert boundaries — I have said awkward things to people in episodes of my cyclical mental illness and done my share of sometimes screwing up — but to capitalize off it and further the idea that we’re inherently bad and wrong and unpeople is unethical.

On Bernie Sanders' Mental Health Comment at the Democratic Debate

An ugly statement, contextualized by his reliance on blaming mental illness for mass shootings, sprang forth from Bernie Sanders’ mouth at the Democratic Debate on Sunday in Flint, MI – the same place where he also decided to use people with disabilities as props for the Flint water crisis. While he said the following ugly words, I was on stage at a queer open mic yelling into the microphone a poem what it’s like to be autistic and trans and disabled and watch community members die.

"We are, if [I'm] elected president, going to invest a lot of money into mental health," Sanders said. "And when you watch these Republican debates, you know why we need to invest in mental health."

Ow. It was meant as a casual joke. But this is the kind of rhetoric that routinely perpetuates itself into systemic oppression against people with mental illness like myself. It says, “people with mental illness are responsible for oppressive violence. People with mental illness are responsible for racism, xenophobia, classism, homophobia, transphobia, and ableism.” We can certainly be all of the above things because above all we are people, but mental illness alone is not responsible for these things. For Bernie Sanders, who professes to be anti-bigotry and progressive, it is a low blow to ascribe these things to mental illness. It’s a cop-out.

And above all we are people. I raised my voice into the microphone to conclude the poem,

and the sun sinks through the trees while you’re holding
candles and mourning the dead into the morning and beyond into all throughout the year
writing statements and riding waves of emotion that threaten to choke you as surely as
all the murdered disabled and trans people were
and sometimes they’re both and you can’t
draw lines in yourself so you’re drawing lines in the sand and saying “no more”
it’s not knowing where the dread begins and ends in you
it’s not knowing where the dead begin and end in your heart

People with disabilities and mental illness die by a variety of methods every year, many of them murder and suicide. You would rather laugh at jokes made our expense than reform an ableist healthcare system (among other things) and society. No one is saying there’s not a need for better health care, especially for mental health care – but that doesn’t just involve making sure people can adequately access it, but that the healthcare itself isn’t going to compound the issue by treating the person as a problem to be dealt with and being ableist.

And when you talk about mental illness like it’s what’s wrong with the “moral decay” of America… and like it’s what’s wrong with the GOP… you sound like a eugenicist. You sound like the people who, decades and decades ago, held strength and power and influenced state legislation to sterilize us – disabled, mentally ill people (along with people of color and low-income people) – and you sound like the people who committed people with mental illness like me to first “madhouses,” and then later called them “asylums” and then “institutions” and “mental hospitals,” along with people with other disabilities to protect society from us.

You make us out responsible for the nation’s shortcomings, when in reality you have failed to initiate the proper funding and organization of community integration programs for us. You call deinstitutionalization a disaster, and refuse to spend money on community care. You are the reason people think we are horrifyingly dangerous and are more than willing to introduce legislation to strip our rights.

You call us responsible for the things wrong with society and sound like eugenicists.

life lessons from a "difficult child"

In preschool, I ran circles around my classmates.

“Here's the stack of novels she's read today.” The teachers would indicate a large stack of books in kindergarten in first grade to my mother. “Here's the amount of classwork she's done.” A stack of uncompleted worksheets.

I thought the psychiatrist's questions were rather pointless. His condescending manner struck me even as a young child. I couldn't express it in words, so I bit and threw anything I could at him. By the first grade he had given me diagnoses of Oppositional Defiant Disorder, ADHD, and anxiety.

Age 14: I am diagnosed as autistic alongside those.

Age 16: depression.

Throughout: Social skills work. Therapy. Psychiatrists. Medications.

My life has been a cocktail of medications prescribed as diagnoses tacked on each other. My body and brain rejected many of them. Some altered my mood dramatically; others made me fall asleep in class even when I didn't want to. A combination of them gave me seizures in college. I tried to bail from them cold turkey and wound up with withdrawal symptoms for six months. I have no idea what the current ones – a much nicer combination than the last combination – have done to my brain chemistry; I can't function without one of them at this point.

I was gone up the tree when someone stops looking. I was screaming at people who touched me. I was shredding paper and trashing my room and causing a ruckus. I had broken another electronic item; this time, it's by accident, but last time, I threw it.

I never had access to enough language to express my feelings, my past trauma that I didn't know had happened yet, my pent up rage at the turmoil my life constantly seemed to be in. I tried to put words to feelings that I didn't know about, to use words to explain, but it failed. The same words that were my refuge on paper, working on novels and typing out poetry and stories, failed me with trying to express my deepest feelings.

Everything is a pathology, something that needs prescribing for, because we are “too difficult” otherwise. We are to be behaviorally-modified and we are to be silenced one way or another. My life has been through this framework. People wondered how to “fix” me. I was “that kid,” the weird one who moved funny and talked funny and could only talk about cats and gerbils and books, who seemed either lost in their head or too loud and frenetic for this world, who ran off to investigate things without a moment's care of whether I lost track of who I was with.

And yet I was never “from hell.” No one with a disability is from hell, Alison M. Thompson, author of the Boy From Hell: Life With a Child with ADHD. You've gotten that book republished. Congrats, I guess, on implying that we are from an otherworldly dimension of fire and punishment. This is how people see us: punishments, burdens, deadweights.

What about us?

We read your stories and hear your words, no matter how lost in our heads we seem. We are not your experiments in how quiet and orderly you can make us. We live and experience trauma from the way people treat us – we should have your support of all people's to back us up against a world that thinks us a waste of space, not contributing to the pain and trauma. We live your words and your punishments, reared to feel defective and that we'll be only considered almost people if we pass by your standards.

I never learned to shut up and be still. I never learned how to limit the amount of space I take up. I never learned to modulate and self regulate for others' discomfort with my disabilities. I never will. It breaks my heart that people live with the exhaustion of self-regulating into silence or compliance. It breaks my heart that people are learning the ways they supposedly don't matter from the world and all the ways they move and communicate are supposedly wrong.

I work for a world where it is at least mostly safe to be disabled, visibly or not, anywhere, anytime, and no matter who you're with. It is exhausting and painful and sometimes triggering, and sometimes rewarding. I would do it without any of the rewards. It is important enough to me that I lose sleep on how to best benefit the disability community.

Because we are not disposable, or punishments, or wrong for existing. 

--

Note: I used she pronouns as a child

The Spread of Compliance Training

(also published on my Medium account)

Recently, the New York Times put out an article under its health section titled, “Early Behavior Therapy Found to Aid Children with A.D.H.D.” Here is a choice quote from the article:

Behavior modification for A.D.H.D. is based on a fairly simple system of rewards and consequences. Parents reward the good or cooperative acts they see; subtle things, like paying attention for a few moments, can earn a pat on the back or a “good boy.” Completing homework without complaint might earn time on a smartphone. Parents withhold privileges, like playtime or video games, or enforce a “time out” in response to defiance and other misbehavior.

And they learn to ignore irritating but harmless bids to win attention, like making weird noises, tapping or acting like a baby.

                […]

The analysis did not account for the psychological cost to parents — in terms of a child’s tantrums, slammed doors and hurled tableware — of carrying out behavioral techniques.

If this sounds a lot like what is used on autistic children to extinguish stimming and reinforce “positive behaviors” and discourage “negative behaviors…” that’s because it is. What they are discussing is fundamentally Applied Behavioral Analysis (ABA). But wait, you say. Isn’t ABA good for Autistic children? Isn’t it evidence-based?

Yes, ABA is evidence-based in that it does what it’s designed to do – extinguish or replace certain behaviors. But it’s kind of like Jurassic Park, except no one gets eaten by dinosaurs, because people were so intense and focused on what they could do that no one thought – should we do it? B.F. Skinner and Ivar Lovaas would be thrilled that states are mandating private insurers pay for ABA for autistic children.

And that more children are falling under its scope. ADHD is often thought of as a “cousin” to autism by many – and with that comes the pathologization and attempts to erase all unwanted behaviors.

Let’s break this down further:

“And they learn to ignore irritating but harmless bids to win attention, like making weird noises, tapping or acting like a baby.”

I don’t know, I mostly made cat noises because I liked making cat noises. If they are harmless, why must they be extinguished? If they’re harmless, why are they pathologized? Irritating. I forgot that part. They’re “irritating,” and thus are seen as something to eradicate. Couple onto this the fact that most humans engage in “attention-seeking behaviors,” to be seen, to be heard. And adding a third objection to this, the “mental age” trope of “acting like a baby” is never an appropriate way to describe someone with a disability – in fact, I’d go further and object to anyone being told they’re acting like a baby. It is a complete invalidation.

“The analysis did not account for the psychological cost to parents — in terms of a child’s tantrums, slammed doors and hurled tableware — of carrying out behavioral techniques.”

And here we see the age-old “cost to parents” trope. What does it cost parents? What does it do to parents? My questions are: 

·         What does it do to a child to be treated like they are in a dog obedience training course?

·         What does it do to a child to only receive affection conditionally?

·         What does it do to a child to only have access to certain things if they are obedient, quiet, and have perfect behaviors?

·         Will it improve access to actual life skills that aren’t “shut up and stay still” (which are not life skills)?

I’m Autistic too, but I wasn’t diagnosed with that until I was 14. My primary diagnosis until age 14 was ADHD, which I’m still medicated for.  And before you ask – yeah, I was that kid. The one with a behavior chart that my teachers had to sign off on and the other students laughed at because of it. The one who couldn’t sit still in class, and the one who couldn’t pay attention and the one who blurted out things and tapped and meowed at people.

  

In the same way that autistic children are routinely forced to stop flapping, rocking, spinning, and making noise, children with ADHD are now going to go through that as well. Where does it end? It is not okay to do to autistic children, and it is not okay to do to children with ADHD, and it is not okay to do to anyone. And where does it end? With the kids people just think are “annoying” and “loud” but don’t have any sort of diagnosis? It was never okay to do to us, but when and where will you help make it end?

***

Articles on ABA

·         Quiet Hands: https://juststimming.wordpress.com/2011/10/05/quiet-hands/

·         Have Some ABA, or Else: http://autismwomensnetwork.org/have-some-aba-or-else/

·         ABA: https://unstrangemind.wordpress.com/2014/10/07/aba/

·         On Functioning and “Functioning”: http://autisticacademic.com/2015/06/02/on-functioning-and-functioning/

·         Why I Left ABA: https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

·         Why I Oppose ABA as a Method of Instruction: http://realsocialskills.org/post/110819268573/why-i-oppose-aba-as-a-method-of-instruction

·         I’m sorry but that’s not earning your token: http://ink-and-daggers.tumblr.com/post/112076858794/im-sorry-but-thats-not-earning-your-token

·         Tackling That Troublesome Issue of ABA and Ethics: https://emmashopebook.com/2012/10/10/tackling-that-troublesome-issue-of-aba-and-ethics/

·         A further Masterpost of ABA posts: http://neurowonderful.tumblr.com/post/135286731936/2015-autism-aba-resource-masterpost

Autistic and Killed By Police

This post focuses mostly on police reactions 

On February 2, 2012, police shot and killed Stephon Watts, a Chicago-area Black Autistic teenager, for panicking while holding a knife, in his home. On Thursday, February 4, 2016, police entered the apartment of Kayden Clarke, an Autistic trans man in Mesa, Arizona, and shot and killed him for being suicidal and holding a knife. In both cases, the officers knew full well of their Autistic identity, having been called to their homes before.

In Watts’ case, the police had shown up to “subdue” him, according to the news report, many, many times in the past. To have had such encounters with the police, which were undoubtedly physical in nature, would be traumatizing.  Even if Watts had not been panicking in the first place, to lash out from fear of being “subdued” again is the result of a fight or flight response. Undoubtedly, being Black and thus seen as even more intimidating also influenced the officers’ reaction. They shot Stephon Watts for being Autistic, Black, and in extreme distress. As a Black Autistic, Watts faced multiple marginalization from society, with ableism and racism as a reaction that killed him.

In Clarke's case, they had responded to a suicide call, found him holding a knife, and shot an Autistic person they knew was Autistic and in extreme distress. They had responded to a suicide call in the past for Clarke. Clarke, as an Autistic trans man, faced unique societal barriers and also clearly had mental health needs – and the police killed him for it. 

It makes me glad I was able to transport myself to the hospital for my suicidal thoughts in early January. It makes me scared of ever having the thoughts again, not just because it feels awful to have them, but because sometimes the cops kill people who are suicidal. It might be my instinct, too, to grab the nearest object to keep people from touching me or taking me away or whatnot.  

People talk in circles about the need for more training for the police regarding disability and mental health, or of having identification cards people can pull out to show the officers. It is my belief that all the training in the world won’t help what’s ingrained in society; the idea that certain people’s lives are less worth living. For instance, the police in *both* cases knew that Watts and Clarke were Autistic and in extreme distress. I don’t believe training or ID cards will fix the hair-trigger reactions of police. While we don’t know what de-escalation tactics they used, if any, before shooting Watts or Clarke, we know those people are dead because the police shot to kill. Training police could potentially save a few lives, but there have to be better solutions.

On that note, I have no solutions, only exhaustion; I welcome any suggestions other than police training and ID cards on this comment thread.

More posts: 

Stephon Watts: http://www.chicagoreader.com/chicago/stephon-watts-police-shooting-autism-death/Content?oid=20512018

Stephon Watts: http://articles.chicagotribune.com/2012-02-02/news/ct-met-calumet-city-shooting-20120202_1_tasers-kitchen-knife-officers

Kayden Clarke: http://planettransgender.com/trans-man-with-aspergers-shot-dead-by-police-media-misgenders-deadnames/

Kayden Clarke: http://queerbarricades.tumblr.com/post/138759290678/kayden-clarke-ableism-and-transphobia

Kayden Clarke: http://jezebel.com/24-year-old-transgender-man-with-aspergers-killed-by-ar-1757403687?utm_campaign=socialflow_jezebel_facebook&utm_source=jezebel_facebook&utm_medium=socialflow

You Can't Do Disability Rights Without Mental Health Advocacy

Many disabled people's disabilities are mental health needs, or have MH needs comorbidly with their disability. For instance, UNICEF reported that “one chronic physical health condition... significantly increases the likelihood of another physical health condition and mental health conditions.” The lines blur.

I cannot be invisible. I went public about my hospitalization and the fury I felt at Obama and Tim Murphy's scapegoating. It is my hope that there will be one day a world where people can share their stories without stigma, without shame, without fear, without the police mocking the person they had brought into the ER in a MH crisis. It will not be easy. I shared my story because I want there to be a safer world for this, regardless of my personal reputation. With so much stigma, it is hard for other people to share theirs.

Our treatment is supposed to be invisible, our suffering silent, our hospitalizations a secret, shameful and hidden. Many dislike it or feel uncomfortable when we talk out loud about our lived experiences and our suffering and our treatment. When we are visibly having MH needs or in distress, when we are loud about our experiences, we upset people. The disabled community that professes to be proud of different bodies and minds does those of us with mental health needs a disservice.

#CrippingTheMighty

It is hard being autistic when the public perception is against us. As an autistic, I am disabled. It is hard being disabled when the public perception is against us. It is hard when I see vast amounts of information and resources aimed at caregivers. And that is not always bad, when the stories are respectful and have insight from disabled people! Caregivers need to know how to caregive respectfully and responsibly! But so much of it is told from their perspective, and many of the stories are not respectful. The media matters and though the media reflects society, society also picks up things from the media.

What should we ask for?

• They need to pay the disabled writers who still are willing to publish with them.

A fair wage, not just scraps, too.

• They must make at least 50% of their editorial staff be disabled editors.

They must have real power and a real say.

• Signal boost and amplify writing by disabled writers as the majority of their pieces.

No more inspiration and pity parade stories, please.

• Stop using this as a purely money making platform and actually post things that support
  disabled people

The best way to do that is bullet point three. Admittedly some disabled people inspire me. Not because they're disabled, but because they are awesome. But post stories by disabled people that are not just inspiration porn, but practical. Life narratives are fine and we could all use role models, but we disabled people also need more practicality and things that give us tips on how to get around in day to day life.

-----

More posts: 

http://www.thismess.net/2015/12/two-ethical-futures-for-mighty.html 

http://iamthethunder.tumblr.com/post/135780680465/there-are-stories-about-people-with-disabilities 

the world is larger than my recycled words

How do I feel? The world is larger than the recycled words I can spit out to try to convince people of disabled people's value. On December 2, I started my second day of work; on December 2, gunmen shot up Inland Regional Center in San Bernardino, CA. It was the second mass shooting of the day. Inland Regional Center served people with developmental disabilities. I followed a new routine, too tired in the evening to draft a blog post as my newsfeed exploded with the news.

Speaker Paul Ryan announced his intent to push for the Murphy Bill. The shooters shot up a center to serve people with developmental disabilities. The Murphy Bill intends to curtail the rights of people with psychiatric disabilities.

On December 2, I also received an action alert in my inbox from the Arc. The Senate was about to repeal parts of the Affordable Care Act – parts that have helped people with disabilities. On December 3, my Facebook trending topics switched to Planned Parenthood as the Senate bill passed their version of the bill to federally defund Planned Parenthood. A sidenote was that the bill also repealed the Affordable Care Act, which has helped many people with disabilities. President Obama is expected to veto the bill.

People expressed shock and sorrow that someone would do this to a center that serves developmentally disabled people. People fawned over the woman who thanked an autistic person for decorating a cake. Representatives and Senators tweeted heartbreak about San Bernardino. They've done their good deed now, right?

* * *

Please explain to me how it is a good deed to be objectifying autistic people into inspiration porn for decorating a cake. There are far more extreme examples, like having to hold a Day of Mourning: Remembering Disabled People Murdered by Caregivers because so many people murder the people they are supposed to be providing care and/or support for. Then explain to me how people can express shock that someone shot up a center that serves developmentally disabled people.

Please explain to me how it is a good deed to tweet heartbreak about San Bernardino when Congress just decided to repeal key provisions of the ACA that would materially help disabled people. Help, rather than just fawn over someone decorating a cake and think they're helping, or assigning buddies in class to that poor disabled kid, or whatever.

Congress is moving the Murphy Bill rapidly through. H.R. 2646 is the, as Ari Ne'eman put it, “perversely named” the Helping Families In Mental Health Crisis Act.

The Murphy Bill would fundamentally strip people with psychiatric disabilities of their rights. It would

• strip HIPAA rights for anyone in treatment with a doctor or therapist for mental health needs,
• strip a great deal of funding for and place restrictions on the portion of protection and advocacy agencies (P&As) that serve people with mental illness (program is called PAIMI)
• H.R. 2646 will provide more federal funds for institutionalization. This will mean less focus on

       community-based services.

• This includes cutting the budget for the Substance Abuse and Mental Health Services Administration (SAMHSA)'s community integration projects.

• H.R. 2646 will also encourage states to allow forced-medication programs. These would be through court systems. The best way to help people get mental health treatment is to reduce stigma, make it available, and provide support. The solution is not forced treatment.

It was introduced in the wake of Sandy Hook in 2013 to manipulate the public. Don't let them.

Call or write your representative today. Tweet at your legislators. Find your rep at http://www.house.gov/representatives/ and then use the generic contact us form. Call to the Capitol Switchboard at 202-224-3121 and ask for your representative and ask them to oppose the Helping Families in Mental Health Crisis Act (HR 2646).

There is a federal relay service for d/Deaf people listed at the bottom here  http://www.house.gov/content/site_tools/accessibility.php

* * *

Explain how the Murphy Bill helps anyone with disabilities. Explain how fawning over a cake helps people with disabilities.

Explain how the “good deeds” work then.

Defining Ableism

Defining Ableism

Note: This is U.S.-centric

***

Sometimes it feels hard to define ableism when it is all around us and everywhere and so much more than language. Language contributes to, and perpetuates, ableism. Ableist acts can include language.

But I keep thinking of the time in Fall 2013 when I started having seizures from a medication interaction. The seizures were atypical. No one knew what they were, least of all me, too out of it to tell that something was actually terribly wrong.

What I most vividly recall is not even the night I had my worst episode, but the day after, when my friend and I talked about it and she'd been terrified to call 911 because of the way I was presenting. Because I was slurring incoherently like I was having some sort of non-neurological or physically based episode, and she knew what happens to people in the psychiatric systems if they go wrong. She knew the way I was presenting would land me in the psych ward.

More drastically, I think of the man who ended up in the mental health system during a crisis, and the state of Maine put his cat down and sold his home.

When we have to be so afraid of our psychiatric system...? That's the result of ableism.

Sometimes I think about all the dead and murdered people too, like Dustin Hicks, a recent one close to home. My chapter just had to write a statement on it. The news outlets declined to even reply to my encouragement to publish all or part of the statement. One news report discussed his mother and reasons why she might want to kill him. None mentioned that he deserved to live, or that his death was a tragedy. We know almost nothing about him.

When we have to issue statements over and over again urging people to report responsibly and call our deaths, not our lives, tragedies? That's the result of ableism.

I think of all the various intersections we have between other identities, too. We are not a monolith. I think of the many, many people of color with disabilities who face racism and ableism, sometimes with deadly or injurious consequences. I think of the #FreeNeli campaign, and how long it took many of us white folks to start tweeting on it after the initial call for tweets. I think of Neli himself, unjustly incarcerated for being black and autistic, in isolation. The governor finally did issue a conditional pardon.

I think of Kayleb Moon-Robinson, one of the many students of color and students with disabilities disproportionately referred to law enforcement. An eleven-year-old charged with a felony. The school to prison pipeline is real...

I think of those of us who hold many identify facets, like being LGBTQ+, a person of color, a religious minority, as well as being disabled.

When we have those intersections meet in a dangerous way, amplified by multiple marginalized identities, the ableism and other -isms and -phobias become intertwined, and not the result of purely ableism. These intersections matter.

I think of how someone got kicked out of their house by their roommates for being autistic.

I think about the story they ran on Minnesota and its group homes, the people trapped in the facilities.

I think of history, too. I think of the sordid history of locking people with psychiatric disabilities, intellectual disabilities, and developmental disabilities in institutions...

I think of the nasty history of eugenics. (The .pdf is American and German history of eugenics only, as I lack a college library to find the other physical sources. Also, there's a typo at one point where I meant to say “Indiana passed the first sterilization law in 1907.”). How it affected so many with disabilities (and other intersections).

I think of how nowhere was physically accessible, how Ed Roberts couldn't go to school unless he lived in the infirmary.

I think of activists crawling up the Capitol steps to protest and demand the ADA's passage. Don't let the black and white photographs in the coverage of the Capitol Crawl let you think that this was long-gone history. We only just hit 25 years of the ADA.

I think of the long, long history ableism has. Ableism is not new.

***

Could I go on? Yes.

I fear being too depressing. I fear a lot of things. Mostly, I am sometimes frightened of the world.

We could stand to be gentler of people still learning the new words that change so much. Ableism is far more than a list of words and we need all the good hearts we can find. Clumsy language on the part of someone who is trying (and who may have communications-based disabilities!) is something to be less concerned about than the dead and wounded around us. Clumsy language on the part of someone who is trying should, perhaps, receive calling in, not calling out.

Ableism seems insurmountable, and there will never be a great sweeping moment where we crush it entirely. But I think we're making a dent. We've come 25 years since the ADA. Seattle has some crappy curbs that Disability Rights Washington is taking them to task for. Ableism still goes on and on. But we're making a dent. The largest non-profit in the nation dedicated to eradicating autism had its donations drop. Their president is resigning, though this may have been a planned move. We are producing documentaries of our pain and sorrow, of our challenges and stories, of our hopes and dreams.

We have people among us becoming lawyers and professionals and influencing that way. We have others in grassroots advocacy and policy advocacy. We have those whose advocacy is for themselves only, fighting to survive and be heard and respected (and that's okay). We want our brethren to survive. 

Interviewing folks about NeuroTribes

This ableist article titled “Can We Please Stop Whitewashing Autism” (CN: Ableism, functioning labels, autism as tragedy narrative) is about NeuroTribes.

It’s not, as the title would suggest, about the real erasure autistic PoC face. The author is more concerned that a journalist is trying to treat autism with more respect.

It’s also by someone who has not even *read NeuroTribes with an open mind*. The author of the article has also blocked the author of NeuroTribes from a different thread. 

I'm going to to interview some people: M.o. Kelter from Invisible Strings, Chavisory, and Shannon Rosa of TPGA.

Q1: What is your reaction to the backlash articles against NeuroTribes, in general?

M.o. Kelter: Neurotribes covers so much territory that there is room for constructive criticism. And I think Steve Silberman has been more than willing to listen to constructive criticism. People have discussed stories and histories that they feel could been focused on more and I think all of that can be part of a healthy discussion. So, I would separate fair criticism from what I see as distorted, unfair criticism. For example, when people say “Neurotribes presents autism as this wonderful thing”...it means they didn't read the book. Neurotribes describes a huge, diverse range of autistic experiences. From what I can tell, most of the backlash falls into this second category, where folks are attacking the book for claims it never makes.

Shannon Rosa: Eye rolling. I've yet to see a statement from an anti-neurodiversity perspective that can't be countered by direct quotes from the book. 

I think people are upset by the success of Silberman's campaign for accepting and understanding autistic people like my son and my friends, and his rejection of the usual "brave" horror show accounts. Heavens forbid anyone attempt to derail the decades of abuse and stigma suffered by autistic people (and their families)!

Chavisory: I find it pretty predictable, honestly. Steve's research is groundbreaking, but people who are really, really sunk in the line of reasoning that autism is a terrible affliction were always going to find it all too easy to dismiss his findings as biased or wishy-washy...

Q2: So do you think the backlash articles are absolutely strawmanning the issue that he didn't include accounts of what “real autism” is like? In quotes, because all autistic people... are autistic.

Mo. Kelter: Definitely. In most of the cases I've seen, it's a willful, intentional straw man fallacy. The real fear that's motivating some of the backlash is that people might read Neurotribes and start thinking of autistics as human beings. Certain camps just don't want this. But their criticism, that “real” autism is left out: it ignores the actual content of the book. He includes a variety of experiences.

Shannon Rosa: : Well, yes. Those accusations are B.S.-- the very first autistic person mentioned in the book is a girl with "severe" autism, and she's far from the only high-support autistic person featured. Full disclosure: my family's story is included, and I find it perplexing that anyone who read about my son would question the reality of his autism.

Chavisory: Yes, for the most part. He wrote extensively about the first people diagnosed with autism in the US--Kanner's patients are literally the prototypical cases of "Kanner autism," it's just that they've been grossly misrepresented by history and frankly, by people with their own stakes in believing autism to be the horrific affliction they believe it to be. He profiled people like Leo Rosa, who as his mother reiterates pretty much constantly, is minimally verbal, has a lot of emotional regulation issues, and requires 24/7 one on one support. Even to take an obvious genius like Henry Cavendish, I hope that it was very clear from Steve's descriptions of his life just how debilitated he was by it--like, he had a second staircase built in his house just to be able to doubly avoid being seen by anyone else ever? That's an *extreme* level of exposure anxiety and aversion to human contact, and obviously it had a profound effect on how Cavendish had to live his life.

Q3: How would you address claims that he's using neurodiversity as a tool to make things all glossy? Is that also a strawman argument?

M.o. Kelter: It's an argument that cherry picks a very, very small portion of the book and then blows it out of proportion. The book includes a few profiles of autistic savants. So...is this too glossy? No. What's happening here is that people are shooting the messenger. Silberman is covering a huge swathe of history...and until recently? Very, very few autistic experiences were recorded. One reason Neurotribes includes a few autistic savants is because those were the only stories that were recorded for a long time. Autistics with communication challenges, or with greater self-care challenges, and so on...they were institutionalized, often killed, always hidden away. Neurotribes is not concealing autistic stories. Society did that. It still does that. What the book tries to do is look at that history...the history of how autistics were defined and treated and prevented from being part of the society around them. It's a messenger about autism history, not the mechanism suppressing that history. I think some people are just very reluctant to see the ugly truth about why autistic stories were completely absent for so long.

Shannon Rosa: I would say those claims are being delivered by people who are preemptively prejudiced, don't understand neurodiversity at all, hate-read the book, and/or somehow failed to notice anything but the "strange gift" section of this passage:

"Whatever autism is, it is not a unique product of modern civilization. It is a strange gift from our deep past, passed down through millions of years of evolution.Neurodiversity advocates propose that instead of viewing this gift as an error of nature—a puzzle to be solved and eliminated with techniques like prenatal testing and selective abortion—society should regard it as a valuable part of humanity’s genetic legacy, while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support."

Chavisory: Mostly I think the people making that claim either have never understood neurodiversity or are deliberately misrepresenting it. More the former than the latter...I just mainly think that a ton of these people *cannot* get their heads around the concept that many human abilities and inabilities are two sides of the same coin, or that autism, which *looks* only like a severe set of inabilities to them, has another side that might not be apparent to someone determined not to see it.

Q4: What do you think the message of NeuroTribes is? What it's trying to say about autism? How do you think it does with encompassing a variety of autistic people?

M.o. Kelter: For me, the message is: autism has always been here. We've always been afraid of it, tried to hide it. And it's time to see autistics as human beings, not as “diseased”, “tragic” or part of an “epidemic”. I wouldn't even say most of the book has a “message”, since it's not about Silberman's views...it is primarily a history of how autism was researched and defined over many decades...and that history speaks for itself, in a lot of ways. Someone can sincerely disagree with Silberman's personal take on any given issue...but you can't disagree with facts. And most of the book is a historical overview, not an opinion piece.

Shannon Rosa: I doubt Silberman would phrase it quite this way, but in my opinion NeuroTribes is a history of how an entire innocent population has historically and systematically been [expletive] over, maltreated, and ostracized, how we can stop doing that, and how we can start treating autistic people like human beings, whatever their abilities or needs.

Chavisory: I think NeuroTribes primarily succeeds at relating how the story of autism, and thus our perceptions of autistic people, has been so distorted by history, by bad research, by self-serving researchers, by the ease with which various popular self-appointed experts have been able to use autistic people as a projection screen for whatever their own fears and obsessions were. To say that it establishes that autism has been historically misrepresented is an understatement.

I do wish that it had represented a wider variety of autistic people...but not in the ways that most people are complaining about. And I do understand that Silberman was working under editorial constraints that probably made inclusion of everything *he* wanted to include difficult.

But I would've liked to have seen more representation of what was happening to undiagnosed autistic people prior to the 1990's who *weren't* in the sciences or tech sector. Rural autistic people, autistic people in the arts and humanities, autistic people who were misdiagnosed and/or institutionalized etc., because the expanded diagnostic criteria actually included *them* for the first time as well, autistic people of color....

But like, there's just not a ton of material openly available about these people, because of the distortion that Silberman is writing about.

Q5: What are some things you hope for moving forward from NeuroTribes?

M.o. Kelter: For too long, the window of “what can we discuss when we discuss autism?” has been skewed in this very negative, inaccurate direction. People were focused on conspiracy theories and vaccine nonsense, for example. My hope is that Neurotribes pushes that window in a new, better direction. Hopefully we can talk about, in a bigger public sphere, autistic lives and experiences (and this means the full range of autistic experiences, with no stories left out or suppressed), so that people are learning to see these issues in a more constructive, informed way.

Shannon Rosa: I hope it inspires well-funded philanthropists to work on items to improve the day-to-day quality of life for autistic people, things like affordable alternative communication strategies and equipment, or gear for coping with sensory issues (e.g., inexpensive noise canceling headphones in every classroom). 

I hope it inspires more autism professionals to apply neurodiversity principles to their work.

I hope it allows parents to love their autistic kids more freely.

And I hope it helps autistic people feel empowered, vindicated, rightfully angry, visible, and connected.

Chavisory: I would really hope that more and more of the general reading public would start looking towards autistic people to understand our stories and who we are. I hope that NeuroTribes will make people who are still learning, or don't know much at all about autism, or still questioning what they think, feel compelled to weigh accounts by autistic people against the professional misconceptions. Like, NeuroTribes will probably be the first thing that some people ever read about autism, and that makes me really happy to think about.

I hope that more people will think seriously about whether, given the known contributions of autistic people to human culture, whether erasing us, and our cognitive diversity, from the future is really what we should be striving to do.