After Bell sterilized Carrie Buck, he was told “a hundred years from now… your descendants may well be proud.”

And other reasons Adam Cohen is wrong about eugenics and gene editing

On February 14, 2017, the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) released a report entitled “Human Genome Editing: Science, Ethics, and Governance.” The report proclaimed that, with caution, limited clinical tests of genome editing should go forward. But human genome editing is controversial. Many international reports and laws support bans or limitations on genome editing.

The report departs from these internationally accepted ethics and laws, wrote the Center for Genetics and Society. (CGS). CGS is a science and bioethics group advocating “responsible uses and effective social governance” of human genetics. CGS put out official comments and a blog post on the report.  CGS also mentions the possibility of eugenics.

On March 17, 2017, Adam Cohen – author of Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck – began an op-ed in the Los Angeles Times with the words:

We entered a new phase as a species when Chinese scientists altered a human embryo to remove a potentially fatal blood disorder — not only from the baby, but all of its descendants…Last month, the scientific establishment weighed in. A National Academy of Sciences and National Academy of Medicine joint committee endorsed embryo editing aimed at genes that cause serious diseases when there is “no reasonable alternative.” …But the committee was also right to support limited embryo editing. This time around, eugenics could be a force for good.

He concludes the op-ed with:

Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.

Cohen’s op-ed, as disability rights journalist David Perry notes, “seems to miss the lessons of the history he synthesizes in his book… Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.”

Further, Cohen misses several other points.

Eugenics was not just state-sanctioned sterilization. Eugenics was not just about preventing “the unfit” from having children. It was, and is, also about immigration, “racial purity,” and eliminating the “mentally defective” population through any means – whether by institutionalizing people judged as such, sterilizing them, preventing their marriage, or in the case of the Nazis, also murdering them.  Eugenicists were not worried about the people with any kinds of hereditary conditions, real or perceived, and far more keen on eliminating the “threat” to the sanctity of American society and economics.

Cohen asks the question if eugenics can be used for good. A colleague told Dr. John H. Bell after Bell sterilized Carrie Buck, “a hundred years from now you will still have a place in this history of which your descendants may well be proud.” Eugenicists believed they had the superior knowledge to know what was best for society, doing public good, based on pseudoscience and their own intensely biased beliefs. They believed future generations would be proud of their work – future generations that contained no “mental defectives,” generations that had been altered by them.

Cohen said “yes” in answer to his question, that the new eugenics can be for people with genetic conditions – that eugenics can be used for good. But he acknowledges that future generations would be permanently altered.

There is no such thing as good eugenics, and Cohen misses that point by a wide mark.

A history of progressive ableism that remains today

For clarity: I know that other progressive activists do great work. This is an anti-ableism post. It should be interpreted in this manner rather than as anti-progressive. 

Introduction

Too often, progressives use ableism to accomplish their goals. I do not mean just using some words that many disabled people consider offensive.  I mean things like advocating for ableist gun reform laws. I also mean things like attributing people’s worst traits to mental health disabilities, like people do with Trump.

In the 20th century, progressives gained momentum. Progressives of this time were not the same as they are today, but the ableism is still around.  Then, the cause to rally around was eugenics. I am providing eugenics as a historical example of progressive ableism – and will point out how it still lurks in undertows of thought.

Historical example: The early 20th century and Progressive Era eugenics

Eugenics was a movement that gained some level of popularity in the early 20th century (and still continues in modern forms today). Supporters of eugenics wanted to prevent the procreation of the “unfit” and promote “better breeding.” Eugenics was popular with progressives, including reformers and activists, of the early 20th century.

The Eugenics Record Office (ERO), intended to serve as a hub for American eugenics research, was financed at one point by the Carnegie Institution. Teddy Roosevelt once wrote a letter to eugenicist Charles Davenport of the ERO about “degenerates” that said:

Farmers who permitted their best stock not to breed, and let all the increase come from the worst stock, would be treated as fit inmates for an asylum. Yet we fail to understand that such conduct is rational compared to the conduct of a nation which permits unlimited breeding from the worst stocks, physically and morally… Someday we will realize that the prime duty… of the good citizen of the right type, is to leave his or her blood behind him in the world; and that we have no business to permit the perpetuation of citizens of the wrong type.

A reformer included Victoria Woodhull, a suffragist known for being the first woman to run for president (in 1872). Another was inventor Alexander Graham Bell. Several groups of feminist reformers, including the National League of Women Voters, had eugenics-based legal reform as part of their goals.

Stop making me have to defend insidious people from ableism

Bigoted actions and words from Trump are the result of bigotry. And bigotry is not a mental health disability, though people with mental health disabilities can also be bigots. We are people and vary in thoughts and opinions. But I’d really like prominent progressive activists to acknowledge this and stop making the case for Trump being crazy. That way, people with mental health disabilities won’t face as much ableism. And I won’t have to keep defending insidious people from ableism. 

I defend even people I loathe from ableism because public figure he may be, but attributing bigotry to disability hurts all people with mental health disabilities. And I do it also because when progressives pull out the “But no sane person would do that!” or “Trump is crazy!” lines, this is what they are saying:

Only crazy people can be responsible for such vile acts.

It’s the line of thinking that mental health disability must be responsible for acts society can’t explain, acts society considers terrible. The unintentional undertones of this speak of eugenics to me. Eugenicists of the past posited that many people, especially marginalized people, had increased rates of poverty and crime due to mental and moral “deficits.”

Today, mental health is blamed for everything, from mass shootings to having a poor moral compass – and Donald Trump’s actions and bigotry. Right-wingers and the GOP are the party of eugenics themselves, for sure, and I find that loathsome. But progressives should stop blaming mental health as they oppose damaging policies and actions.  

Related Posts:

Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.

 

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.

Autistic Unemployment: False Solutions and the Tech Industry Narrative

A Response to the WIRED Article “Autistic People Can Solve Our Cybersecurity Crisis” by Kevin Pelphrey

I have a familial connection who used to work for a medical technology company. Her then-supervisor knew I’m autistic. Then-supervisor would ask familial connection if there was a way to get me involved with the company. Familial connection would inform then-supervisor that autistics were not all the same: that I was not, in fact, a software programmer and also could not read code at superspeed and catch errors. Repeat cycle several times.

(I am good with social media, perhaps. But I can barely scrape together rudimentary HTML to put jump links on the Resources page for this blog, and it took hours of Googling and many failed attempts. I can’t write CSS. I can’t write JavaScript. I can’t design webpages or websites.)

There is nothing wrong with autistics who are good or excel at coding and software programming and technology and mechanical things. Autistics who are good at those things definitely exist. There are many things wrong with assuming all autistics are the same, that we all have the innate ability to be computer, mechanical, and software geniuses. To take it a step further: it is also wrong to assume that autistic people are valuable because of a handful of us do possess that kind of technological and mechanical ability.  

(…We’re people and have a wide array of skillsets and interests, and some of us are really good at computers, like some non-autistic people are!)

Those things are what is wrong with the WIRED article “Autistic People Can Solve Our Cybersecurity Crisis,” along with many other direct messages and subtle implications (including a not-so-pleasant quote referring to autistic children growing up as “the coming tsunami of adults with autism”).

Author Kevin Pelphrey, director of the George Washington University’s autism research institute, argues that we can fix the 70-90% unemployment rate for autistics by hiring us in the cybersecurity industry. He further argues that the this industry has a shortage of labor, so hiring us would fix that problem. His main evidence behind this argument seems to be the fact of Alan Turing’s existence.

In his argument, he utterly dismisses autistics with intellectual and/or other cognitive disabilities as having worth by writing, “At the same time, more than three-quarters of cognitively able individuals with autism have aptitudes and interests that make them well suited to cybersecurity careers. These include being very analytical and detail-oriented as well as honest and respectful of rules.”

It’s hard to know where to begin with unpacking the ableism toward autistic people, especially autistics with cognitive and/or intellectual disabilities, in that quote. It employs a number of tropes, reminiscent of the film Rain Man and common literary tropes. Lastly, he simplifies the solution to a complex issue around employment the cybersecurity industry hiring “cognitively able” autistic people.

Since only some of us are good at tech and we are not, in fact, all Alan Turing, this proposed solution will result in employment for far fewer people than Pelphrey envisions. This is a grievous disservice to autistic people, many of whom are struggling to find employment – and quite often in fields other than tech. This article tells employers that autistic people are only good at tech. It tells the general public that our only redeeming quality is being good at tech, and that we are only worth something if we stop the “monumental waste of human talent.”

The author heads a research institute on autism, but rather distressingly, cannot seem to move past a trope that all autistic people should be employed in tech. Our skillsets and interests are as varied and diverse as autistic people’s traits are. If we want employment, we should receive support to work where we want to. We should receive support to engage in our interests. Our contributions are valuable, regardless of whether they are in the workplace.

The solution to the unemployment rates lies not with increasing supported employment to only one industry. Whether it is through a government vocational program or an autistic youth’s transition planning in school for adulthood or a disability advocacy group, it lies with increasing support for us to do what we want to do.

the facts I have, and what I still don’t know: notes on autistic trans selfhood

I am 1 hour late to Transgender Day of Remembrance, if we are going by Eastern Time.

. . .

I wanted to write something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even if just a little, in a time when we need it the most. I wanted to write something about the times we’re in when trans people are considering – or are – de-transitioning. I wanted to write about how we should not be passing around suicide hotlines after an election and how Trans Lifeline is overloaded with calls.

I wanted to write about the people I have never met and maybe never will, because they are dead (in which case definitely never will), or because I don’t know how to un-silo my identities sometimes, or convince people to take my disabled identity along with me because you cannot separate me from my disability and I cannot stop being disabled just because I enter your spaces and everything is overwhelmingly bright and loud but I cannot figure how to ask everyone to tone it down some because I am afraid of accidentally trying to silence you.

(I only went to my first pride in 2015 because I was terrified of the noise, and wore my noise-cancelling headphones with music playing and carried a sign that said “Autistic and LGBTQ+ Pride” and flapped a lot to self-regulate and tried to avoid the crowds and tried to stick with the person I was with and still had to leave before too long).

. . .

I wanted to write about how much it hurts to know that all your communities have a suicide problem and all your communities have members get murdered and you feel like you have to mourn both separately even though the following facts are true:

The autistic community has a higher than average chance of being trans, non-binary, or gender non-conforming and autistic adults without intellectual disabilities are nine times more likely to die by suicide than their non-autistic peers. There is a dedicated site to those we have lost to filicide. The trans community reports a 41% suicide attempt rate, as opposed to 4.6% of the general population, and 2016 breaks the record for most trans people murdered in a year.

What happens when you’re trans and autistic?

I mourn the deaths.

. . .

I do not know the answers to how I will act to be not just an autistic activist with mental health disabilities, but also a trans activist who fights more deaths in the trans community. I want to be an activist who is aware of the intersections that trans people have – trans people of color, autistic trans people, otherwise disabled trans people, and so many other intersections – and tries to work in the space I have and not overtake others’ voices.

But I am still working out my non-binary and trans identity. I am still trying to figure out how to create spaces that work for both autistic trans people like me and non-autistic trans people. I am still working on figuring out how to be a part of more than one community.

. . .

I wanted to write about something political. I wanted to write something that would move people. I wanted to write something that said all the right things. I wanted to write something that would bring hope, even just a little, in a time we need it the most.

I wrote what I could instead.

Stop Telling Disabled People We Can Do Anything by Force of Will

Trying to Do What I Simply Could Not

On Monday, October 10, I accidentally gave myself a concussion. It was not glamorous as people would have you believe; I concussed myself on a wall of all things. I collected myself, went to work, and then work convinced me to go to urgent care after a persistent headache for three hours.

That is what I remember of Monday. It’s a really great thing that they gave me super detailed discharge instructions, because I remember almost nothing of being seen at the urgent care place. I don’t really remember Tuesday, but I’m pretty sure I slept for most of it. On Wednesday I went to therapy and to a psychiatry appointment to get my ADHD and other psych meds. I don’t remember much of what was said during either of them. I do remember not being able to sleep more than six and a half hours in two days.

Since Wednesday, I have been trying to work. I did manage to do some things on Thursday, but not as much as I would have liked (and it took me five or six hours to do one task). Apart from that brief time on Thursday, I have not written anything longer than a paragraph and besides informal communication, or done anything requiring more than two steps (in this case, opening the Google Doc! And then translating my thoughts into words). I haven’t been able to update my Psych Ward Reviews page with categories and tags, edit a draft of an article for a multimedia outlet, or figure out how to microwave anything that requires you to microwave it in two steps.

This is not for lack of trying. I have sat in front of the computer for hours, opening Google Docs and work related items. But whenever I tried to focus, everything coherent disappeared and many different things bounced around my brain. My brain simply hasn’t been able to connect the dots. Executive dysfunction, which I already have a difficult time with, has been several times more intense.

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How to keep a heating pad on your head: Wrap a scarf around your entire self, basically. Begin image description: Kit, a white nonbinary person with tortoiseshell glasses, propped on a colorful blanket. Kit’s hair is mostly covered by a scarf to hold a heating pad in place. End image description.

Stop Telling Us We Can Do Anything

So, this is in fact a disability post (the discussion of temporary disability as a thing is complicated, so I’m not going to go into that. But some people do end up disabled from post-concussion effects that can last for a really long time). But my main point is that force of will isn’t enough to “overcome” sometimes. Multiple disabled people have talked about how “you can put anything you set your mind to!” is damaging for disabled people.

As Real Social Skills notes in the blog post “You can do more when you remember that you’re disabled,” when people assume others have the same cognitive and physical abilities, “This often leads to the assumption that people who aren’t doing a task either haven’t been told what to do, or aren’t sufficiently motivated to do it.” I internalized this – I kept sitting there for hours, berating myself for not being able to do things I usually could. When I ran out of ADHD meds once, I did the same thing.

A fellow disabled person, Ruti Regan, recently introduced me to the book “Can I Play Too?” It’s a children’s book, but it really illustrates one of my points – in this case, the snake wants to play catch with an elephant and a pig. The elephant and the pig aren’t sure how to include the snake. The snake has no arms or legs to play catch the traditional way, and (ironically to me at the moment) ends up with the ball bouncing off its head painfully several times before wanting to give up. But then the trio comes up with an idea to use the snake as the “ball” to toss back and forth, and everyone gets to participate.

It’s important to remember that disabled people have different physical and cognitive ways of being, and that we shouldn’t have to “overcome” our disability to be meaningfully included – and no, we can’t “overcome” things just by “putting our minds to it.”

On #WorldMentalHealthDay

In much the same way I am tired of awareness for autism, I am tired of mental health awareness. I understand that autism is different from mental health disabilities, that there are also many autistic people with mental health disabilities who dislike autism awareness but don’t mind mental health awareness. I am not one of them.

When I hear you talk about awareness for mental health disabilities, when you say, “This is a serious condition affecting this many people,” or “this many people have a mental illness!” or “we need to focus on access to care,” I hear, much like many autistics hear the same when autism awareness campaigns occur:

We are an epidemic. We are a public health crisis (and get named as such). We are only DSM diagnoses and flight risks and patients and if we’re not trying to hide ourselves we are a failure to a model that teaches us the best patients are telling their stories of how they got better to end the stigma. We are merely the rates of our mental health disabilities among people.

In fact, I would argue that only having stories of getting better hurts those people who may not get better. And why can’t we talk about issues like employment (or better benefits for those who would have a hard time working), access to housing, before access to care? Access to care, if desired, should follow meeting basic needs. It’s a little hard to focus on any sort of treatment when basic needs aren’t being met.

I am tired of awareness. Why do we have more people talking about access to hospitalization instead of peer respite care? Where are our community-based supports? Where are our warmline projects to prevent crises? Where are our self-directed services? Where are they?

Autistics in Mental Health Crisis (third in a series)

Autistics in Crisis Part Three: Stop Mishandling First Interactions with People in Crisis

Even if we had the best resources for Autistics to access, mental health crises in Autistic people will still sometimes occur, and there will still be situations where a non-crisis gets reported to authorities as such. I feel fortunate. My experiences, particularly at GW, were not ideal. But I did not have forcible intervention from authorities. I feel fortunate because even though I am at lower risk of injury from crisis intervention teams (as I am white), forcible admission to a psych hospital (also known as, you know, forced institutionalization, whether short term or long term) is probably doubly traumatic.

I want to talk about a couple of things in this post:

  • How crisis intervention often goes wrong in regards to the police, and the disproportionate risk that autistics of color (with and without mental health disabilities) face here, along with autistics of other marginalized groups
  • Some steps to improve the first interactions by police and first responders with autistic people in crisis, both policy and otherwise

How First Interactions with Autistics in Crisis Go Wrong

For Arnaldo Rios-Soto, an autistic Latino young man now institutionalized in Carlton Palms because the state of Florida fails to provide enough community supports to its disabled community members, even playing with a toy truck in the street resulted in a person calling 911 to report Rios-Soto being suicidal and a threat. The police shot and injured his black therapist, Charles Kinsey, and then claimed they meant to shoot Rios-Soto. The police responded to the scene of an alleged mental health crisis involving black and brown people, and shot Charles Kinsey.

As Autistic activists of color Lydia Brown, Finn Gardiner, and Manuel Díaz wrote for Sojourners:…Whether the officer was actually aiming for Kinsey or Rios-Soto, he has become part of a national pattern. Disabled people represent between one-third and one-half of all people killed by police. Black and brown people are extremely disproportionately likely to die in police-involved shootings… If you’re black or brown and disabled, your likelihood of being targeted by police only increases.”

When I asked Timotheus Gordon, Jr., who in his own words is  “an autistic African-American blogger, writer, event photographer and self-advocate in Chicago” what he felt when he heard what the police said about aiming for Rios-Soto, Gordon told me: “…the fact that the police tried to shoot Rios-Soto instead of Kinsey confirms my fear of walking on the street as an autistic person of color… Disabled people of color can play with a red toy truck, calm down from a meltdown, or rollerblade peacefully on the block and still get harassed by people.”

Finn Gardiner, who co-authored the Sojourners piece, added: “The issue of police violence is compounded if you belong to more than one marginalised community. For example, if you’re an autistic, trans person of colour, the combined effects of racism, transphobia and ableism will make you even more at risk for harm… You may have your identity completely erased. People may only see your race and not your gender identity or your disability.”

Crisis intervention also went wrong in the case of Kayden Clarke, a trans man in Mesa, Arizona. Denied a recommendation for hormone replacement therapy by his therapist because of an Asperger’s diagnosis (placing him on the autism spectrum), he became suicidal. In early 2016, after receiving a report from a worried person, the police arrived at his apartment – and shot Clarke, killing him. The police knew Clarke had an Asperger’s diagnosis.

And in February 2012, Chicago-area police shot and killed Stephon Watts, a Black Autistic teenager as he panicked while holding a knife. I wrote in February 2016 (on my previous blog), “…the police had shown up to “subdue” him…. 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… As a Black Autistic, Watts faced multiple marginalization from society, with ableism and racism as a reaction that killed him.” The police knew Watts was Autistic.

And the New York Times recently reported that the NYPD uses “restraining bags” for arrests and crisis intervention, particularly in situations involving those with mental health disabilities – as the Times noted, “the bags are used to restrain those judged to be emotionally disturbed.”

These are just a few examples of the way police handle crises. 

What Are the Solutions?

Like Brown, Gardiner and Díaz, Gordon notes which people are often the targets of such harassment and police shootings: “I also dislike [the] repetitive connection between police violence and victims being disabled people of color.” Gordon went to say what he thinks is a solution to police shootings and mishandling of crisis intervention: “I want racial justice and disability rights/justice organizations to collaborate…  The collaboration MUST include organizers and activists in the disability community and ensure that actions are accessible to all participants.” Gardiner agreed with Gordon on the need for collaboration.

In terms of policy work that advocates can work for, a broad measure for police accountability overall as opposed to just crisis handling is H.R. 2302, the Police Training and Independent Review Act, which would cover comprehensive reform – not just police training on disability and racial/ethnic bias, which many of the officers involved in shootings receive – it also requires states to appoint independent prosecutors to investigate and prosecute police-involved shootings before receiving certain federal funding.

More specifically, we also need to create mobile crisis teams that aren’t police. 911 operators can dispatch those teams instead of law enforcement. Gardiner told me that crisis teams that know how to “engage with marginalised populations” are vital.

Gardiner also recommended the creation of “comprehensive peer and community-based supports that take into account the effects of marginalisation.” He also recommended “peer support like… warm lines*, advocating for comprehensive, long-term training for law enforcement, [and] encouraging police departments to hire people who are aware of racial justice issues.”

*Warm lines are like hotlines people having a hard time can call when they are not yet in crisis and need someone to talk to. I elaborate on them in Part Two of this series. 

. . .

This is the third out of a series of posts.

About the Interviewees

Timotheus Gordon, Jr., also known as Pharaoh Inkabuss, is (in his own words), an autistic African-American blogger, writer, event photographer and self-advocate in Chicago. He is the creator of “The Black Autist”, a blog that emphasizes autism/disability acceptance among people of color, including people in the black community. Gordon is a first year Ph.D student at University of Illinois-Chicago, pursuing a degree in disability studies. Follow his Tumblr blog for updates: http://blackautist.tumblr.com/

Finn Gardiner is a Black, queer, Autistic advocate and activist in the Boston area. He currently works for the Autistic Self Advocacy Network (ASAN) as their Boston Community Coordinator, leads the ASAN Greater Boston chapter, and previously worked for the Institute for Community Inclusion as a Gopen Fellow. He has a B.A. in sociology from Tufts University and is currently a public policy masters student at the Heller School for Social Policy and Management at Brandeis University. Follow his blog for updates: http://expectedly.org/blog/