Saturday, July 30, 2016

The Effects of Stigmatizing Language on Suicidal Autistics

M. Kelter

Depressing fog.
Photo by Boudewijn Berends,
used under a Creative Commons license
[image: head and shoulders of a person wearing glasses
backlit by partially-lighted fog and clouds.]
When it comes to online discussions about autism issues, I regularly interact with two realms.

The first realm is one we're all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions ... just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook.

The second realm consists of an invisible community. It's made up of people who are absorbing every discussion, every debate, every article ... yet they are not participating, not sharing their own ideas. They're just there, quietly and attentively taking it all in.

This second group is made up of suicidal autistics.

This is not just an invisible community, it's a large one. One recent study found that two thirds of spectrum-diagnosed adults surveyed had contemplated suicide; 35 percent had actually made plans or an attempt.

And given the huge number of autistics who go undiagnosed, due largely to gender and racial bias structured into the diagnostic process, the rates of suicidal thought and action may actually be much higher.

I get a lot of emails from this second group.

A few years ago, I started writing online, sharing my experiences with autism and depression. Eventually, people started to write back. Their stories and circumstances vary, but the underlying thoughts are always the same.

These are folks who are struggling to find a place in life. They don't see a world that wants them. They hate who they are. They hate their differences. They want to die.

No matter how many emails I get, from different points of view, those reactions are always the same.

I mention this because- people who spend their days in the first realm? Sharing articles and reactions and opinions about autism? I don't think they have any idea that this second realm exists. I don't think they have any idea that this second realm is right there, every day, listening to and reading everything that is said about the spectrum.

Depressed autistics very much want to know if they should be here, in this world. They want to know if there's any place at all where they can exist and breathe and feel at peace with their differences.

Some are interested in connecting with others. They are profoundly lonely. Some prefer solitude. They're not lonely, but wonder why they're alive. All of them are grappling with self-hate (autism doesn't cause depression, but a world hostile towards difference certainly can). And all of them, at some point, are sorting through online discussions in order to gather information and answer the lethal questions posed by depression.

They read your posts. They absorb your opinions.

If more people knew about this second realm? I don't think they would use a lot of the words that are frequently brought up in autism discussions. Words like “burden,” “diseased,” “emotionless” ... phrases like “closed off,” “shut down,” “lacking in empathy.”

A huge portion of the vocabulary surrounding autism is inaccurate and damaging ... yet readily accepted by the world at large. People have used this kind of language for so long that they're not even aware of what they're saying.

Just this week, Rolling Stone magazine featured an article about autism. In it, a father referred to his autistic son as “rabid”...he described raising him as a “slow death.” The entire article was characterized by alarmist phrasing like this. One could read it and imagine the author was describing animals, not human beings.

The worst purveyors of dehumanizing rhetoric are usually the fake experts, pseudo-scientists and wanna-be gurus who have a pet theory about autism causation. The way it works is that, if you have one of these theories, you generally need to scare people into listening to you. If people aren't scared, they're more likely to question the scientific validity behind this or that theory. And the result is a lot of end times, apocalyptic fear-mongering. Autism is a disease ... an epidemic. A scourge.

Self-described advocates seeking to fund research also put a lot of effort into ensuring that autism is made to seem as frightening as possible. Like the author of the Rolling Stone article, this crowd loves  over-wrought phrasing, with autistics often referred to as tragic carriers of disease. Jill Escher, the president of the San Francisco Bay Area Autism Society -- a group that is supposed to be dedicated to the betterment of autistic people -- has characterized autism as a "crazy epidemic of really horrific neurodevelopmental disability" that "prevents you from living a normal life."

Meanwhile: suicidal autistics are reading every word. Every single one of them. They already feel broken. They already question if they are “really” human. And the rest of the world is willfully, sometimes gleefully, heaping salt onto these emotional wounds -- all for the sake of cheap rhetorical victories.

What's most frustrating to me is that nothing about this issue is complicated. Don't use dehumanizing rhetoric. The end. It's that simple. Many different areas of autism can be hard to grapple with, discuss. Word selection is not one of those areas. It's an easy fix. Don't use dehumanizing rhetoric.

Not that this means anything to the fake experts, the pseudo-scientists, the wanna-be gurus. They're too often working an angle, not engaging in real issues. But I have to believe that the advocacy community would at least consider putting more thought into the words they use. I have to believe they can look around at the world and see what happens to vulnerable groups, when we conceal them behind rhetoric usually reserved for plagues and animals.

The media, for its part, needs to stop relying on perspectives that wallow in misery just because they provides a convenient shortcut to emotional impact. No reader, viewer, consumer -- not one conceivable audience -- can benefit from stories that lapse into outdated, stigmatizing narratives about autism.

In other words, it's not always about choosing the right words. Sometimes it's about lifting up the right voices. It's a specific area where the media can do a better job of educating itself about autism, and learning to make distinctions between maudlin cliches and authentic perspectives.

Usually when I make these points during online discussions, the push back goes something like this: "But we have to be able to tell our story." Or: "We're just being honest about what our life is like."
I'm calling fallacy here.

I don't buy that the topic of autism compels us to denigrate autistics. You can tell your story ... and you can refrain from using stigmatizing language. Both of those things are possible, at the same time.

It's a false dilemma to suggest otherwise. It's a false dilemma to imply some hard choice between truth and decency. We can talk about the hard stuff. We can talk about the difficult days. And we can elevate our words and ideas.

That's achievable. I refuse to accept any attempt at a separation between what's honest and what's humane.

The impact of demeaning rhetoric on suicidal thinking is by no means the only concern here. The recent mass-murder of disabled people in Sagamihara, Japan demonstrates the catastrophic effect of viewing people with disabilities as problems, instead of human beings.

I just know that, most days, I visit an online world where a lot of discussions are happening about autism. And I see an over-abundance of truly awful words that are too often passively accepted due to their ubiquity.

Then I get emails from autistics who want to die. They're online and I know they are reading the same discussions I read. They're reaching out, searching, and coming across words like "burden," "diseased," "rabid."

I know from personal experience: depressed minds have an uncanny ability to seek out and find ideas that confirm their world view. They will readily absorb anything that reinforces the worst interpretations about who they are. And careless autism discussions too often provide fuel for that self-destructive process.

Think about these two realms.

One noisy, fractious. The other invisible, attentive.

Different groups between which there is zero separation. They share the exact same space. And yet, it is painfully clear to me that one group has no idea that the other exists. That an unseen community is right there, reading and absorbing and quietly taking every discussion to heart, all while a very dark calculus plays out in their mind.

If you haven't thought a great deal about suicidal autistics, you should start. You really should. You should think about their proximity to the ideas you share online.

You should know: what are mere words to you may be another person's outcome.


Anyone who is suicidal may receive immediate help by logging onto or by calling 1-800-SUICIDE. Please know that you are not alone.

For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:

Wednesday, July 27, 2016

#BlackDisabledLivesMatter vs #AllDisabledLivesMatter

Pharaoh Inkabuss
[Photo: Black person at outdoors demonstration holding two signs.
One says, "Black, Autistic, Proud" with the Black Power flag
and power fist. The other says "Black Disabled Lives Matter."]
Each July, hundreds of people participate in the Chicago Disability Pride Parade, where Chicagoans see the living history of the contributions the disability community made in Chicago. It’s also where participants can enjoy meeting fellow members of the disability community, and display their pride in their community. July 23rd of this year was my second Disability Pride Parade; I marched on behalf of the Chicagoland Chapter of Autistic Self-Advocacy Network (ASAN).

My co-chapter leader, Amanda, made a few signs for the parade; one of them had a message on each side. On one of the sides, it reads: “Black Disabled Lives Matter.” I marveled at the sign and I carried it with my right hand. I also happened to carry a sign on my right hand, that says: “BLACK, ÂûTISTIC, PROUD.” I paraded around with both signs, showing them to the curious audience and media. Quite a few people took pictures of my signs and posted them on Facebook, where a lot of Facebook users commented or liked them.

Two days later, I shared a picture of the “Black Disabled Lives Matter” sign on my personal Facebook account. While a good number of Facebook friends like it, the post became a breeding ground for mini-dispute. On one hand, someone wrote, “All Disabled Lives Matter,” and another agreed. Another person attempted to briefly explain how mentioning “All Disabled Lives Matter” is reactionary and is used to discredit those who say “Black Disability Lives Matter.” I had an itch to immediately respond. However, I postponed explaining “All Disabled Lives Matter” and “Black Disabled Lives Matter,” until now. I needed a little more time to investigate some things.

My solution: create a Twitter poll to see which of the two phrases/hashtags appear more problematic. According to the results, 92% of the 38 tweeters who responded to the poll thought #AllDisabledLivesMatter is problematic. Just 8% said #BlackDisabledLivesMatter is problematic.

[Photo: Screenshot of pinned tweet poll from The Black Autist (@BlackAutist)
saying, "#DisabilityPride Before I write today's post:
I have a curious question to ask: Which hashtag sounds more problematic?"
Beneath that, 8% selected #BlackDisabledLivesMatter
and 92% selected #AllDisabledLivesMatter from 39 votes]
I absolutely agree that #AllDisabledLivesMatter and should matter. I don’t want what happened in Japan to happen to anyone in the disability community, including my friends and allies in that community.

Disabled people are four to ten times more likely to face violent crimes than the general population, including police violence, sexual assault, hate crime, bullying, robbery, and murder. According to the recent Ruderman report on media portrayal of police violence towards people with disabilities, at least one third to one half of all police violence cases covered by the media involves the disability community. In fact, half of the 375-500 U.S. victims of police brutality each year have mental disabilitie, as mentioned in a 2015 ACLU brief on San Francisco v. Sheehan: a case where police shot Teresa Sheehan five times, though she was having a “psychiatric emergency.”

We live in a society where only the abled-bodied and the neurotypical survive, and the disabled are either locked up, kept at home, institutionalized or slaughtered. Just like any other disability rights/justice activists and advocates, I envision a world where the disability community can work, live, procreate, defend themselves, pursue dreams, and enjoy life & freedom as they please.

All disabled lives matter, if and only if people generally care that ALL disabled lives matter. For instance, you would be just as willing to march and protest against the police murdering an innocent black autistic person from the inner city as you would with police brutality towards an innocent white autistic person from the suburbs. Like with #AllLivesMatter responding to #BlackLivesMatter, however, #AllDisabledLivesMatter can be used only in haste and retaliation against #BlackDisabledLivesMatter. You can assume that with the latter, the person is not considering other people. Or if you want to reach for a possible deeper meaning, it leaves out the white disability community or it reminds the privileged white ruling class of their role in the violence towards black disabled people.

#BlackDisabledLivesMatter actually reads Black Disabled Lives SHOULD Matter, not Only Black Disabled Lives Matter and F*** Everyone Else. Black disabled people affected by violence are seldom mentioned in the media, or they are mentioned only by name but without any mention of their disability (there are instances that the disability is reported afterwards). The black disability community, including myself, are scared for our lives. Recent victims of police brutality, such as Laquan McDonald, Sandra Bland, and Freddie Gray, were not only black but also had a disability of some sort. Certain police officers can get away with murdering black disabled people; just take a look at the two officers who got away with murdering Stephon Watts in cold blood. We are also subjected to bullying, filicide, murder, sexual assault, emotional/psychological abuse, child abuse, theft, police profiling, and manipulation from negative influences daily.

To make matters worse, our own black community is inaccessible and doesn’t have many resources to go to. African-American culture seems to have been fearing disability for centuries; starting with slavery when the disabled slaves were discarded or killed because they were unfit to perform on the plantation. That fear still carry on to today’s world, where disability in the black community is taboo (especially mental disabilities). We are either viewed as angels or devils, not just mere humans who want to explore the world and enjoy life just like abled-bodied and neurotypical people. Also add these following things to the mix of things that plague our community: lack of disability awareness/acceptance, underfunded public special education programs, lack of adequate services for the disability community, extreme unemployment/underemployment, and a scarce amount of black disabled role models.

#BlackDisabledLivesMatter is personal to me because I am that black and disabled person who is under immense pressure and constant attack from the mainstream society, as well as black (abled-bodied and neurotypical) community. Despite pursuing a Ph.D degree, holding two post-high school degrees, and a certificate in web design and development, I only managed to work in part-time jobs, summer jobs, and internships. I haven’t had full-time work yet, though I am more than capable of doing work and I have the talents to back it up (i.e., writing, research, media, a little bit of web design, photography, basic graphic design, public speaking).

In fact I get scrutinized a lot for “picky eating,” seeing the world in various perspectives, my passion for geekery, preferred choice to be alone, and sensitivity to certain sounds and temperatures. I used to get bullied throughout my childhood. I have difficulty keeping friends and romantic relationships because of social miscues. I have been stopped by the police before because I “looked suspicious” walking on campus at night, was falsely accused of a crime I didn’t commit, got robbed at gunpoint, and almost got shot for getting hit by a car after I got spooked by a cyclist riding through the bushes (the white guy who pulled the gun on me thought I was jumping in front of the car for the hell of it, but the cyclist saved me by telling him what really happened).

Eeyup! That’s a lot for a black disabled person like myself to go through in a lifetime; I’m just 28 going on 29 in October. And I’m not the only one: There are too many similar stories in which black disabled people have been harmed, exploited, and shunned by their ethnic community, religious centers, schools, family, peers, the state, law enforcement, caregivers, etc.

In a nutshell, #BlackDisabledLivesMatter because we are the black sheep that are aching to be heard by ANYONE, especially the mainstream media. Our voices have been muted for so long, but thanks to social media and the rise of the black disability community, we are slowly but surely trying to speak out. We want to be heard, we want respect, and we want equity!

So the next time you want to use #AllDisabledLivesMatter in conjunction with #BlackDisabledLivesMatter, double check to make sure you’re really fighting to make sure that all disabled lives matter, including black disabled lives. Get to know various facets of the disability community; learn about the plights that black disability community faces daily; do something about the attack on black disabled lives and lives of disabled POCs in general. Otherwise, you will be viewed as just reactionary or racist. Your activism will continue to be out of touch and you will miss the intersections of disability and race, class, gender identity, etc., if you just throw #AllDisabledLivesMatter around.

Sunday, July 24, 2016

The Shooting of Arnaldo Rios's Caregiver Charles Kinsey: What You Need to Know

Shannon Des Roches Rosa
Senior Editor

Behaviorist Charles Kinsey trying to comply with police
while protecting and reassuring his autistic charge Arnaldo Rios

photo via The Advocate
[image: Black man lying on his back with his hands in the air,
in the middle of the street, next to a seated Latino man.]
Here is what we are hearing right now, in the wake of Black autistic caregiver Charles Kinsey being shot by a North Miami police officer while trying to protect and support Arnaldo Rios, a Latino autistic man who had wandered from the group home where Kinsey worked:

Black people are not safe. Latino people are not safe. People of color are not safe. Autistic people are not safe. People with Disabilities are not safe. And heaven help you if you fall into more than one of those categories, or are also LGBTQ+ or otherwise a member of a marginalized group.

What can we do? What can you do? 

You can read. And listen. And learn, and then share what you've learned with people who have the ability to change things. To that end, we're compiling the thoughts, writings, and actions of people who share the experiences of Mr. Kinsey and Mr. Rios, Mr. Rios's family members, and other community activists -- including solutions for law enforcement officials who support autistic and disabled people in crisis.

Charles Kinsey was trying to be entirely compliant with the police, while also trying to calm and support Arnaldo. That he got shot anyway is an indication, as per his statements in The Advocate, that Black men don't have the option to de-escalate.:

“I was really worried, more worried about [Arnaldo] than myself,” Kinsey told the station. “I’m looking at, as long as I got my hands up, they’re not gonna shoot me. This is what I’m thinking. They’re not gonna shoot me. Wow, was I wrong.”
Morénike Onaiwu, Black autistic activist and mother of autistic children, writes about the collective reaction to Mr. Kinsey being injured rather than killed, and Mr. Rios not being shot:
It sickens me that many of us are relieved, even "grateful" in this situation. Rinaldo*, a brown autistic individual who was unable to comply with the shouted demands of the rude officer, could easily be dead right now; his autistic mannerisms and movements could have easily been misinterpreted as a threat - just as his toy truck was mistaken for a "gun." (Because you know how much trucks resemble guns.) As a mother of black children with disabilities, including processing delays, who can't always comprehend nor comply with instructions - especially in the midst of a chaotic situation and when someone is shouting loudly at you - I am frightened as well as angry. Rinaldo could easily, easily be a hashtag right now.
It turns out it was only luck that kept Mr. Rios from being shot, and, as his sister Miriam Rivers reports on a public Facebook status, that doesn't means he wasn't traumatized by the police encounter:
"All I hear from the news is how my brother was holding a gun; He wasn't. How my brother was blocking traffic; He wasn't. How my brother ran away from the group home; he didn't. How my brother was suicidal; how ignorant! He wasn't.

"He was walking with his caregiver. With his toy truck.

"Now I hear the police saying how they wanted to shoot my brother and not Mr. Charles. As if THAT makes the whole situation better. And if that was the case, how come they handcuffed Mr. Charles while he was bleeding from the bullet wound? Also handcuffed my brother. Leaving my brother inside the police car for 4 hours despite all the staff members from the group home informing the police that Arnaldo was Autistic. Instead they just read the "rights" to him.

"Now Arnaldo is in Aventura Hospital in the Behavioral Unit. He keeps having frequent episodes of screaming, intense fear and flailing while still asleep. Asking for Charles, crying."
(At this point, we all need to pause, and those of us who aren't autistic need to consider how our autistic community members feel when they are traumatized, scared, and then removed from all familiar supports and reliable people. And it is making my soul ache to think about how my own autistic son would react in Arnaldo's place.)

How are our community members responding to this incident? I don't agree with parent Marie Myung-Ok Lee about everything, particularly when it comes to not revealing intimate details about our sons, but I identify wholeheartedly with her heartbreak and fear in the wake of Mr. Kinsey's shooting:
"My heart has been sinking at each incident of black men and women dying at the hands of police, and this latest video has combined a national nightmare of an epidemic of unaccounted-for black deaths with my personal one as a parent of a disabled soon-to-be adult. I can hear in Charles Kinsey’s voice how worried he is about keeping Rinaldo* safe. So why did the police see something so different?"
A'Driane Nieves is the mother of "Black. Latino. Boys. Wild, dynamic, hilarious, clever, wicked smart, Black and Brown boys." Two of her boys are autistic, one has ADHD. A'Driane writes,
"[Going to IHOP with my family] might not seem like anything significant, and perhaps if the current climate around race and policing in this country were different, it wouldn't be. Yet on a morning when I've read the news about behavior therapist Charles Kinsey being shot by Miami police while helping a Latino autistic youth who was playing with a toy truck, it is -- at least for me. It's significant because the fear that grips me when I read that a man with his hands up while laying on the ground was shot anyway tells me to just stay home. It triggers my anxiety and panic and attempts to sell me the lie that just staying inside the house or telling my boys they can live in our home forever, where it's safe, will keep us alive ... and some days I just allow myself to believe it and exist in that delusion to safeguard my mental health until I feel bearing the weight of reality is doable again. It's a gravity well there is no climbing out of, only existing in, and being at the mercy of, while also fighting to thrive in spite of dwelling there."
I asked my own autistic son's longtime home aide, Victor Cabrera -- a kind, dapper Mexican man with a linebacker's build -- for his thoughts on the incident. He told me,
"It baffles me to know that the people we trust to protect us are still not fully prepared to handle every situation presented in front of them accordingly. This is just one of many incidents where law enforcement isn't properly trained to deal with the special needs community.  I myself have encountered glances and awkward looks while out in the community with my client by law enforcement not knowing why he made a vocal noise which is a way of communicating. It's always in the back of my mind that one day a bystander or an officer might act upon this not knowing why my client is doing this.

"To learn of this shooting incident of a man being shot while being out with his client does hit close to home. To hear that the police officer was actually aiming for his client makes me fear for my clients while being while out in the community. I've been doing this for fourteen years, and it saddens me to know that there is still little progress with regard to people of authority, specifically those with lethal weapons readily accessible, that fear due to lack of knowledge or understanding towards certain populations are still reactive versus proactive."

We were relieved to see that The Autistic Self-Advocacy Network issued a formal statement on the incident, and agree that:
"Racial justice advocates and communities of color have long called for better police accountability and urged reforms in crisis response practices. We urge the disability community to bring the full weight of our support behind them. The time to act is long past."
And we need to reiterate that the shape of that accountability and reform must take into account the actual needs of autistic people and people with disabilities, if it is to be successful. As Kerima Çevik writes at The Autism Wars,
"You can't train away racism or ableism. Understand that. What we need to look for are paths to reduce creating situations where these encounters take place meaning exploring solutions like a crisis team response group of medical, mental health, and autism professionals which would only include law enforcement (armed with a taser NOT a gun) if abuse of the disabled person or the threat of harm is truly imminent. All strategies need to be inclusive of autistic disability rights activists because they are both directly impacted by whatever training strategies, policies, or actions happen in their name, and they know what training and delivery methods will work best for their peers."
We also urge law enforcement officials to observe the approach of officer Tim Purdy, who was dispatched to support a young Black autistic man who had left his campus, had a reported history of violence, and was possibly suicidal: Officer Purdy took the time to build a connection with the young man, sat on the ground with him on his level, and treated him like a human being. That last part is essential if we are to make progress in this area.

We sincerely hope Arnaldo Rios gets to leave the hospital soon, and that Charles Kinsey makes a full recovery. Arnaldo's mother Gladys Soto has asked publicly that the community pray for her son, as the family needs lots of strength. We will be certainly keeping Arnaldo, the Rios Soto family and Charles Kinsey in our thoughts.


*Early news reports identified Arnaldo Rios as "Rinaldo."

Friday, July 22, 2016

Life, Animated: The TPGA Film Review

Shannon Des Roches Rosa

We don't have enough good movies about autism. This is a fact. And by "good" I don't mean "struggles pluckily and inspires non-disabled people to be grateful for their own lives" or "overcomes their disabilities thereby inspiring non-disabled people to try harder in their own lives." I mean we don't have enough honest, rich, complicated stories of autistic people living their own lives on their own terms.

But now, we have Life, Animated, which opens in theaters throughout the U.S. and Canada over the next two months. It's not a perfect movie, but it is a movie that centers Owen Suskind, its autistic protagonist, to a degree rarely shown in autism stories. Centers him not only in his own documentary, but amidst his family's love and support, and during his journey towards independence.

Owen Suskind. Photo courtesy The Orchard
[image: a smiling white man with short dark curly hair,
seated on a bed in a bedroom.]
Like I said, it's not perfect. Many of the ways Owen's parents describe his autism diagnosis, and the predictions and pronouncements of specialists during that time, are very negative and based on misinformation. But I had the opportunity to interview Owen's parents Ron and Cornelia before the Life, Animated book on which the film is based came out in 2014, and they told me that their descriptions are what their experience was at the time, not what they think now. I also think it is clear in the film, from how Cornelia and Ron talk about the advice autism experts gave them at the time, that the '90s were a very dark period for autistic people and their families in terms of actually useful services, understanding, and supports.

What I love most about Life, Animated, frankly, is charming and delightful Owen himself. I also am grateful for his willingness to share his story, including the soul-deadening horror of being bullied at school when you are a person who takes teasing and taunts literally, the pain of his girlfriend breaking up with him, and the exhilaration of moving into his own apartment and finding a job. And, as the mother of a teenage boy who listens to The Little Mermaid song "Under the Sea" every day, I can't help but appreciate his devotion to and reliance on Disney films as scaffolding for both understanding and connecting with a world whose rules are not autistic-friendly.

For my specific thoughts on the movie (and spoilers of course), you can read through my live-tweeted viewing (below). But, yes, you should see Life, Animated.