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Fear at the Intersection of Race and Autism – Part 2

Autistic people of colorBy Nancy Hokkanen

Read part 1 here.

Many thorny sociological threads are interwoven within the chilling July 18 police shooting of Florida behavior therapist Charles Kinsey in front of his autistic group home patient, Arnaldo Rios-Soto:

  • A calm, unarmed black professional man lying hands up, on the ground, on his back… who still was shot by a police officer.
  • An agitated young man with autism who’d run away from his care center, who police later said was the original target of the shooting.
  • A young police officer with SWAT training who’d received misinformation from 911 dispatch, whose two other shots missed their marks.


Those three men’s lives intersected against a tense societal backdrop of increasing gun violence reported in international media. Three men whose parents were relieved that their son was not killed.

The thoughts of North Miami police officer Jonathan Aledda before he fired his gun may never be fully understood. One key factor deserves examination: The citizen eyewitnesses who’d called 9/11 had misinterpreted autistic behaviors. That mistake caused lifelong trauma for all three men, and nearly resulted in the death of either or both innocent citizens.

The general public’s inability to recognize behaviors common in the growing autism community indicates that autism awareness efforts need a change.

Question: Who’s been misinforming or under-informing the public about the realities of autism?

Let’s start with mainstream media reporting, which skews toward upbeat stories of quirky kids showcasing some special talent. Depending on legislative focus, people with severe autism might be portrayed as drains on tax-funded services. Or those with autism lead the nightly news when they’ve gone missing, were found dead, or perpetrated a crime such as a fatal shooting.

Another problem is autism advocacy groups with financial links to organizations with questionable motives. Spectrum News, funded by the Simons Foundation, writes about children who mysteriously grow out of autism. Another group, Autism Speaks, lists early signs of autism but their byzantine website takes you down one rabbit hole of generalizations after another.

Government agencies have been disgracefully impotent regarding public education on autism behaviors and the challenges faced by people with autism, their families and caregivers. To many frustrated autism parents, the Interagency Autism Coordinating Committee epitomizes government inaction and waste. “I cannot keep coming here and talking about the same issue time after time after time,” said Dr. Albert Enayati at the IACC’s most recent meeting.

Repeated inaccurate media reporting on autism psychologically conditions the rest of the world to believe a whitewashed narrative. It’s easy for neurotypicals to ignore the autism that’s hidden away from public view – the countless children and adults sick and suffering with immune and gastrointestinal damage, acting out physically, with families forced to avoid public venues and instead live as if under house arrest. Worse, seeing that Florida video of what almost became a street execution sadly provides another reason to hide in one’s home.

Autism misinformation contributes to the cultural devaluation of persons with autism, especially as diagnoses skyrocket. Government human service funding decreases as fewer employable adults support Social Security, waivered services and Medicare for the disabled.

Over the centuries humankind has continually created reasons to persecute subcultures it finds inconvenient. On July 26 a 26-year-old Japanese man stabbed 19 people to death and injured 26 at a disability center near Tokyo where he’d once worked. According to officials, he wanted to “get rid of the disabled from this world.” (Ironically the disability of mental illness may have led to the man’s homicidal actions.)

The appalling headline, “North Miami Officer Was Aiming At Man With Autism, Union Chief Says,” implies that the disabled man was the greater of two evils. Thus both the black Miami shooting victim and his disabled patient found themselves at the crossroads of oppression:

  • People who are black, primarily male, historically viewed as threats to society;
  • People with autism, primarily male, increasingly viewed as threats to society.

Not just at the crossroads, but in the crosshairs.

* * *

The shared experiences of oppression can bind differing cultures. In 1930 the American sociologist and author W.E.B. Du Bois asked scientist Albert Einstein to contribute an essay on “the evil of race prejudice” for The Crisis magazine. Du Bois translated that essay and wrote its introduction, saying: “Professor Einstein is not a mere mathematical mind. He is a living being, sympathetic with all human advance… and he hates race prejudice because as a Jew he knows what it is.”

“Intersectionality” is a term coined in a 1989 paper by Kimberlé Crenshaw, a U.S. legal scholar and critical theorist, to describe how feminist groups of white women and anti-racist movements of black men were marginalizing black women. The definition of intersectionality has expanded over the years to encompass combinations of not only race and gender, but also sexual orientation, religion, social class, country of origin and disability.

Some have criticized the term “intersectionality,” claiming that emphasizing restrictive definitions of subpopulations creates division instead of unity. However, Crenshaw says, “Intersectionality is an analytic sensibility, a way of thinking about identity and its relationship to power, to examine the structures of power that so successfully resist change.”

Minority advocates for social change also have expanded the definition of intersectionality from primarily dually-impacted individuals (e.g. a person of color with autism) to a multi-group concept – that is, identifying oppressions shared by a variety of minorities. Combining these groups’ communications networks provides mutual support and greater strength in numbers for promoting initiatives on cultural understanding and equal inclusion in society.

Using intersectionality as a tool for social change requires empathy and reciprocation. Collaborating with other cultures means questioning entrenched assumptions and rooting out stereotypes. And one must not take advantage of other long-standing communities’ hard work in order to leverage one’s own agenda to inequitable prominence.

* * *

A new minority has evolved out of our scientific age:
the medical minority of vaccine injury victims.

 

Since the Internet was created, people affected by vaccine injury have been networking with each and creating activist communities. This diverse, growing group of victims and families is the inevitable outgrowth of faulty vaccine research and ethical lapses by the U.S. Centers for Disease Control, vaccine manufacturers, and medical trade unions.

Vaccine injury is a demoralizing shock for any family, which changes lives… and sometimes ends them. And it’s quite a civil rights awakening for affluent white families unused to poor quality medical care, government denials, closed educational doors, public ostracizing, and financial hardship – welcome to “their” world.

This as-yet-nameless medical minority is co-producing fruitful cross-cultural collaborations to promote vaccine injury awareness and reform. In October 2015 a rally was held outside CDC headquarters in Atlanta, with Nation of Islam members among vaccine safety and health freedom organizations protesting the government’s destruction of data linking the MMR vaccine to autism in African-American boys. Another rally outside the CDC was held in April 2016 “to protest the fraud, manipulation and cover-up” by vaccine policymakers, which mainstream media have failed to publicize.

Educating the rest of the planet to recognize autistic behaviors and to help prevent vaccine injuries is a tall order, but social media have proved instrumental. However many advocates have reported censorship; on Facebook, algorithms from pharma-friendly content editors identify and block posts critical of vaccines. Twitter wars pit vaccine injury victims’ supporters against high-volume sites of industry-linked celebrities. A June 2014 article described how R&D group Pacific Social was “developing bots that will detect misinformation posted to social media… the belief that vaccines cause autism.”

Twitter bots only get 128 characters, whereas a picture gets a thousand “Like’s”… and retweets. Furthermore, autism parents are posting videos of their suffering children’s stimming, tics and perseverating, or sobbing and writhing in pain due to chronic gastrointestinal dysfunction. Some viewers find the content too distressing, while others criticize these slices of life as degrading for the subject and possibly nonconsensual.

The Kinsey shooting spotlights the intersection of two public safety paradoxes, with similar narrative scripts:

  • Two government-run entities – policing and vaccines – intended to improve the quality of life instead having the opposite effect on a subset of the population;
  • After the incident, government representatives scrambling to put the best possible spin on the sensitive powder-keg situation;
  • The so-called “vocal minority” protesting, demanding ethical agency policy change to stop such tragedies from happening to others.

Shootings by police, and of police, are profoundly shocking. Videos of vaccine injury victims’ suffering are profoundly shocking. But as both scenarios are broadcast repeatedly in mainstream and social media, their sheer volume risks setting off information overload, compassion fatigue and desensitization. Still, that high volume of human misery also increases the odds that everyone is affected personally in some way, giving the issue far more compelling empathetic resonance.

This tumultuous election year has brought together a wide variety of subcultures working to change local and national policy on social justice issues. Said historian Robin D. G. Kelley, “The marginal and excluded have done the most to make democracy work in America.”

The inexcusable Kinsey shooting deserves to be sandblasted into the national psyche, its moral message carved in sharp relief: No one deserves to be a random shooting target. No one deserves to be written off as collateral damage in the war on crime or disease. Together we can hold the powers that be accountable.

###

Nancy Hokkanen is Contributing Editor to Age of Autism.

Comments

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annie

It is shocking how ill equipped, and stereotypically biased, the people we employ to "protect and serve" are, and by "ill equipped" I don't mean riot gear, I mean training and maturity.

http://www.democracynow.org/2016/8/11/racist_illegal_justice_department_slams_baltimore

angus files

Thanks Nancy I don't know how often cops get shot at and if America is as trigger happy as it the media says it is(I don't think so) .I cant imagine the frame of mind of the shooter possibly he had trauma before and seen his best mate shot or something and needed to balance the psychological books,but I still cant see any slight indication necessitating the need to pull the trigger. I am no expert but thanks for writing in your usual eloquent fashion a subject so devoid of any human compassion.

MMR RIP

Kendra

Many of us that have been around a long time in this battle (yes I'm old), and our children have or are aging into adulthood are learning that the battles are never over and we have a lot of work to do if we are going to help our now adult children survive in this world, and us keep our sanity. The new issues I am learning are mind boggling, and they are not just important issues to address, they are life and death and tomorrow would not be too soon.
The police issue is a huge one and part of the problem is the lack of desire on many departments to give a darn. I have a long list of horror stories of police interaction with Autism and we know many parents have tried to change things. Dennis was going to be in Portland once and for 6 months I tried to get local departments to go, or at least take a look at it and did not even get the courtesy of a reply. Same with EMT and fire departments.
A friend of mine here in Oregon went to her local department and a Sergeant told her they couldn't consider that because someone might just "pretend" they have autism. My thought was, so what, what are you afraid you might "accidentally" treat someone like a human being.
Here in Oregon we have had some of the worst incidents also. A 12 year old tazed by City police in Portland. A 9 year old girl tazed by State Police near Ashland. Several incidents across the U.S. have resulted in the deaths of young adults with Autism, especially when the boxes for Autism and being Black are both checked off.
This situation has caused me to reconsider options for my child and her future. Even if she could get a driver's license I will not allow it until the laws are changed to be able to mark "communication disorder" on her driver's license. It only takes one misunderstanding to threaten our children's safety. I am starting to write and submit legislative ideas to force state legislature's hands to address the epidemic they have been ignoring now for 2 decades. It simply can no longer be ignored.
The first two are 1) getting the driver's license/State I.D. designation for communication disorder or Autism and 2) Changing the legal approach to extended guardianship of our adult children. With 1 in 50 now aging into adulthood, the fact is many will be left unprotected because the process is daunting and a financial hardship for too many. In many states it can cost several thousand dollars and must be re-done every year. As if these parents haven't been screwed over enough, this is just another opportunity to provide little while emptying their pockets for someone elses enrichment.

Donna L.

Nancy, this is so very well written. You tackled a difficult subject with true grace. Well done.

And Adriana, that's exactly what I was thinking. Which (sadly) means we will probably see an awful lot more of these incidents as more and more kids age out and move into the community. The future for our kids is horrifying.

Adriana

Thank you for writing this, Nancy, and for giving these complex issues more shape. The vaccine injury movement lives and dies by its intersectionality.

Has anyone considered whether the neighbor who called 911 did, in fact, know what they were looking at, knew the incident was a harmless exchange between a disabled resident and therapist, but out of objections to having a group home in their neighborhood, made the call as a form of harassment? A Google search for "neighbors protest group home" brings up a depressingly long list of news stories.

nhokkanen

From Miriam Janice Rivers, sister of Arnaldo Rios-Soto,
posted on Facebook 7-22-16:
"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. He wasn't eating and he was anxious. Being easily startled or frightened. How can we explain to him what happened? He doesn't have the capacity to comprehend the gravity of the situation. He has no sense of what danger is! But he understands someone got hurt. He understands Mr. Charles got hurt. Why? Because he kept saying to my mom: "Blood oh no Charles, blood!" In a desperate atempt to explain what he went through. What he witnessed.
"In the end I just hope Mr. Charles recovers quickly and stays safe. Him and his family have gone through enough as well. Praying for everything to be settled appropriately.
"I also hope Arnaldo heals and forgets what happened quickly. And that my mother can actually have some peace of mind. Even though she is still mortified, perplexed, angry and appalled.
"I'm just tired.
"But this isn't over."
https://www.facebook.com/M.J.Gypsy?fref=nf&pnref=story

Tim Kasemodel

Nancy,

Thanks so much for putting in writing what I have been thinking the past few weeks.

It is interesting when I talk about my son to others. It seems to take a while before they "desensitize" themselves, so that the shock of what I tell them can evolve into genuine caring.

What I mean is that my son's behaviors are so far from what people have been told, or have experienced themselves that I feel they can not find a way to internalize it enough to even be empathetic. They tell me they are sorry, that it is sad, that it "must be so hard". I think they simply are not able to see themselves being able to handle the physical and emotional requirements of parenting a a child with severe autism.

My closest friends do understand, but it is because they have listened enough to my stories to know that what helps me the most is to simply "listen".

I wish that the rest of the world would start listening.

Benedetta

Well, it looks like to me that the media has gone silent on it this shooting - really quick. Not the usual going over and over and over again the incidence, or covering some protest, were they are holding up their hands with a toy truck in them has been shown. Strange.

Grace Green

Thank you, Nancy Hokkanen, for this powerful essay. I have long been advocating for different communities of minorities to come together in our struggle against discrimination by society, my own particular group being adults with Aspergers who believe they are vaccine injured.

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