Expanding On David Perry's 'Bad Disability Journalism: Autism as 'Genetic Devil''

Fred Dickey uses the smell of Bleach as subliminal messaging throughout
his train wreck of an article on autism. Pictured are Clorox and a bucket
from their #BleachItAway campaign 

I need to make some points about the heinous article professor David Perry discusses in  one of his blog posts. I chose to share it on the Autism Wars community page on Facebook. The discussion on the post is beginning to veer from the point of professor Perry's critique and my original reason for sharing it. So let me break this down from my personal point of view.

The goal of  journalist Fred Dickey is calculated and apparent. He’s written in this style (evil autie trope) nearly 10 years after numerous protests organized by autistic disability rights activists shut down everything from the infamous “ransom notes” campaign launched by New York University's Child Study Center (NYU CSC) to a series of horrific PSAs from misguided organizations like Autism Speaks. The media knows better than to present this dangerous view of autism by now. So we must ask ourselves why Fred Dickey wrote about autism this way at this moment.

Less than one year after the publication of two comprehensive histories of autism, the use of 1950's tropes to characterize disability could be in part Mr. Dickey not researching autism as a disability but rather imposing his personal ableism regarding autistic people into his writing. Mr. Dickey's goal appears to have been the deliberate sensationalization of a family crisis situation involving a vulnerable autistic 10-year-old and his overwhelmed mother. To the comments I've read on making this a teachable moment for Mr. Dickey, I sincerely doubt he is open to teaching nor is that a viable use of time and energy.  He stands to benefit from any sort of written attention  in terms of driving  traffic to his article and the chance to write more on this topic and do further damage. My opinion is such efforts are a zero sum game.

This is an election year that includes great pushes to pass some frankly terrifying attempts at mental health reform by regressing to draconian systems of care, so Dickey's attempt at painting the worst portrait possible may also have a hidden agenda supporting the case for funding the return of the mental institution model that locks disabled community members away from society to be victimized behind prison-like conditions.

Mr. Dickey may have also wanted to anger enough people to force a reaction, and by that reaction, whether  well-intentioned parents trying to educate him in autism awareness or angry activists calling him out on this atrocious piece of work, would serve to make this single article more prominent and more likely to facilitate Dickey being called upon to pen more controversial articles. Mr. Dickey may be using the Trump “strategy” of using shock value to gain attention. Unfortunately, his victim here is Rene Camacho, an autistic 10-year-old. No one should be allowed to do this to a child, and no parent should allow it.

The most effective protest that can be given in reaction to Dickey's sorry excuse for an article is to ignore posting any reaction to it or Fred Dickey and reach out to Rene Camacho and his mother instead since Dickey used them as props in his fake American horror story. Caring about the autistic victim and his clueless family is both the right thing to do and  the moral obligation of the entire community. Reaching out and offering to educate and help the mother, son, and siblings could save their lives.

But it is also important to point out inconsistencies in this story. This kind of deconstruction of destructive content demonizing disabled family members in crisis can go a long way to correct the way other vulnerable autism families view them and reboot the entire train wreck into positive support for the autistic people in crisis being victimized by such rubbish. Here are a few things that caught my attention.

1. How does a woman so overwhelmed she cannot keep furniture or cleaning fluids safe in the house and needing to constantly disinfect because of her son's alleged behavior, have the energy to establish and run a nonprofit that repairs the property damage done by autistic kids in homes?

2. If this Rene's behavior is as described in the article, why is there no mention of his school life and how these behavioral challenges impact it? This would indicate that Mr. Dickey couldn’t find any facts to embellish there, making it conspicuous by its absence. If Rene does well in a school setting then his problems are related to his home environment.

3. The mother in this article claims to have repeatedly discussed her son’s inappropriate use of cloth towels in the bathroom with him, but claims because of her son’s autism, she has now chosen to not have towels in the bathrooms. Two interesting things not intended by Fred Dickey to come out here do once we are able to move past our justifiable outrage at the disclosure of the worst moments and private challenges of a disabled child.

     a. Because she discusses having repeatedly told Rene what the appropriate use of bathroom towels are, we can conclude that Rene has verbal speech, and sadly, his mother and whoever continues the therapies mentioned in the article have not tested Rene for an auditory processing disorder. They have simply assumed he is being noncompliant because they presume his incompetence.

     b. It never dawns on Ms. Camacho that her son Rene may be trying to tell her that something about the toilet paper she’s supplying for example that it is causing him discomfort, and she needs to change her brand of toilet paper. She probably has never asked him if he is having an allergic or sensory reaction to the toilet paper in the bathroom. Because her fixes are based on the presumption of Rene’s incompetence, she sees her own son as behaviorally static, and she will never accept any answer to the question of why a particular behavior is happening in the context of agency. The fact that Rene might be trying to solve a problem by behaving in what those around him view as a maladaptive way requires the presumption of his competence and respect of his agency in his own life.

4. Dickey describes situations like the replacement of a broken window glass with plexiglass, the uprooting of a tree in the context of the family not being able to enjoy their own preferred object and activities because of the autistic member. He does not discuss the changes needed to adapt Rene’s home to make it accessible an accommodate his disability. Had the changes in the house been approached from the standpoint of ADA accommodation, it  would have given a qualitative difference to the article’s narrative.

5. Rene’s sisters have not been taught to engage him as a sibling. They have been taught to blame every unhappiness on their brother including the absence of their father in their lives. His activities to seek sensory input are viewed as behavioral problems rather than attempts to gain accurate input from an environment he is clearly having challenges navigating . No one is educating his sisters about his disability except to scapegoat and victim blame. He is seen as destructive rather than a disabled young man trying to gain vestibular control in order to focus. Someone needs to reach out to these people and educate the lot of them. This is happening in San Diego, CA. I hope this can be made to happen.

6. Ms. Camacho’s husband was in the U.S. Navy, where the nature of duty assignments involves long absences from family and the military spouse is expected to carry on alone. Protracted duty assignments are statistically the cause of a large rate of military marriages ending in divorce, particularly in destabilizing moments for the military member, such as transitioning out of active duty military life, which was mentioned in the article. So the ending of the marriage here being entirely laid on the shoulders of an autistic ten-year-old is overly simplistic and dangerous, even if it gives Rene's mother an excuse beyond her control for the failure of the relationship.

7. The most important trope in the article, Dickey’s use of Ms. Camacho’s anecdote of her father wishing to call a priest to exorcise the autism from his grandson should be a red flag to everyone reading this. It harkens to incidents like the death of Torrance Cantrell who suffered and died at age 8 because his mother's church was trying to expel the demon autism from him. Demonizing, othering, and reaching for unhealthy solutions to a young man whose had no outlet to organize sensory input, navigate his home environment, and interact without ableism with his siblings and parents is not going to end well. That is justification for outrage against Dickey. But he is truly unimportant. Those he used to gain a moment's attention in a content laden Internet are the people that matter.

References/Resources
-----------------------------
Bad Disability Journalism: Autism as 'Genetic Devil' by David Perry
http://www.thismess.net/2016/08/bad-disability-journalism-autism-as.html 
Disability Community Condemns Autism Speaks
http://autisticadvocacy.org/2009/10/disability-community-condemns-autism-speaks/  
The Ransom Notes Affair: When Neurodiversity Came of Age
http://dsq-sds.org/article/view/1065/1254
Exorcising 'Genetic Devil' Autism: The Murder of Torrance Cantrell:
http://theautismwars.blogspot.com/2013/06/the-murder-of-torrance-cantrell-towards.html

A Mouse that Roars - Standing in Defiance of Autism Speaks

Trauma Trigger Warning for language and ableism

On November 13, 2013, Autism Speaks will unleash the full force of its corporate lobbying budget and political action money on Washington D.C.. Autism Speaks is bombarding the District of Columbia with advertising, showering universities with research funding and overwhelming the locals with overwrought, ableist, tragedy rhetoric in order to fulfill their corporate agenda. Anyone in their way will be crushed underfoot. Any person objecting to or criticizing how they do business will be legally dealt with. Autism Speaks has repeatedly made that point, and it was again made clear when they rescinded a job offer to the mother of an autistic teen who requested reasonable accommodation to care for him during her work day (click here for details on that incident).

Tomorrow, autistic disability rights activist Lydia Brown will face down this bombastic display of corporate wealth and power and try to be heard. She will stand in defiance of Autism Speaks' three day "national policy summit" that excludes the voices of autistic adults who advocate for their peers. I am the mother of one of those "children who will need help all their lives". I am an autism mother. I stand with Lydia Brown in defiance of Autism Speaks. 

Yes, gentle people. I am asking that all of you stand with us against this frightening force lumbering forward with no interest in our families or in autistic people who are growing up and aging. Autism Speaks is inhumanely imposing their idea of what our community needs and attempting to mandate everything from how my son will be housed to funding research that has no real benefit to my son or his peers. Note that no research funding is going to technology that provides more effective augmentative alternative communication devices, when the primary challenge to autistic individuals throughout their lifespan is communication. Assistive technology solutions for autonomous living are not funded by Autism Speaks research money. Mrs. Suzanne Wright refers to autistics as "the autism crisis", dehumanizing them in a most ableist manner. She goes on to equate my son and his peers, who are still very much here as being "missing", a clear reference to the highly offensive "Ransom Notes" campaign launched by New York University discussedhere. Her exact statement in this excerpt from her blog post, entitled Autism Speaks to Washington - A Call for Actionis

"This week is the week America will fully wake up to the autism crisis

If three million children in America one day went missing – what would we as a country do?

If three million children in America one morning fell gravely ill – what would we as a country do?

We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.

We’d leave no stone unturned.

Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing."

Suzanne Wright

Her entire disturbing post can be read here.

For all those saying that Autism Speaks is understanding neurodiversity, the message is clear that at Autism Speaks, tragedy, ableism, and fear tactics are still the order of the day. My son's challenges are enough without Autism Speaks using them to push their own agenda in his name without his voice in his own affairs. He's not lost. Only Autism Speaks has lost touch with the very autistic people it professes to represent. Autism Speaks has no autistic governing representation of any significance on their board of directors. Please take the time to read Ms. Brown's latest post here.  Read about how autistic adults were treated by people who were participating in the juggernaut Autism Speaks fundraising event machine here when these young autistic activists exercised their right to protest the event. Autistic adults are our children, grown up. Do we want our children to be voiceless and passive, accepting what people who do not understand or care about them decide about their lives? Or do we want to know that they are standing together to defend their own right to speak for themselves and control as much of their own lives as they can?

Autism Speaks promotes ABA thoughtlessly, ignoring documented harmful outcomes like learned helplessness that must be dealt with years after this intervention ends. Parents and autistics of all ages who are capable of self advocacy should be given the right to choose what accommodations, supports, services and help they need. What the wealthy grandparents of an autistic child deem worked for him must not therefore be mandated for all of us. Autism families and autistic adults who don't agree with the way Autism Speaks approaches autism should not be simply subjected to their dictated national policy. No organization has the right to remove my son's right to be heard and mandate whether  and how my son is included in his school and his community.  I will not let Autism Speaks silence my son as he grows up. I will not allow Autism Speaks to usurp my voice as a parent and mandate what it thinks my son needs. Autism Speaks does not have that right.

Autism Speaks has no right to perpetuate policies that leave my son at the mercy of strangers in isolation from his own community, chemically lobotomized because their organization is uncomfortable with his apparent differences and degree of impairment. I look different from people who are white. My nose is wider. I will not narrow it. My skin is darker. I will not lighten it. I am visibly different from Mrs. Suzanne Wright. Should she then speak for what I need because she is in a position to bestow large quantities of money on those who make decisions? I thought this was the United States of America. I can speak for myself and adults with my son's degree of impairment can speak for him, until he can clearly communicate his needs himself. Only someone who knows what road my son will travel as an adult can know what he needs. Sorry that is not someone who is not autistic.

I will stand with Lydia Brown and disability and human rights activists in defiance of the mega nonprofit Autism Speaks.  For those of you who say Autism Speaks has good intentions, I respond that the road to a hellish future for my son and too many of his peers is being paved with their good intentions. We are at the crossroads of a very dangerous turn in the road of nonprofit public policy lobbying. Will this organization dictate the lives of your children? Is the future that you see for your grown son or daughter? A future of poverty and dependence on people paid to care for them after you are gone? Look further. We have the technology to vastly improve the quality of life for my son and his peers. Isn't it sad that the push for assistive technology development for wounded warriors is encouraged but that drive does not exist for our community? We must take a breath, step away from sadness and ask each day how our children will live as independent adults. 

The goal is autonomy. I want the whole American Dream for my son. I want lifetime educational access so he can continue learning until he reaches his highest potential. I want supported employment beyond him pushing a shopping cart. I want him to live on his own in clean, safe, housing beyond poverty. I want him to be an active part of his community. No revamped institutional residential housing is going to be accepted by me for my son. I have seen segregation. That didn't really work out for us people of color at all. We decided that was enough of that. How is that supposed to be ok for my disabled son?

I will be a mouse who roars. Even if I cannot be there in person, I want to be there in spirit, and so today I roar for Lydia Brown, and all those who will stand with her. A friend has a blog with a title that describes the unstoppable force headed Autism Speaks' way tomorrow.  The title is "Small But Kind of Mighty".

Lend your voices to ours, online and in person. Roar for your progeny. Demand more.

Here is my thank you to every brave soul who stands and speaks for my son. In solidarity.

Nothing About My Son Without HIm.

The Great Shain Neumeier, Esq.

Remember the Autism Wars post Mother's Day? I mentioned people who everyone should know. One of them is Shain Neumeier, an eloquent attorney, writer, and speaker on topics of autism and social justice. Shain is one of my personal heros. So here's a brief introduction to Shain, with the hope that more people will get to know more about this outstanding attorney and champion of social justice.

Shain Neumeier giving a presentation on restraint, seclusion
and aversives in schools and programs for Education Law.
Rocking the T-shirt version of the white polo shirt worn by my son,
and designed by autistic disability rights activist Lydia Brown. 

Shain Neumeier is a disabled attorney living in Portland, Oregon. Shain has researched issues involving institutional abuse of youth and disabled people for a number of years and currently works with the law firm of O'Donnell, Clark & Crew in seeking damages from a notorious "emotional growth" boarding school for decades of abuse. Both as part of a research assistant position and out of interest, Shain attended last year's trial over the Judge Rotenberg Center's abuse of Andre McCollins.

During the trial, the Judge Rotenberg Center and its representatives, faced with having to explain video evidence of their abuse to a jury and to the public at large, attempted to paint Andre McCollins both as irrationally and almost untreatably dangerous and as able to work with and learn from a program that punished him for doing so much as tensing in fear. On the other hand, Andre's mother Cheryl and her lawyer Benjamin Novotny presented a compelling case that showed this "treatment" to be as senseless and cruel as the video footage would suggest. The outcome of the trial and its media coverage went beyond the undisclosed settlement between the parties, leading thousands worldwide who viewed what happened to Andre to demand an end to the torture. That end, with continued efforts, may well soon be achieved.

Shain's seven part series on the Andre McCollins trial was published on the Autistic Self Advocacy Network's site and can be read here.

This is the second segment in a series on people who need to be recognized for the work they continue to do for the betterment of the autism community.








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White Polo Shirts, Autistic Eyes

Multiracial boy whistling, sitting on brown leather chair  wearing a white polo shirt

 with the words "stand against restraints, seclusion, and bullying by teachers" 
© Kerima Cevik

About a week ago I was looking for a recent picture of my son stimming as my annual contribution to Paula Durbin-Westby's Autism Acceptance Year site, and came across one of my favorite recent photos of him. I decided that this would be his official Autism Acceptance Month photo this year. But why I made this decision requires the story of how he came to be the proud owner of what I believe is the only white polo shirt with the provocative words "Stand Against Restraint, Seclusion, and Bullying by Teachers" manufactured anywhere, to date.  That slogan was emblazoned on t-shirts and is now part of the history of the protests brought to the very door of the Judge Rotenberg Center in the course of a valiant war to release one of the few tapes of sustained torture that survived the purging of evidence related to charges brought against the center over  the many years of its existence. So here is the story.

Mustafa was one of the first customers to order a t-shirt created by autistic activist Lydia Brown, for those of us who were families fighting against the maltreatment of autistic children in school placements of all kinds. By this time Emily Holcomb was safe and Chris Baker's petition letter was being passed through all internet social networking channels. No one knew that  Cheryl McCollins would come down like the wrath of the Lord on the JRC in court and request the court release the video of the hours of torture her son Andre suffered at the hands of staff to the media. Everyone got their new t-shirts and was happy. The problem was, once the shirt was on him, Mu would not take it off. As happens with some children, he liked the shirt and wanted that shirt on every day. Of course, it began to fade from frequent washing. And there was no guarantee that he would like a new identical t-shirt as much. More importantly, he needed to dress more formally for some of the places we were going and that t-shirt was too casual. I posed the problem to Lydia and asked if they could do me a favor that might make both Mu and me happy.  The result is the white polo shirt in the photo above. Even though the writing beautifully stitched on the right breast area makes special needs service professionals wince, they regularly compliment him on the how great the white shirt looks against his dark tan complexion.

The magnitude of what this photograph means to me becomes clear when it is realized that although Mu did not choose to stop whistling while I was taking the photo, he did look right at the camera. He is, by nature, someone who does not look directly at anyone, so when he does it means you have been given a gift. This is also the first photo in which he is beginning to look like the man he will become. And that small sign of a different operating system, his autistic eyes, look for a brief instant directly into mine. If you have spent any time around autistic adults and they graced you with those eyes you will recognize the eyes of your children and catch your breath. The feeling is one of finding a long lost cousin of your child at a family reunion. You see the eyes, even in complete strangers, and you don't have to ask. Even when they don't say "I am autistic", you know.

 It came to me recently that one of the many reasons I care so much for all of these activists, and all those autistic children and adults they fight for,  is because they have, regardless of color, my son's eyes.  When they are able to look directly at me for an instant, it is a gift and a surprise, and at that instant, I remember my son and how much we love him.  I "see" my autistic son is growing up.