Understanding The Disability Rights Movement: On The Washington Post's Neurodiversity Article

ADA Americans with Disabilities Act 25 1990-2015 Official Black Logo

I just read "How autistic adults banded together to start a movement", Sandhya Somashekhar's Washington Post article on the neurodiversity movement.  While I was reading it, I realized that the Washington Post tried to produce an article that wouldn't anger those who dominate the autism conversation while giving a nod to the autistic civil rights movement without presenting it for what it is meant to be, a legitimate arm of the greater disability civil rights movement. On the 25th anniversary of the Americans with Disabilities Act, that is inexcusably sad.

I am an extremely demanding woman. I have to be. I'm fighting for my son's right to personhood and his right to live his life qualitatively better than what is dictated by those who profess to know what autism is and what he needs without making him and those like him part of that conversation. A half-measure is not enough.

It is as if some major media outlets have a formula for dealing with the disability rights movement in the autistic community and this article is an excellent example of that disturbing formula. These are the ingredients in the recipe for dismissing and derailing autistic civil rights as a movement:

Recipe for Erasure By Implementing Structural Ableism:

Skew the term Neurodiversity so its meaning is conflated with a social group and hobby for quirky geeks. Make certain to stretch that veneer tightly over the group you wish and entrap them in the misrepresented term.
Present the entire history of disability rights movement in the autistic community as beginning with the foundation of The Autistic Self Advocacy Network (ASAN) thus erasing every activist who is an adult over the age of 30 and polarizing the autism rights community not involved with ASAN. Bake that at 400 degrees. Divide and conquer
Dismiss disabled disability rights activists as "quirky, nerdy, weird, highly functioning mavericks" this reduces the threat that they may be more intelligent than is wanted.
Dismiss major accomplishments by focusing on small ones like changing verbiage to satisfy those darned "neurodiversity" people
add a pinch of clinically depressed crusader parent who hates her life and anthropomorphizes and demonizes autism to feed a heavy digital exhibitionism habit (see my previous article on other crusading people)
Be sure to erase nonspeaking autistic people by the exclusion of their voices! Including them would dismantle the pinch of crusader parent's argument that "real autism" doesn't speak and therefore isn't any good to society.
Don't forget to also add a pinch of the word Autism Speaks - branding Autism Speaks as the enemy of Neurodiversity is critical so it appears legitimate by comparison
Do not discuss autistic culture even when it is clearly presented  because that would be acknowledging such a thing exists
exclude any person who is not white from the conversation because we all know that only white people are autistic? Only what white members of the community say matters?

Result? A beautifully derailing, non-article that presents autistic adults who are doing autistic pride and presenting themselves publicly at great personal risk as fringe disabled people who need tolerance but are misguided.

Some Good In the Mix
The good parts of this article? It was great to see autistic activist Alanna Whitney there. New faces to the public are a good thing, and she was eloquent in her presentation despite the article's attempts to present her as quirkily and as oddly as they could. The term NeuroQueer appeared in a Washington Post article, a very big milestone for the movement and I hope they saw that despite the attempt to present it as a fringe group to a fringe group. Steve Silberman was quoted and his book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity" was mentioned. Now back to what truly concerned me or just was very, very odd.

John Elder Robison As The Neurodiversity Authority
I am still trying to wrap my head around John Elder Robison being cited as a topic expert on neurodiversity. I could fill pages with the activists who have worked from the time before I was born, and I'm 54, for the human rights and civil rights of autistic people, and who will never be recognized for their contributions. Mr. Robison is a recent convert and was made a neurodiversity scholar in residence at the College of William and Mary in Williamsburg, Va. after Asian American Autistic Activist Lydia Brown was invited to William and Mary to explain what neurodiversity was and its importance in disability rights. Mr. Robison is a quick study and has learned a great deal. But the sad fact is that his fame allowed him to simply step from his prior role of years at Autism Speaks to this new role. In the process many activists, who did not become activists to be famous, who are not white, who are not cisgender, are silenced. Mr. Robison can't speak for them. Only they can speak for themselves. If NeuroQueer was going to be mentioned, then an activist who was NeuroQueer should have been quoted. If neurodiversity was going to be addressed, the first thing any scholar on neurodiversity should have done was correct the misconception that neurodiversity is solely an autism-related term and refers only to the autism rights movement. Neurodiversity must be properly defined.  This conflating is harming the progress of a greater movement for civil rights.

Conflating The term Neurodiversity's history with ASAN
The term 'neurodiversity' pre-dates the foundation of ASAN. It is a term that refers to a larger group of people than autistic people. The movement for autistic civil rights and personhood began prior to the existence of the internet. But deliberately conflating the term neurodiversity with ASAN divides the community and that is the goal.

Presenting Clinically Depressed Parents as Autism Activists
The Washington Post sees no harm in using Ms. Stagliano, an extremely unhappy mother of three autistic young women with intense support needs, as a polarizing figure to up their hits on both this article and the one she wrote before about Autism Awareness Month, which they clearly feel they can squeeze a few more hits from. I am always horrified at what Ms. Stagliano is willing to allow to be published about her own daughters to further her crusade to make everyone believe that her experience of autism is the only one that matters. Her huge platform and too loud voice have done such great harm. Yet she is continually given the opportunity to shout her message of doom and woe to all who will hear.

In this case, the Post again mentions  her role in meeting her daughters' personal care needs from her previous article that may again violate their rights under HIPAA. Please see my article on Digital Exhibitionism in the Internet age here, explaining why these types of disclosures are concerning and inhumane. Depressed parents of autistic adults who have not kept up with new assistive technology, medical services that can increase autonomy by reducing or eliminating  certain types of personal care needs for disabled adults are out there. Ms. Stagliano's religious beliefs may not allow certain medical supports for her daughters. Given Ms. Stagliano's lack of concern for their privacy and since according to her own rhetoric, they are not able to give consent, I cannot speak to that much more except to say that if she got some treatment for her depression and sought out organizations like the Autism Women's Network, she might learn that her daughters can live autonomous lives after her passing regardless of their degree of disability and despite her misconception that because their needs are intense, she is the most important person in their lives.

She spends so much time writing about how awful her life is that I am assuming she has more respite than she is presenting to others. There is no way one can spend as much time online and involved in all the activities she is involved in with 3 disabled young adults to care for unless she has these supports. Most of the families I advocate for just don't have the time to demonize autism to this degree because they have no respite and are too busy caring for their loved ones and fighting for their futures to crusade for a cure of their parental unhappiness by creating an autism boogeyman and making it a medical monster that continues to frighten parents into not vaccinating their children.

 I am always concerned when I see the amount of time Ms. Stagliano spends on this topic. With three young disabled women to care for, sleep deprivation must be a real concern. That lack of sleep interferes with executive function and over time can lead to disaster.  There are other parents who get sufficient rest, have proven track records of legislative and community advocacy that have improved the lives of autistic adults, children, and families, who might be better alternatives to present as parent activists. Simple rule. If a parent hates their life, they aren't really going to be the best resource for discussing how to be a life coach. It is responsible journalism to find resources who are experts on their topic through training and education as well as simply giving birth to a disabled child, balanced in their views, and logical in their presentation of facts. The Washington Post knows about the recent outbreak of the measles and other preventable childhood diseases. Yet they present a mother  as an autism authority who leads a large community in crusading against autism with the idea that vaccines cause autism and autistic people are vaccine injured.

Opportunities Lost In Translation
So there is Steve Silberman with a 400+ page book on the history of the neurodiversity movement and no brief timeline of history prior to ASAN is mentioned or illustrated in this article. Why not? Why was the story of Alanna Whitney and a chapter of ASAN turned into a stereotypical view of autistic adults in the movement being quirky, using verbal speech, presenting as 'highly functioning' people? Human rights should never be presented as a social science experiment that became a nonprofit.

Someone should have been allowed to say that Autistic people are fighting for their existence and acceptance as equal members of society. The autism rights movement is part of the greater disability rights movement.

Then there is the statement in the article:

"Neurodiversity advocates, by contrast, consider people with autism a minority group, albeit one with extra challenges that might need accommodating. They compare themselves to the gay rights movement and to the protesters trying to improve police treatment of African Americans."

Wow. Dear Ms. Somashekhar: The movement that predated and gave rise to the gay rights movement was called the Civil Rights movement. You might want to google that. All those protesters you're mentioning, they are this generation's civil rights activists. What you took away from the #BlackLivesMatter movement, which is a small fraction of a decades-long struggle for Black civil rights equality is "the protesters trying to improve police treatment of African Americans?" Over 600 deaths and you dismiss a human rights crisis in half a sentence? This is about the lack of accountability. This is about no one giving a damn when our people are shot by those who are supposed to keep us safe. This is about video footage of horrific crimes against Black people witnessed globally and the World seeing that justice in America doesn't exist for people who aren't white and wealthy. Now this has escalated to targeting predominantly Black churches and the innocent worshipers in them and you present all that as a 'profiling while black' thing? My what a social change reporter you are.

Statements like "They compare themselves to" imply that disabled people have no legitimacy to declare their own personhood. I grasp that by definition journalism must present things in as unbiased a fashion as possible. But damn. All disabled people have the same rights as everyone else. The twenty-fifth anniversary of the Americans with Disabilities Act has clearly blown past the Washington Post and left no understanding that disabled people have been succeeding in fighting for their right to take an active, central, and inclusive role in society for more than 100 years. This isn't a hobby for quirky people. This is civil rights movement. Until a major paper can give it that respect, we will not succeed in educating against ableism.

We need to stop allowing Neurodiversity to be displayed as the thorn in the side of Autism Speaks
This dichotomy really is giving Autism Speaks free advertising and also allowing people to bring it into conversations where it does not belong. We need to correct the definition of neurodiversity. We need to establish clearly what the autistic disability rights movement is and explain that disabled people across communities are fighting for survival and personhood in a society that others them. That is the job. Everything else confuses and confounds the conversation. This isn't about Autism Speaks. It is about Autistic activism.

Okay, I need to stop. My nonwhite, nonspeaking, intensely disabled and awfully wonderful tween son is hugging me and telling me it is his time now.

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Resources:

1. Neurodiversity 101 above accessible video by Alyssa Hillary
2. Reconstructing Disability Within A Neurodiversity Framework by Lydia Brown

About NeuroQueer
3. What is NeuroQueer? by Michael Scott Monje Jr 
4. Neuroqueer Rhetorics: Gazes, Spaces, and Relationships Dr. Melanie Yergeau and Michael Scott Monje, Jr  (includes pdf of talk and resources)

5. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman
6. About Black Lives Matter

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.

Mother's Day

Today finds me going back to why I felt the need to write a blog in the first place, and where I want to take the blog from here. It is sometimes a good thing to hit the brakes on what I'm doing, look to see where I am going and decide if I really am in such a hurry to get there.

My original purpose in writing this blog was to have a body of work for my son and my immediate family. This body of work was to be a clear statement of how I felt about my son being autistic. It was to make it apparent how much I loved him.  It was meant as a vehicle for everyone to know my wish that he be as autonomous as he is capable of being.  This body of work should make it clear to any reader:

• Our son is loved unconditionally. He is not loved despite his autism diagnosis.
• I have faith in our son and presume he is competent even when others do not.
• Whatever advocacy work I do is done to gain acceptance, inclusion, and accommodation for our son and those like him.
• That my purpose is to stand by my son and not have anything I do, including advocacy, overshadow that critical purpose.

This blog was to be proof of how proud I am to be his mother, and what an amazing person I believe he is. Mustafa has great creativity, determination, and strength of purpose. These qualities are laudable in any human being, but in him they are opening the way for him to succeed in a world where he is seen as less than the least of God's children, because he is a minority even among his peers. So as he fights for mastery over his environment, it is my task as his mother to fight for a rightful place in society for him.

I decided to set the direction of The Autism Wars blogs back on that course. To that end, I am choosing topics I think are important to him, and people I think are role models for him and examples of what we all can be as advocates ourselves.

 Today I decided to talk about people who fit that criteria; those who quietly wage war against great odds for neurodiverse adults and children, and continue to speak out and fight for all people on the autism spectrum while seeking justice for their own children and loved ones. Since it is Mother's Day, let's start this new journey with two amazing Autism Moms who don't blog.

Andre McCollins and Mom Cheryl in happier times

Cheryl McCollins fought for 10 years to have the video of her son Andre’s torture at the Judge Rotenberg Center released to the press. She continues to fight to close the ‘school’. Cheryl sued the JRC for the funding Andre will need for his care the rest of his life. Andre has never recovered. Cheryl joined protesters outside the JRC and continues to use her voice to speak out against JRC and the torture of young Autistic people in the name of discipline. Cheryl even created a petition on Change.org asking for support in demanding the State of New York cease sending students to this center.

Emily Holcomb and Mom Jenny Parker Holcomb,
photo courtesy of the Holcomb Family

Jenny Parker Holcomb was completing an IEP meeting for her daughter Emily when the sheriff's department appeared with a police complaint against her daughter, accusing Emily of slapping a teacher. Jenny had to explain that Emily was on the profound ray of the autism spectrum, nonspeaking, with intellectual disability. Emily had been so mistreated at her school placement that at one point she was restrained for 55 minutes by staff. With the help of special education attorney, activist, and father of a child with autism James Gallini, Jenny began the fight for Emily's future. Lydia Brown, who read about Emily's situation on Landon Bryce's ThAutcast blog, offered to write a petition on Change.org and that petition began a social media crisis that no one was prepared for. Assault charges against Emily were dropped. Emily has since thrived in an appropriate educational placement and community activities that give her the life skills training she needs to transition to adulthood and autonomy. Jenny realized from Emily's own horrific experience that this should never happen to anyone else. She has since led parent support groups and online action groups, empowering other parents to stand with their children and take on whoever abuses them.

Happy Mother's Day

This is the first 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.

Note: James Gallini, Landon Bryce, Emily Titon, Shain Neumeir are names you should know. They play very important roles in these stories, as you'll see later.