Friday, January 15, 2016

On Parent Activism And Mediating the Autism Wars

"A Chinese bamboo book, open to display the binding and contents. This copy of The Art of War (on the cover, "孫子兵法") by Sun Tzu is part of a collection at the University of California, Riverside. The cover also reads "乾隆御書", meaning it was either commissioned or transcribed by the Qianlong Emperor."  Wikipedia photo credit vlasta2, bluefootedbooby on -

Victorious warriors win first and then go to war, while defeated warriors go to war first and then seek to win. 
Sun Tzu, The Art Of War

Happy New Year.

It took a long while for me to decide what to post first this year. So many topics matter, and so much is happening simultaneously. The topic I thought I might express an opinion on to start off 2016 is an aspect of the journey involved with the idea of being an ally to autistic people and what that should mean.

What happens to some of us who are parent advocates is a kind of euphoria at being thought of by activists as an ally. And that can lead to a grave mistake in thinking. Because many parent allies view themselves as meditators in the autism wars between the medical model community parents and professionals, autism parents in general, and autistic adults, pro disability rights and human rights stakeholders and activists. By definition, allies are not self appointed and this understanding expands to include self designations as bridges between parents and autistic adults in our community. Such bridges, or potential mediators already exist. If we are to be parent allies, we should understand that those roles are not ours.

Autism is unique because in previous generations, it has gone undiagnosed or misdiagnosed for the lifetimes of many people. This is particularly true for autistic women. And while this is not true for my son and his peers, for many autistics autism expresses as an invisible disability. So what exists in our community are a very large population of parents who discover when their children are diagnosed that they are also autistic. We also have quite capable autistic parents diagnosed as children who marry and have children. Those autistic parents are the mediators and bridges in our community. They are in fact the only population of stakeholders in our community who completely understand what it means to be autistic and what it means to parent autistic children.

Meaning that no matter how beloved an ally a parent is, unless that parent is both autistic and a parent they are not equipped to bridge the gaps between groups of stakeholders in the autism community. Period. While a parent may also express neurodivergence, it does not necessarily make them autistic. So while their voices are invaluable and necessary to the autism conversation, autistic parents are the group that sits firmly in both sides of the autism wars for personhood, inclusion, accommodation, and representation.

The role of those of us who are parents who do not carry the autism label is to reach out to autistic parents, amplify their voices, and ask how we can assist them in their roles as the voices in two stakeholder roles. In doing so, we must understand that our voices have privilege, and amplification of marginalized voices does not diminish our say or sway in the community.

Tuesday, November 10, 2015

Surviving Inclusion: Non Speaking Autistic Communication And Ableism

"Not only does God play dice, but... he sometimes throws them where they cannot be seen."
Stephen Hawking

Mustafa using sign language to tell his sister what he wants to buy ©K.Cevik
The quote above reminds me that everyone and everything has value, and our not being aware of what value a human being has cannot negate that worth.

I've been involved with other things for awhile. Things happening in the non virtual world, or 'meat space' if you will, motivated me to try and talk about some other things that have been on my mind about communication, parenting, and the presumption of competence.

An young autistic friend of mine, Emma Zurcher-Long, learned to type rercently and now can communicate by typing independently. She is an excellent example that assistive technology assessments and pathways should be continually offered to autistic loved ones no matter what their age, regardless of whether or not prior attempts fail. The tendency of conventional wisdom driven autism nonprofits to constantly emphasize early intervention, then deem the autistic nonspeaking individual 'doomed' if they cannot meet certain criteria after such intervention  or by a certain age is incorrect . 

Regardless of age, the most important bar to community access, autonomy, self advocacy, and proper care autistic nonspeaking people face is lack of communication support. Schools don't prioritize this in IEPs. At a time when some schools are thwarting the Individuals with Disabilities Education Improvement Act (IDEIA) by using online IEP formats as templates to standardize goals by disability rather than creating truly individualized education plans for disabled students, we parents must be vigilant about insuring that communication is the highest goal for our nonspeaking autistic students. 

 Annual assistive technology assessments should be required for nonspeaking autistic students until an AAC system is found that is a good match. In addition, overall student performance enrichment by intensive speech service support should continue until the individual student has mastered  AAC device based communication. This means mastery sufficient to use it to communicate effectively with their teaching team in an inclusive classroom setting. Establishing a solid communication foundation between nonspeaking students and all teaching teams that will facilitate their educational lives both now and in the future is critical. This is rarely if ever done in the present special education classroom or in what passes for inclusive classrooms in too many public schools. It is the primary bar to inclusion of nonspeaking students in the general education classroom. While we are all chasing the dream of the fully inclusive classroom as the natural socialization tool for disabled children, we are overlooking giving them the primary means of accessing that or any other environment that is their right.

The lack of comprehensive augmentative communication support allows abuse, neglect,  and presumption of incompetence of the nonspeaking student.

My nonspeaking friends and colleagues' honest revelations of the ups and downs in their life narratives are important because this valuable insight helps us understand that even if we happen to hit on an AAC support that allows our children to type or communicate independently and fluently tomorrow, that doesn't mean that our disabled loved ones will suddenly be 'indistinguishable from their peers', and that is a myth too many parents who manage to get their kids to type grab onto and it is the root of the ableism based abuse that happens to nonspeaking autistics even after they acquire a means to communicate. 

The example of what happened to Carly Fleischmann after she began spontaneously typing is before us. She has permanently lost her ability to type, and must find other ways to build words, because neurodivergent Carly continued to be unacceptable to her parents, despite the fact that their ableism throughout her life caused the pain and self loathing she now carries. Disability doesn't disappear because someone is able to communicate better or because technology offers greater community access. Those of us who parent and educate need to grasp that and accept that communication doesn't equal a 'cure' of disability. Nor does being able to type to communicate mean we have the right to demand our view of 'normalcy' from a divergent individual.

The critical nature of gaining, then mastering device supported communication means that those autistic individuals may be better able to explain when they've erred and for us who are parents, that means the doors to facilitating and mentoring open wider. Gaining AAC support also means the chance for diagnosis of conditions like auditory processing disorders that require the person being tested be able to communicate what they hear during a test. So if you are carers of autistic people who have gained communication skills through AAC support, consider testing for conditions that may still be undiagnosed before placing increased demands on your loved ones they may not be able to process.

As people grow up and grow older, they will argue. Another hold over from both the angelic disabled child infantilization and the idealized child myth is the concept that somehow our disabled offspring don’t have a right to lose their tempers, behave badly, or fail in the same way non disabled offspring do. We parents, educators, and carers need to stop putting that kind of expectation of compliant perfection on our disabled nonspeaking loved ones and students. Why then is compliance and correction writ so large in autism support and intervention? We need to educate the communities outside of ours that our children have a right to express frustration, sadness, disappointment, fear and anger as long as they cause no harm to themselves and others. We have this same expectation of every young person in society, yet our expectations of our disabled young people are neither fair nor reasonable.

What we are not doing in the disability rights advocacy community is stressing that failures and behavioral missteps are how we humans learn.  We were never meant to be the behavioral prison guards of our own children. We were meant to parent them. Once we change that attitude, which is gaslighted into our brains by all those meant to provide service and support for our children, we will be at the doorstep of the breakthroughs we need to properly parent our own autistic children regardless of age, behavioral history, perceived degree of disability, or any other bar to a parent simply being a parent to their children. 

 Some nonspeaking people may never be able to communicate as fluently as others. Some maybe truly operating at a cognitive level that is infantile. We must accept everyone as they are, and not reject association with a nonspeaking adult that is not the magic autistic trope of the silent shaman who wiggles his nose and causes miracles. We have to accept neurodivergence in all expressions and at all levels.

Many people, including neurodivergent people, either refuse to presume that a person with global developmental challenges can live and achieve an autonomous quality of life as an adult with the proper supports or refuse to accept this expression of autism as being part of the greater autism community. Everyone who holds these attitudes needs to realize that they are impeding the uplifting of an entire community and being part of a caste system that does not truly benefit anyone. When you act based on function labels you not only isolate  your peers but you do the dirty work of ableist people whose goal is to divide this very large block of people into smaller, more manageable groups who can then be denied the supports and services they need.  Wake up and understand that my son is just as great a person as a savant, an autistic who uses verbal speech, or a famous autistic individual whose head is filled with the helium of false praise so common on social media.

Degree of disability should never matter in the fight for human rights. Just as when a person who identifies as Black is Black whether they have vitiligo or not, a person who is Autistic is Autistic whether you are comfortable with their visible degree of disability or not. If people cannot tolerate being around teens like my son and his peers, then they need to take a good hard look about their own struggles with internalized ableism, rather than redefining autism to suit their inability to accept a group of people who share their neurology.

O. J. Brigance uses eye gaze technology to give the pivotal testimony against euthanasia legislation in Maryland.

One more very important thing about assistive technology for communication. If the chosen method of communication does not lead to the nonspeaking autistic user being able to live an autonomous life, then a better match must be found. Assistive technology only works if the end user is ultimately able to communicate whether parents or care providers are there or not. Note that both O.J. Brigance and Stephen Hawking have remained productive in the advanced stages of ALS because their AAC communication technology allows them to communicate autonomously with eye gaze technology. This method of commucation support was well thought out when they were at a stage of greater mobility. When we choose assistive technology we must be forward thinking by making years and we must give our students the foundation to be able to shift from older systems to modern, more seamless ones requiring less outside support. As a community, we should be lobbying for funding to expand the use of the most advanced technology for our own children, fighting for their autonomy, rather than warring over causation. 

May all your parenting, teaching, peer mentoring, or self advocating days be joyful ones. 

For my Son, Magnificent Mustafa N. Çevik and his outstanding father C.Nuri Çevik, Emma Zurcher-Long and Ariane Zurcher, Henry Frost and Lauri Swan Hunt

For more information about under the radar autistics who type independently with AAC devices:
On The Silenced Voice of Carly Fleischmann

Saturday, October 3, 2015

Open Letter to The Daily Mail: On Your Coverage of NJ v Anna Stubblefield

This is a blog about Autism but the reporting on this case upset me so much I felt compelled to complain. 

Dear Daily Mail,

Please issue a public apology to both those living with incontinence, and the disabled community for the truly awful way you presented this case to the public.

I realize that any legal case involving sex makes for salacious headlines that attract higher readership, and when the sex involves a disabled adult, it just makes things more headline grabbing, but your coverage of the verdict in the case of Anna Stubblefield is thoughtlessly harming entire populations of people.  In journalism words are everything and the way words are used to color information can be more damaging that the actual neutral revelation of factual information to the public:

Headline screenshot of the Daily Mail with headline reading "Jury finds female
 professor GUILTY of raping mute, cerebral palsy-stricken, diaper-wearing man
after claimed the two were 'in love'
Stephen Hawking is a 'mute', 'diaper wearing', individual who needs supports to eat and walk, and we accept that he can think, write books and articles, be married, and father children. But somehow we cannot accept that someone born disabled could communicate without speaking even when the media  has repeatedly reported that such a thing is possible? We know people can be aware, alert, and unable to use verbal speech, as the stories of disabled adults like Martin Pistorius make clear. Yet  the Daily Mail insists on using features of a victim's disabilities to denigrate him in the eyes of the public in order to make the viability of any intimate relationship between the victim and the convicted professor as abhorrently improbable and 'weird' as possible to all readers.

As the daughter of a wounded American military veteran and the mother of a multiply disabled son, I strongly object to the language you are using to report these events. Splashing "diaper wearing" across your headlines as if incontinence is a bar to intimacy is shaming entire groups of adults who live full and productive lives with incontinence.  No headline is worth shaming people in order to try and make your story seem more incredulous.

"Cerebral Palsy stricken" is also an unacceptable, thoroughly ableist turn of phrase, particularly in a modern world where people like comedian Maysoon Zayid, actor RJ Mitte, activists and musicians like Keith Jones and Leroy Moore are making it clear that we need to rethink what we believe about disability in general and CP in particular. I know quite a few adults who proudly declare their CP labels who are in relationships and are parents. Their children don't deserve to see CP splashed on a headline as if their parents marrying and raising them is "weird news".

Then there is the misogynistic commentary under photos of the accused entering the court room. Her legs were pointed out and what she was wearing was described as if she was putting herself on display and this is also truly disgusting to do to a woman in any situation. Pointing out that she was smiling with the presumption that this is weird is also not professional journalism. People smile when they are afraid, when they believe in their own innocence, and when they are out of touch with reality and have no understanding of the events around them. Unless the Daily Mail is capable of mind reading, speculating on why the accused is smiling by innuendo based turn of phrase is also inappropriate. Report the story. Don't degrade women to increase your hits regardless of the verdict in a case.

Even in cases where trial by jury has concluded that a disabled adult was the victim of a crime, presenting events as if we are not discussing a 34 year old adult, regardless of degree of disability, is disrespectful to the victim.  I expected at least an attempt at due diligence in investigative journalism without promoting the stereotypical presumption that a disabled man cannot have a relationship with another consenting adult. Having witnessed the opposite in my time growing up with disabled veterans who live with extensive physical disability and traumatic brain injury and have their spouses and children standing by them, that is the wrong message to send to the public.

It is my understanding that this trial has been going on over a year. Due diligence in reporting required that prior to the verdict in this case, The Daily Mail at least present a more in depth background of the case, including the following questions, to the public:

  1. Why did the victim's family consent to the use of 'Facilitated Communication'  as you emphasized it in your article, to begin with if they questioned its validity? 
  2. Why did the victim's family actively travel and enjoy conferences, consent to the victim auditing college courses and accept that the victim was genuinely communicating for years prior to the point where the victim disclosed that the nature of his relationship with this professor had changed and as such he would be attempting to leave their guardianship?
  3.  The victim's family, his legal guardians, were quick to file civil suit against Rutgers that failed. Does this imply they may have a financial interest in insuring the victim is declared incompetent?
  4. On what basis was the victim in this case declared incompetent to depose or testify? In cases of guardianship with disabled adults where competence is in question and the adult seeks autonomy from legal guardians, independent communication and cognitive assessments should have been ordered by the court, and the disabled adult, if able to communicate, should have been given the right to request independent legal counsel. Were these independent assessments done? 
  5. Everybody communicates. The victim could have been presented with simple communication tools that assist in determining the extent of any harm done him. Was the victim in this case questioned about the alleged abuse? Anyone capable of indicating yes or no can testify or be deposed about events. The question is, was this done? Wearing diapers doesn't impair brain function, nor does needing help with feeding and other supports. These things don't automatically mean lack of cognition, as again stories like Martin Pistorius' life story teach us all. 
You are reporting the conviction of a trusted professional for the rape of a disabled adult, the collapse of the accused's academic career, a potentially life ending prison term, and the eternal silencing of a victim who appears to have never been re-assessed or given a chance at any viable secondary means of augmentative alternative communication, after years of  being able to enter and audit courses from a college campus, travel, and be presumed competent. 

Nothing in this case is worth lampooning, or being used as internet fodder. I am quite concerned about the mental health of both the accused and the victim in this case. It seems odd to me that if a professor with no history of abusing others acts so completely out of character, no mental health assessments were done to insure that she was able to stand trial. 

 I am wondering why disability rights organizations not directly linked to Ms. Stubblefield and her activities are not concerned about the victim, why there was no attempt to offer services to find neutral AAC support by at least approaching the family and offering some help, and if anyone has even bothered to explain to the victim what has happened to his life and what will happen now. If I am wondering these things, then it is the job of reporting media like the Daily Mail to research and report them.

 Whatever this case is, it is much more complex than the Mail is presenting it and it is sad to me that a better job was not done investigating and presenting this to the public. If I can google and get more information on this case, it seems that the Daily Mail could have done a more humane and complete job putting together a story that related the facts without insulting so many people in the process. 


Mrs. Kerima Çevik
Former Daily Mail reader

'Mute', 'Incontinent' Males
Stephen Hawking shares his voice software with the world
Martin Pistorius: Trapped In His Body For 12 Years, A Man Breaks Free

Badass Disabled People
Writer, Actor, Comedian Maysoon Zayid
Rapper, Activist, Author, Leroy Moore
Rapper, Speaker, Activist, father, Keith Jones mentoring

The Case of Anna Stubblefield
Great Case Summary

The Offending Daily Mail Article
Failed Civil Lawsuit Against Rutgers and Stubblefield

Baseline AAC App Example
Yes/No Answers App
Cost $1.99

Tuesday, July 28, 2015

Where is Sharisa Joy Kochmeister? The War for Safety, Personhood, and Competence

Sharisa Kochmeister on her College Graduation Day
credit Facebook
The most terrifying thing that can possibly happen to a nonspeaking disabled adult happened to a dear colleague and online friend of mine, Sharisa Joy Kochmeister. She was taken against her will, placed first in a nursing home for seniors with dementia, and is now in a "host home" in an undisclosed location, the supports she needed to communicate were taken away from her, her family, concerned friends, colleagues, even her own doctor are being kept from seeing her.  In one series of unfortunate events, Sharisa is snatched away and her human rights have been snatched from her. Jefferson County, Colorado assumed guardianship of Sharisa, a brilliant, college educated autistic activist and former president of AUTCOM, The Autism National Committee. They have declared Sharisa, who when given her keyboard and safety to communicate freely tested at least 2 standard deviations above the mean, an  IQ of 47. They say she is unwilling to speak to them, therefore they reject her competence. She is not communicating, therefore she is not intelligent or competent? My God, would you speak to these creatures who rip every anchor and support you have away from you while you are in the midst of a serious health crisis, place you in a nursing home for elderly dementia patients, and then declare you incompetent? What on earth could she possibly type to them? A scream?

Sharisa used to blog at My Surreal Life. This is how she describes herself there:

"I'm 31 now, have autism, cerebral palsy, epilepsy, dyspraxia and a genius IQ; and communicate almost entirely via keyboards. I am former President of Autcom, on the Panel of Advisors on the Spectrum for the Autism Society of America; publisher and managing editor in chief and writer for "The Voices and Choices of Autism" and so on, and etc. I am also a university graduate with a dual degree in Sociology & Psychology with honors and awards; a consultant, an advocate, and a FABULOUS FRIEND! ;-)"

The tragic story of how Sharisa disappeared and is now a prisoner of Jefferson County  is succinctly stated in the Denver Post Op-Ed: Meyer: An outrageous human services case in Jefferson County

Sharisa Joy Kochmeister credit Facebook
I want to scream at them. This is like a chapter in a horror story. Now no friend or colleague is able to check her welfare nor is "allowed" to visit where she is. She has been left without communication supports. We know that she wasn't placed in the correct environment and we know Jefferson County Adult services is still in violation of the Olmstead decision and the Americans with Disabilities Act by holding her against her will. By removing the supports she needs to communicate  they have violated her right to self determination. That is how much power a state agency has over disabled people who need AAC to communicate. In one heartbeat, they can make your loved ones disappear in a quagmire of bureaucracy and cruelty and snatch every right a disabled adult has to make their own decisions, see their own friends and colleagues, and live their own autonomous lives. The erasure of everything Sharisa has achieved and what this must be doing to her mental health is devastating me. I need to make this clear to everyone. So I'm going to repeat what is happening to Sharisa and state again that this is happening over and over to disabled adults across disability constellations who need supports to communicate in crisis situations:

The following violations of Sharisa's rights under Olmstead and ADA took place:

Sharisa typing on her speech device
credit Facebook
1. Sharisa's communication device and supports were removed and she was therefore devoiced and unable to self advocate
2. She was removed to a nursing home for seniors with dementia, an inappropriate placement for her disability and a violation of the Olmstead Decision
3. Jefferson County Adult Services tested her intelligence without her speech support, therefore their finding of her IQ to be 47 is not valid as there is ample documented and video evidence to support she is an independent typer and a college graduate.
4. Jefferson County cannot simply seize control of a person competent to self advocate after blocking the disabled person's ability to communicate without that person's consent regardless of degree of disability.
4. Jefferson County is keeping Sharisa isolated not only from the supposed 'harmful' parents but also from everyone including advocates wishing to do wellness checks on her condition and her own doctor. This is not okay and is a red flag that Sharisa needs her own legal representation not a court appointed advocate that presumes she is incompetent and therefore erase her from the defense of her own right to self advocacy and self determination. Seclusion of disabled people is against the law and a violation of basic human rights.

When did we cease to live in a democracy? When did those agencies whose purpose is to protect become jailers and secret police, denying even a disabled adult's own medical professionals the right to insure their safety in this new setting? Who will be next? Because no matter how much wealth we have, no matter what power we think we wield, this can happen to any of our nonspeaking adult offspring at any stage of their lives and we their parents are powerless to stop it. One misunderstood gesture, one bitter or ableist staff person, any case worker who secretly refuses to believe that nonspeaking adults are competent, and they can take our loved ones away and we will never see them again.

This is a war for the personhood of disabled adults.  This is happening all over our country. Recall the case of Abreham Zemedagegehu, a deaf U.S. Citizen jailed for 6 weeks for a crime he did not commit, mistreated and left voiceless because the police refused to provide him with the communication supports he needed. He was Black and homeless so he was therefore guilty?

 While everyone with privilege is celebrating ADA's 25th anniversary, they also need to be fighting for our people. What benefit is privilege if it cannot save lives?

Beware the accusation of Munchausen by proxy: This accusation is at the center of another high profile case in which a young woman with mitochondrial disease was imprisoned in a Massachusetts hospital, denied treatment for 16 months, and the hospital and the CPS of Massachusetts is responsible for her health declining such that she is now confined to a wheelchair and may never recover her health completely. The story of Justina Pelletier is terrifying:
The Munchausen by proxy parade of destroyed families and tragedies is endless. Jenny Lockley, the mother of an autistic young student, had her son's formal diagnosis rejected by a school that simply did not wish to provide him services and their insistence that she was "just trying to get attention" nearly destroyed her family and her life:
Here is the story of Karen, and how she and her husband lost two children to the lie of Munchausen by proxy:

Sharisa typing with her father seated on her left. Sharisa
was featured in the groundbreaking Autism documentary
 "Loving Lampposts" credit Loving Lampposts
Regardless of degree of disability every disabled person has a right to self determination: the entire victory in the landmark case of Jenny Hatch, is that a disabled adult, regardless of degree of disability, has a legal right to decide where they want to live.
If you take away a person's wheelchair you've deprived them of their mobility. If you snatch away a person's certified ASL interpreter, you have devoiced them. If you take away a nonspeaking disabled person's AAC support you have devoiced them and taken away their ability to advocate for themselves. Removing a critical support from a disabled person is against the ADA and might even be a legal assault on their person.

 I am waiting for a statement of outrage from more disability rights organizations on this. From the onset, I've been waiting for a proper petition, a form email and a list addresses to write to those in charge of adult services in Colorado. Sharisa needs her voice back. She needs her right to decide where she lives and how she lives back. Sharisa is one of the women who led the fight for the presumption of competence of nonspeaking autistic people. She doesn't deserve this degradation and isolation, nor this abandonment from the community she fought for.

All of this hoopla about the 25th anniversary of the Americans with Disabilities Act means zip if any human services entity can get away with devoicing, snatching guardianship, and obliterating all the self advocacy and self determination of a nonspeaking disabled adult. Is this the world we want for our children? I for one don't. This nightmare straight out of a Lemony Snicket novel needs to end.

Where is Sharisa Kochmeister?
Colorado: Give Sharisa her life back.

Autism Community. Fight for Sharisa. Write the Governor of Colorado, Human Services, anybody. Email Colorado law makers.

Fight. She fought for us. Now it is our turn.

There is a new petition for Sharisa on
Sharisa is in what is labeled in Colorado a "host home" facility now in an undisclosed location. To our knowledge she is still being denied any assistive technology communication supports. As soon as we have a postal address or email where we can sent letters or email to her I will post it here. She needs our words of support to tell her she's not alone. Sharisa life is very restricted and now and going from a free life to the this one must be traumatic for her. Others are also blogging about her crisis situation. I'll post those effortsin the reference list.

Sharisa's story
The Loving Lampposts Documentary featuring her:
What is the Americans with Disabilities Act (ADA)?
What is tIn Olmstead v. L.C., 527 U.S. 581, 119 S.Ct. 2176 (1999) ("the Olmstead decision"),?

On Denial of Communication Supports for the Disabled 
Abreham Zemedagegehu's Story :
New: Amy Sequeniza for the Autism Women's Network:
Deaf couple denied interpreter fo birth of baby:
Deaf Mom Sues for the Right to Have Sign Language Support in Delivery Room:

On seizing guardianship of children and adults using the Munchausen by proxy accusation: 
Justina Pelletier's Story :
Jenny Lockley's Story :

On the Right of Neurodivergent individuals to self determination in  deciding where they live:
Jenny Hatch's Story:
And here

Tuesday, July 21, 2015

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 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 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 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 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 an 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 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 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.

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

Thursday, July 16, 2015

A Moment of Crusading Faux Pas: Watching Autism Speaks Destroy Its Brand

Once you see a thing you can't forget it. Unfortunately I am being made to witness this again and it saddens me. The professionally crafted photograph of Bob and Suzanne Wright that must have taken an entire photo shoot to achieve, yet again using their grandson as scenery to promote their brand as "crusading heroes" against autism.  In ten years the Wrights have never grasped that using a disabled person as scenery to justify speaking in their place is going to make a great many disabled people and the families who love those people sad at this extreme lack of understanding of what ableism is and how their behavior exemplifies and perpetuates ugly stereotypes about disabled people.  But I need to say here that People Magazine got it right. Bob and Suzanne Wright are crusading against autism, autistic people, and everything that being born with a brain that is divergent from the norm stands for. I am not certain that merits a title of heroes. It does concern me though, because that particular two word combination reminds me of another couple I grew up seeing back in the 70s.

Bob Green and Anita Bryant, credit Huffington Post
Many of you may not remember this other crusading couple. They were also deeply religious and believed their crusade was just and God was on their side.They also thought of themselves as heroes.  Bob Green and Anita  Bryant were crusading against gay rights and pornography. Things came to head at the moment of a Phil Donahue live broadcast when most of the nation realized there was something very disturbing about Anita and Bob Green. Ms. Bryant's naked hate and homophobic bigotry was as shocking to witness as it was impossible to hide. Mr. Green had an affair in the past with a 17 year old girl that returned to haunt him and destroy his years of carefully crafted self branding as a pillar of moral rectitude. The interview, meant to clear things up, was a disaster. It was the turning point that began a sad, embarrassing tumble into obscurity, bankruptcies, near suicide for Bryant and a bitterness in her ex husband Green that he carried to his grave.
Ms. Bryant hit with a fruit creme pie by LGBT rights activists
during an interview1977 credit Wikimedia Commons

Today, all these years later, gay rights have gained great victories. Strides have been made, although there is a long way to go in understanding that marginalizing people for who they love is wrong. The Greens were on the wrong side of history. Ms. Bryant became the symbol of homophobic bigotry and remains so today. Crusading requires a zealous approach founded in a dangerously rigid thought process that implodes when expectations fail, and reason, understanding, and  humane common sense prevail.

The Crusader attack on Constantinople, from a Venetian manuscript
 of Geoffreoy de Villehardouin's history, ca. 1330
credit Wikimedia Commons
Autism Speaks has staggered along for 10 years, crusading very much the way the armies of the Fourth Crusade sent by Pope Innocent III  to save Christendom went forth and sacked Christian Constantinople when the supposed intent was to retake the Holy Land. The devastation to the city is heartbreaking to read even today:

"The magnificent Library of Constantinople was destroyed. Many of the civilians of the city were slaughtered, raped and looted. Despite their oaths and the threat of excommunication, the crusaders ruthlessly and systematically violated the city's churches and monasteries, destroying, defiling, or stealing all they could lay hands on; nothing was spared.[45][46] "

Autism Speaks 'crusades' against those they are supposed to be saving. They crusade without regard for the voices of autistic people because crusades are extremist actions. Crusading obliterates humanity. The Autism Wars blog is also here to allow others to witness these types of misguided assaults that butcher the autism community people like the Wrights profess to want to save and obstinately insist on trying to appropriate leadership of. More harm has come to the autism community from warlike crusading, and extreme reactions to autism than from any outside force working against progress in human rights, accessibility, accommodation, and inclusion.

Now that Mr. and Mrs Wright have been anointed the heroic crusaders against autism by a magazine, it is time for the everyone to get the message that what our stakeholders need is not the mega nonprofit version of a Fourth Crusade, where Autism Speaks continues to sack, pillage and loot the futures of our community by forcing their organization and its view of autism on everyone else regardless of who it harms. We need to present our own listing of what our community needs are. It is time to end the suffering that 10 years of appropriating the voices of autistic adults and families who don't support the Wrights' crusade against their existence have caused. Take your titles and leave the realm of public policy Autism Speaks. Your crusading is killing us.

Conquest Of Constantinople By The Crusaders In 1204
credit Wikimedia Commons
The board of directors of Autism Speaks might seriously consider having Mr. and Mrs. Wright dial it down and rethink their marketing approach to their nonprofit brand. Using the Wrights as the brand for an autism organization and using their grandson as scenery to justify this has just not gone so well for the organization. The time of presenting autism as the boogeyman is long past and pouring staggering amounts of money on the poor logic of continually presenting autism as a disease coming for everyone's child is really harming everyone. It makes our autistic loved ones targets for bullying and fear based hate crimes. See once Autism Speaks pushes this crusade, and destroys those they are supposedly helping, they can't go back, dust off the survivors, and claim they want to help them with services and supports. We've seen them rescind a job offer to a  mom asking for accommodation for her autistic child, rebrand their old research projects with new and insulting names that clearly label their organizational opinion that autistic people have  missing pieces, and fund things that are frankly scary and do nothing to actually help the huge numbers of autistic people their organization claims are invading the world.

Using one's privilege to get a People magazine given title displays the power of money and privilege, not heroism. See this was never supposed to be about Bob and Suzanne Wright. I believe Autism Speaks was, according to their own spin, founded to help their grandson and people like him. It is about all of them, you know the actually autistic people. Yet Mr. and Mrs Wright keep crusading and making the one person in their family who is autistic silenced scenery to be gawked at and to display for the correct optics in the name of promoting their personal views of autism. If they wish to express their views its a free country. But when they decide that their view is the only view and repeatedly try to dictate public policy exclusive of every other stakeholder in the autism community their crusading destroys innocent people and usurps the rights of those people like their grandson who must be granted the right to speak for themselves and their peers.

I think Autism Speaks needs to start over, maybe start working to actually move its founders to less polarizing, harmful roles and add some autistic representation and more true diversity on their board. Real representation rather than decorative people with titles to keep them out of the decision making loop. Some better marketing people on their team might help as well. While we're dreaming, lets go on to say Autism Speaks should begin funding  research that actually improves the quality of life for autistic people because autistic people have been part of voicing what would improve their lives and therefore all stakeholders would be included in genuine solutions to real issues that impact their own daily lives throughout their lifespans. Obliterating autism because autistic brains diverge from the Wrights' personal definitions of the norm is not a good way to "help" autistic people. Someone thought it would help to obliterate other marginalized groups rather than include them. That didn't end well, did it?

Oh, yes.

Mr. and Mrs Wright it is really okay to stop crusading now. Anita Bryant died at 80 but remains the eternal example of what happens when someone hammers their power and privilege to stand for something that is wrong and refuses to bend. This is not the legacy she wanted to leave behind. It is the legacy her crusading heroism left behind.

Sunday, July 12, 2015

With Liberty And Justice For All: "Will Chuck Forget?"

..."With Liberty And Justice For All" hopes to be a guest blogger series by Autistic teen voices against catastrophic violence to their neurodivergent peers that happens when preventable bullying events are ignored and escalate. Autistic Teen Activist Henry Frost leads with this moving post. A version of this article was previously published in Ollibean. kç

Will Chuck Forget?

Chuck is terrified to go to school. He has stuttering. Others laugh when he says something.
 He has a breakdown at school.

Some boys do feel bad but have no courage to tell and stand up for him. The teacher pretends nothing is wrong.

Chuck went missing.


Who is responsible?
What can his friends do if he is found?
What does it mean to watch and look the other way?
Will his teachers take initiative and how?
What can his family do?
Will Chuck forget?

End of  the story.

I wrote this story when I was in Austin with Soma in October 2013. It is part of a book of  stories for discussions.  Two Houses is one of the stories. There is another in Halo’s Voice.

"If you are bullied, tell someone. It is not you who should feel shame. "


Henry Frost

In 2012 Henry faced disability based discrimination when he was denied entry to the middle school across the street from his home. Then 12 year old Henry started “I STAND WITH HENRY” to take action against the segregation and low expectations he encountered and to empower others to stand together and demand full access to equal education in their neighborhoods. Henry’s international social media campaign garnered tens of thousands of supporters and he was allowed entry into his neighborhood school after months of negotiation. Henry went on to excel not only in General Education but it Advanced Honors and Gifted classes.He was the 2013 Recipient of the Autistic Self Advocacy Network's Award for Service to the Self-Advocacy Movement. You can find Henry @istandwithhenry on Facebook and Twitter.