Thursday, May 19, 2016

If I Die: In Memory of Courtney Liltz

"I think an ideology, a dangerous ideology, that preaches that people are better off dead than disabled is what led to Alex Spourdalakis' murder."
Ari Ne'eman

A young Courtney Liltz hugs adoptive mother Bonnie. ©CNN screenshot
Bonnie Liltz was given a reduced charge of manslaughter and sentenced to four years in prison for the premeditated murder of her nonspeaking disabled adopted daughter Courtney.  Courtney was a 28-year-old woman with CP and had a right to survive her mother's potential death. Bonnie's excuse was that she has severe health concerns and did not wish to die and leave Courtney back in an institution where she would receive terrible care.

Bonnie was 19 when she was diagnosed with ovarian cancer. The treatment at that time was basically radiation sickness inducing and Bonnie had devastating health problems ever since. She chose to adopt Courtney, fully aware of Courtney's lifetime support needs as well as her own frail health. During sentencing a parade of family, friends, and neighbors requested leniency. Her attorney repeatedly stated that Bonnie had dedicated herself to Courtney's care and that Courtney's murder was an act of love.


This is such an insult to the hundreds of disabled and chronically ill parents with high support needs who lovingly future plan and parent their own disabled children and keep up with changes in the law that have changed service providing for adults with intense support needs like Courtney. Courtney could have remained in Bonnie's home, the home she knew and grew up with if Bonnie had achieved home ownership. Courtney was adopted by Bonnie at age 5. So in the 23 years that followed, Bonnie, who knew she had a horrific health history and declining health, did not reach out to all these friends and family who are singing her praises in court and come up with the 24-hour nursing and personal care plan Courtney would need after she died? Did no disability service agency explain that Courtney could have the services she needed at home or in the community? The tacit structural ableism rampant in media reporting of these events leaves so many questions unanswered because their narratives leave Courtney erased from both her life and death, her existence defined by her mother as self-sacrificing care providing single-parent, her mother's friends and family relating her mother's struggles, and  her mother's justifications for her murder. Courtney deserves better.

Courtney with mother Bonnie in a holiday photo. Courtney
was murdered by Bonnie June 5,2015  ©Facebook
Why didn't Bonnie, knowing her own health was failing, set Courtney up in a community-based placement of her own with staff to care for her after Courtney's 21st birthday? Why would she just say to herself "If I die, what will happen to Courtney? Well, I'd better kill her then?" Why is it that in so many of these murder-suicide attempts the murderer seems to recover without any real harm but the disabled victim has no chance of survival?

If I die, and any of you, my friends, family, or  colleagues, say "she dedicated her life to that severely disabled son of hers" I will come back as a ghost and kick your collective asses. If you have any love and respect for me in life, do me the service of not cheapening my relationship with my son after my demise. Mustafa deserves better.

Let us make this clear. If I die, the only thing I want anyone saying about me and my son is that I dedicated my life to fighting for my son's right to have autonomy and as much agency in his own life as he can manage. Anything else is dehumanizing to my son, and my son deserves better than to be defined by the idea that I was unpaid support staff for him and I mothered him. He can't become some sort of object of pity in his dead mother's life. If I die, I expect our community to step up and help my husband and adult daughter ensure my son has his human rights to a free and appropriate education, a community-based living placement neither in a group home nor an institution and the supports he needs to thrive after I'm dust in the ground.

The only legacy any parent who is the primary care provider for a nonspeaking disabled person must leave is the memory of their efforts in life to guarantee the survival, autonomy and freedom of that disabled human to live as full a life as possible whether they survive to care for them or not. Everything we do, from their diagnosis day to the last breath we take, must ensure the survival of our offspring. That is what a mother's job is. That is my damn job. It doesn't make me a warrior mother. It doesn't make me superlative. It makes me Mustafa's mother doing my job by him and fighting for his human rights to respect, dignity and access to the same community I fought to live in as a woman of color. 

Murder is not an act of mercy. We must all stop propagating this lie that murdering a severely disabled loved one is an act of mercy simply because so many people are so ignorant of what it means to be disabled that their fear of visible disability drives these horrible thoughts. If you are a parent and have ingested this poison you must expel it from your heart. This ideology that people are better off dead than disabled is a terribly dangerous lie. Part of moving past that toxic culture and towards saving lives is to recognize that everyone has the right to an autonomous life and agency in that life. Courtney's life was hers to live and not her mother's life to take. Mustafa and I fought to bring him into this world and survived. I sure as hell am not going to take the valiant war he has fought to overcome the mountain of obstacles posed by his disabilities and dishonor our joint fight for survival by murdering him simply because I have been told my life may end before his.

Rather than fearing what the future might hold for our offspring help build a world of communities designed to accommodate everyone and stop being afraid to let your disabled children grow up and live an adult life. Imagine what their lives without you will look like and help them make that happen now. STOP KILLING THEM. Bend your collective parental wills and energies to making the world work for them. The ultimate failure in this cycle of violence against disabled adult children by their carers is a systemic one. Bonnie should have been shown that Courtney would not have to survive her death in any institution and Bonnie should have been able to transition Courtney into an autonomous community-based living situation at 21 that Bonnie could have overseen for these 7 years. I would argue that if Bonnie truly loved Courtney as much as everyone said she did, a secure future plan being implemented now for Courtney would have dismissed thoughts of filicide on Bonnie's part and she might have sought professional help for her own wish to end her life, and possibly two lives would have been saved.

What needs to happen is that we must all get to work on the foundational issues that can prevent these murders before they happen. That begins with all of us parents understanding that our deaths are not the end of the world for our severely disabled children. We must act now to ensure they are able to have an excellent quality of life both now and when we leave the world. Fight to save our children's future not to end their lives.

If I die, and my son survives, thrives, and remembers he had a mother who loved him, I know I will have left this earth feeling as if I have achieved paradise. His survival, his growing up to be a man who can exercise his human rights and civil rights and be accepted as he is my only goal. Remember that. Remember the tragedy of Courtney Liltz and the toxic ideology that led to her murder.  Remember Courtney as a woman who is being erased from her own story and don't allow it to happen. Be aware that filicidal and suicidal ideations require professional help. If you hear it, get that parent help. Don't enable it by supporting this ideology on any platform for any reason. Don't stand by and do nothing, then sing the praises of the murderer. Courtney is not better off in Heaven. Courtney is not better off knowing the one person she trusted murdered her. To claim a belief in God and take a life placed on this earth and meant to outlive you means you have no faith that God will protect the life He brought on this earth after you've left it. That is the ultimate in religious hypocrisy.

Justice was nearly undone by those who by their testimony eulogized Bonnie Liltz, and thus erased Courtney Liltz's value as a person with the right to live, decimating her rights as a victim with the right to justice. If we continue to allow this mentality to spread, others will target our children and decide it is okay to end their lives without their consent or our knowledge. So wake up and educate people about your disabled loved one's right to exist. Begin with your own friends, neighbors, and family.

I was leaving the hospital, being wheeled out to my transportation.The LPN, said: "your son is autistic? Wow, that's so sad." I turned in my wheelchair and replied, "Oh? Why?" She was so taken aback that she began with "well, uh, I mean, er, you know.."  I was firm. "My son is brave, resilient, and compassionate. He is also incredibly patient." "So it is not sad. It is an honor to be his mother and be part of his life." We spoke a while longer, and she left thoughtfully reflecting on what we discussed about Mustafa and his value as a person.

Begin by changing the conversation. No exceptions. What is at risk is our children's lives.

Monday, May 9, 2016

The Presumption of Incompetence: When Prophecy Fails

Caution sign with the word ableism in all caps

"Back in the 1950s three social psychologists joined a cult that was predicting the imminent end of the world. Their purpose was to observe the cultists’ response when the world did not, in fact, end on schedule. What they discovered, and described in their classic book, “When Prophecy Fails,” is that the irrefutable failure of a prophecy does not cause true believers — people who have committed themselves to a belief both emotionally and by their life choices — to reconsider. On the contrary, they become even more fervent, and proselytize even harder." 
- Paul Krugman, NYT Op-Ed, "When Prophecy Fails"

I was the victim of a seventh-grade teacher who fervently believed that I should not be a student in her class. She was a white supremacist and a true believer that no one my race should occupy the same physical space as anyone her race. She felt it beneath her to educate me. It didn't matter to her what my academic record was. In her mind, no Black student could ever be as intelligent as a white one. Her racism and my obstinate refusal to yield to it led to an inevitable standoff.

It happened in the girl's bathroom which doubled as the changing room for gym. I needed to relieve myself. She demanded I leave the bathroom stall door open so she could "be sure I wasn't trying to steal something." Finally fed up with the months of harassment, I refused. She denied me the right to enter a stall. There we stood for 15 minutes, my teacher smirking, certain that I would urinate on myself and she would have won by my public humiliation when three classmates, who entered to use the bathroom, walked in on us, teacher and student, simply standing there glaring at one another.
Graduation day for the author, seen at the far left in
an orange gown celebrating with a friend and her friend's
 mom  ©K. Çevik

"What's going on, Kendall?" a particularly bubbly girl asked, sensing the tension in the air and nonplussed. "I was just going to the bathroom, wasn't I?" I said, never taking my eyes off our teacher. Suddenly realizing she could not be seen to keep me from using the bathroom in front of the other students, she snarled "yes" and blushing furiously, left the bathroom.  That day I realized just how wedded to her beliefs this woman was. By the end of the school year, despite her best efforts, I passed the seventh grade. Her passionate insistence that a Black student could not succeed with white peers overturned, she continued to believe nonetheless that Blacks were inferior to whites.  After I graduated from middle school and went on to achieve in high school,  her belief in my race's incompetence continued regardless of the stellar students my color unfortunate enough to enter her classroom after my year of hell breaking that racial barrier was over.

There is an ableist trap that most visibly disabled nonspeaking individuals find themselves in. I call it the nonspeaker's dilemma. Quite simply put, once a person has been assessed to be nonspeaking and intellectually disabled, no matter what that individual does to demonstrate cognitive acuity, the presumption of incompetence is a prophecy that holds such a tight grip on its believers that it is nearly impossible to override. Society is so wedded to the myth that once a person is labeled intellectually disabled that person has no hope of cognitive competence that each generation ingests the presumption of incompetence automatically, unaware they are doing so. The myth has become a subliminal doomsday prophecy of society that lives a parasitic life within too many people who supposedly advocate and care for those who wear the ID label.

The false prophecy presuming incompetence is kept alive in part by the nonprofit industrial complex, which propagates this myth in order to drive the research funding upon which it exacts a percentage to survive. As a result, when a nonspeaking individual who also wears the ID label somehow manages to break through these barriers and  demonstrate the ability to communicate in any way, for example, type independently or with tech support or accommodation for disability, regardless of the method by which this is achieved, they will continue to be presumed incompetent. This is particularly true with nonspeaking autistics.

 The awful reality of this trap is it places nonspeaking disabled people who somehow manage in any way to demonstrate cognitive ability beyond expectations in an untenable position. I am a survivor of the harm done by bigotry-based presumptions of incompetence; I recognized this destructive attitude when my son entered the public school system.
Tech is power. Mustafa holds his AAC device to
communicate while nature watching ©K.Çevik

In the middle of an IEP meaning, when I asked how the team planned to increase executive function in my son throughout his school day, the entire team gaped at me as if I had just revealed I'd arrived from Mars. They were rendered speechless because they defined intellectual disability as profound intellectual incompetence. They believed that our son was in a static state of intellectual disability such that no intervention could increase his cognition or acuity. Now, how does any parent manage to motivate such an IEP team to generate any instructional design that might deliver learning to a student they have deemed incompetent to learn before ever attempting to teach him anything?

Over the years, our son went through several series of tests to gauge his baseline intelligence. At one point in his life, no medical expert had succeeded in getting a baseline intelligence score off him from any battery of assessments. We had arrived for his annual evaluations and another six hour day of intensive assessments. After three hours of refusing to participate or make eye contact with the formidable  doctor trying to test him, our son, age 8, decided enough was enough. He stood up, placed both arms on the doctor's desk, leaned forward, looked the doctor in the eye and retaining eye contact, raised his left hand and slapped the closed door of an office cabinet with the flat of it, hard. Still staring at the doctor, he grinned and sat back down.

At this point, it became quite clear to the good doctor what we already knew. Mu wasn't responding to the test because he didn't feel like being tested. His father was allowed to enter the testing room, at which point the doctor witnessed Mu easily demonstrating a mastery of fine motor skills needed to get an oatmeal cookie he wanted because it was nearly lunchtime and he was hungry. "How can we get him to do that again?" The doctor asked. "It has to make sense to Mustafa or he won't be interested in doing it" his father answered. Once the doctor respected that boundary set by her young patient and allowed his agency in the assessment process, Mu participated in his assessments and she became the first medical expert to get a baseline intelligence result on our son.

Despite witnessing this and direct evidence of Mustafa's mastery of topics like sight words and basic math concepts, experts still concluded that everything Mustafa learned was rote, that they were wrong about his complete lack of ability to retain but this did not prove his competence. They simply assured one another he'd somehow memorized the material, but did not understand it.  Our son will have to present his case for cognitive competence in such a way that it cannot be refuted. He and thousands of others like him will continue to be denied autonomy in their own lives until they are somehow able to prove they are competent to a group of experts and professionals who are such true believers that intelligence in intellectual disability is static that they will never accept the possibility that like intelligence in every human, cognition in those who carry any label can improve and increase with educational enrichment, assistive technology, and proper supports.

Society's belief in intellectual disability equaling incompetence is so strong that even when clearly visible evidence presents itself to override  expectations and the prophecy of intellectual disability equaling incompetence fails, some professionals go beyond simply accepting the myth and become evangelists for the belief that any ID labeled nonspeaking individual is incompetent.

If a series of social psychology experiments were run in which two sets of disabled individuals, (one who types to speak and is a nonspeaking autistic, and one who has a physical disability and can speak but is given an iPad and told to type as if they cannot use verbal speech,) were placed in rooms and medical and education professionals were told that both the nonspeaking autistic person and the individual with physical disability alone had no intellectual disability, and both communicated through typing, they would be treated with equal respect. Because when the intellectual disability label is deleted from the equation, people base their opinions on what they quantify and observe rather than their biased presumptions about any individual. 

This is the largest barrier for my son and his nonspeaking peers. Not incontinence, or behavioral challenges, or health concerns. It is the fundamental prophecy that the label of intellectual disability, when added to their nonverbal state, means a degree of disability so 'severe'  that no effort on their part can prove their competence. This taints their entire lives, robs them of autonomy, destroys potential avenues of funding that could drive research into more efficient Augmentative Assistive Communication technologies and community-based supports and  solutions based on the principles that autonomy and active participation in society are their human rights.

With the understanding that when prophecy fails, and some nonspeaking individual manages to prove themselves competent, it is our task as stakeholders to ensure that the individual is not objectified, treated as unique, or isolated from their nonspeaking peers in any way, we must push on and ensure that it is understood that we do not know enough about how our own brains work to grasp how competent any individual is.  While trying to form ideas on how this ingrained mentality can be countered, I realized something that is being inadvertently done that must not be done.

One way of making sure it is clear that anyone who is nonspeaking and using AAC supports to communicate is doing so on their own is to allow them to write without editing their words. The Amplify Autistic Voices project was an unsuccessful exercise in seeing how many unedited autistic voices could be amplified and accepted as they were. The primary reason for the failure of such a concept was as some of those voices gained popularity and demand for their content on platforms with greater audiences increased, individuals were inadvertently objectified and othered from their peers. Further detriment when gaining a greater stage for these nonspeaking individuals was once larger platforms were given nonspeaking autistic authors' content, their words were handed to editors, 'tweaked', 'refined', and the result was that further down the road, this caused the competence of very accomplished nonspeaking individuals to be questioned.

The road to hell is paved with good intentions.

I'm going to try and explain what I mean with a story that is a perfect illustration of what happens when someone's right to speak in their own voice is tweaked, improved, or edited. I was once a coordinator for interpreters sent to immigration court. One day my manager called me to their office, telling me the DOJ had been contacted by the court in Utah over a new French interpreter. They wanted the interpreter retrained or disqualified. The interpreter, who was a native speaking French immigrant and language professor married to an American, was horrified. "How could the judge question my French?" She demanded. I asked her to go over everything she'd done in court that day without disclosing case information or compromising her client. Half way through her narrative I realized what had gone so horribly wrong. The refugee, an individual who had spent their entire childhood running from violent conflict in their homeland,  was speaking a dialect of French mixed with a local language and had a 5th-grade education. The professor had decided to "correct" the refugee's French errors as she interpreted them so as she put it, 'the court was more able to understand the refugee's plight.' Thank God the individual had other interpreters prior to that hearing. I explained to the professor that it is a court interpreter's job to translate verbatim the voice of the individual not edit, appropriate, or embellish it. In changing a refugee's voice her client went from someone who spoke the colloquial French of their ancestral home to someone who suddenly commanded a university level French vocabulary, she could have caused the refugee to be imprisoned for fraud and misrepresentation of his case to the U.S. Government.

The moral of the story is that the French interpreter came very close to causing irrevocable harm to the client she was supposed to be a conduit of by appropriating her client's voice, acting based upon her presumption of the client's incompetence to 'tweak and improve' his case in court. The prophecy of the presumption of lifetime incompetence for nonspeaking individuals who are made to carry the ID label is similarly perpetuated by two opposing well-intentioned stakeholder groups that harm when they mean to help.

On the professional/service provider end, there are those who cling to the status accompanying their professions as acolytes cling to false prophets.  They wrap themselves so tightly in the prejudices inherent in what science knew about intellectual disability when they were trained that they are unable to entertain the possibility that someone they were taught to believe would be perpetually incompetent must ethically be presumed competent as better assessment methods and assistive technology redefine and expand the meaning of competence and autonomy across neurology. If a professional who has spent a career erasing the agency of competent human beings suddenly learns they have harmed a great many people who they assumed they were helping they must live with the unthinkable guilt of having harmed those they were trained to help. This alternative truth, that a competent individual exists within their disability and rather than spending the resources to reach, teach, and support them those who claim to advocate for them in fact erase them from agency and control in their own lives deals a blow to the validity of many experts that they are unable to accept. This is my hypothesis on why the tremendous emotional investment in a respected professional identity places a person in such an ableist position that they refuse to dismantle any belief that might threaten this even if it means rationalizing away any proof of competence presented to them by a disabled individual seeking respect, autonomy, and a voice in their own lives.

On the parent/carer and ally end, there is the French professor's error in the story above that must be avoided at all costs. The appropriative tweaking and editing of original content written by nonspeaking people that render the end product so unrecognizable from the original draft that the authenticity of their authorship begins to come into question must end. The much voiced but little-understood concept of acceptance requires allowing our nonspeaking disabled colleagues, peers, and loved one's the power inherent in communicating without editing in their voices as much as possible. The cruelest thing that has happened to my son is the ease with which his accomplishments are dismissed as the work of a lesser being somehow taking cues on how to respond from a mother who loves him. We cannot accept this anymore if we wish the kind of genuine progress needed to end the propagation of the presumption of incompetence.

We all must continue reassessing and ameliorating our own structural ableism and not become a barrier to our disabled loved one's autonomy.  If we don't begin with self-examination and self-correction, at best we will be in the position of those three social psychologists, helpless observers chronicling the unfolding of true believers in the myth of presumption of incompetence, stuck on the sidelines watching them spouting doomsday prophecies well after disabled nonspeaking people present evidence that such prophecies have failed.


Dedicated to our son, Mustafa, his hard-fought autism war to be heard, believed, and respected as he is, and my husband Nuri, who exhausts himself to give his wife and son the opportunity to keep fighting on.

Wednesday, April 20, 2016

Autism Month Essays: The Price of Erasure

Harriet Tubman,  By artist H. Seymour Squyer, 1848-18 Dec 1905
National Portrait Gallery, Public Doman,
According to POLITICO, "Treasury Secretary Jack Lew on Wednesday will announce plans to both keep Alexander Hamilton on the front of the $10 bill and to knock Andrew Jackson off the front of the $20 in favor of Harriet Tubman." 

If this is true, it is a huge lost opportunity for a tremendous victory in the disability rights community's fight for representation and the presumption of competence.

If this is true, despite the erasure of neurodivergent people of color from histories of autism and disability studies textbooks , it is a victory for intersected disability rights activists because Ms. Tubman was neurodivergent, the result of repeated beatings and catastrophic head trauma while enslaved. Consider that her best civil rights work was done after becoming neurodivergent and what I mean becomes apparent. Harriet Tubman is the textbook historical example justifying the argument for the presumption of competence.
This dual situation of loss and gain is a typical example of why I began to write constantly about racial injustice within our community, particularly on the damage done by erasing neurodivergent people of color from histories of autism. Does everyone feel the price of erasure now? So much gaslighting has been done on how whitewashing must be accepted by those of us who are not white in order to present these histories to fragile white audiences that this incredible opportunity to move from reading about a neurodivergent historical figure in a recent history to lobbying in support of representation for all neurodivergent people was squandered by the very act of allowing our own activists to accept the erasure of Ms. Tubman's disabled Black identity, perpetuating structural racism among our own movements and organizations. It could have had the lobbying power that Lin-Manuel Miranda's voice had on the heels of a triumphant broadway production of Hamilton, personally reaching out to Lew to keep Hamilton on the $10 bill. No monumental opportunity some best-selling history of neurodiversity followed by a powerful voice for Harriet Tubman's face on U.S. currency will ever happen.That ship has sailed.
What is the benefit of editing out the voices of people so powerful to disability rights representation that their places in history have overcome the standard erasure endemic to their race and origin? How does this erasure from histories benefit the fight for my son's right to equal representation as a brown autistic teen?
Ah, the irony of the victory and failure of this series of events! Anyone grasping this after I've pointed it out should know that Ms. Tubman's neurodivergence, which was described very much with the same symptomology as today's TBI-induced autism, should have merited a mention in histories of autism. Those activists who aggressively insisted I was overreacting to the new slew of histories of autism and critical disabilities studies books that perpetuate the same erasure can now see where this kind of gaslighting leads. Neurodivergent Black people existed and mattered at periods in history when my race was made into chattel in this country. They played major roles in our nation's history and in the histories of human rights movements for centuries.
But all of these enablers of erasure can keep worshipping at the temple of white-washed histories only acceptable when written by white people and call themselves disability rights activists.
Here are the choices. Stew in the hypocrisy of fighting for disability rights while denying the rights of disabled people who aren't white. Or, when looking in the mirror becomes difficult, maybe try giving nonwhite disabled voices equal platforms along with their rightful places in history. 
Hopefully, this can be more than a token victory or appropriation of Ms. Tubman's life, objectifying her while silencing her neurodivergent black peers.

About Harriet Tubman, Civil Rights Activist
About Tubman replacing Jackson on $10 bill
About the erasure of Black Autistics from Histories of Autism

Monday, April 11, 2016

Autism Month Essays: What is Wrong With This Picture?

Google Glass
By Dan Leveille (danlev on Wikimedia) - Own work, CC BY-SA 3.0,
A very large failing in the autism conversation is inherent in the way things about autism are presented. Regardless of the merits of the content, the way it is presented to the public feeds a cycle of structural ableism and structural racism that do great harm even when the content itself appears positive.

A KQED Science news article is a typical example of how structural ableism and structural racism are perpetuated in a brief news post. Even a cursory look at the article makes this apparent.

The title of the article is "Google Glass Flopped. But Kids With Autism Are Using It to Learn Emotions." The reader is immediately hit with a trope about autism that is ableist and incorrect. The title is misleading and sets the tone for the way the content is presented.
The presentation implies that:

a. Autism is an illness rather than a disability which is false; b. The use of "kids with autism" implies person-first language is accepted by the entire autism community which is false; c. Autism is prevalent exclusively in children, reinforcing the trope that autism did not exist until recently which is false; d. Children with autism don't know what emotions are and must, therefore, learn them which is false.

 Rather than including a discussion of prosopagnosia, a form of visual agnosia characterized by an inability to recognize faces, and the fact that a vast majority of autistic people have some form of this condition, and rather than approaching the research of Google glass as potential assistive technology to help individuals with prosopagnosia recognize greater detail in faces and thereby recognize changes in expression, the way this study is presented in this article pathologizes autism, and displays the study as a way to teach autistic people human emotion, something they already know. Foundational misunderstandings that parents and family members harbor towards their autistic loved ones stem from the promotion of these stereotypes about autism. The exclusion of what impact conditions like prosopagnosia, synesthesia, and auditory processing disorder, can have on how an autistic individual of any age interacts with others and how those conditions are improved by Google glass is also critically omitted from the article.

No attempt at defining for the reading public why autistic people don't make eye contact is done. Increased eye contact is simply lauded as an improvement in the symptoms of  autism as a medical ailment. Having lived in societies where making direct eye contact can be seen as rude, invasive, and a sign of promiscuity, I find the issue of eye contact not being addressed in general, and how much eye contact is appropriate by culture not being addressed in particular,  rather sad.

A deadly disservice is done when research on how to implement assistive technology is focused on autistic children alone. This implies that autistic adults somehow can't benefit from new supports and assistive technologies. When research focus is only on autistic children with verbal speech it is a devastating disservice to nonspeaking autistic populations who might benefit from the same assistive tech. When a piece of research is presented as if the sole focus is children who are well off and white it perpetuates the myth that autistic children are exclusively white, upper middle class, and geeky people who have social skills challenges. This increases the likelihood of continuing a cycle of misdiagnosis of autistic children of color that denies them supports in education, health, and assistive technology. This continues a cycle that results in the appearance of autistic children of color presented as "more severe" than their white peers.  It is a perpetuation of racism and ethnic bias in autism research and the autism conversation.

The presentation of this research in the KQED Science article as a tool for potential home based therapy for learning emotion rather assistive technology to help autistic people differentiate emotions they already have and know in the people around them is ableist promotes the trope of the autistic child lacking a piece of what makes us human. The damage in presenting autistic people in general and autistic children in particular as lacking or incapable of emotion can lead to life-threatening situations and irreparable harm in the name of  therapy, education, and behavioral support.  It can change attitudes in care providers that increase the potential for harm to vulnerable autistic children and adults needing intensive supports. How information is presented matters just as much as the content itself. Especially when how something is presented can mean a complete shift in how an autistic child is perceived to be by our society as a whole.

The most critical part of this study, an elephant in the room of the autism conversation, is that this study was conducted in Silicon valley. The discussion of wide dissemination of Google Glass for autistic children as an assistive technology tool is an insult to middle to low-income families and autistic adults who might benefit from them. The glasses are a whopping $1,500, and this excludes the monetization of any app the glasses would be paired with for therapy. Even if the cost of production dropped to between $299 and $500, expecting families to afford this when they cannot even afford basic communication devices, additional therapies or in-home supports critical for their children's ability to thrive as adults insults. The conversation in autism policy continues to be driven by the rich and those with power and privilege. The irony that this study could have been conducted collaboratively in a classroom population of title 1 school autistic children in Oakland is not lost on me. Why did the research team choose to ask for volunteers for phase 2 of this study when study candidates could be gleaned from the greater autism community in such a way that full inclusion could be achieved?

If the transformative change in assistive technology available to the autistic population is really meant for all, then research policy must dictate that funding allotted to such research include the entire autistic population across economic communities, across ages, and across degrees of disability.

Until that happens, it should be understood that what is being read as research content much of the time is a method of repackaging an ableist presentation of autism research; an extension of structural ableism and discrimination driven by negative tropes embedded in public policies on autism and how the public is asked to view it.

No inclusion in society will be possible until these disparities in the way research is conducted and information about the research distributed are addressed.

Saturday, April 2, 2016

Autism Month Essays: Who Cares What Causes Autism?

Mustafa N. Cevik asleep at a public library @Kerima Cevik
I have this rather unusual skill set, a result of a fairly odd life. One skill was learned when I was a freshman in college. One of my professors was a research psychologist. After I got top marks in his Psychology 100 course, he appealed to my university to allow me to take a 400 level psych course with a lab. His goal was to get me motivated to change my major to research psychology. During that second semester of college, I learned how to read and analyze research papers. This professor was a speed reader, a talent he tried to encourage in us. He could blaze his way through the latest issue of Scientific American and tell you what was woo and what was not in less than a half hour. Bear in mind this was before the time of the Internet and instant global access to research papers across all disciplines.

I never pursued research psychology. I thought to be able to review research papers a rather superfluous skill until my son was diagnosed a multiply disabled nonspeaking autistic. My husband was working at Johns Hopkins then, and when Kennedy Krieger failed to provide enough answers I began to dig into the research with a passionate determination to find answers. My old psych. professor would have been proud. Though I'm no speed reader, I separated the woo from the valid stuff pretty well. And my was there a lot of woo. 

This reading of research papers led me to seek evidence-based sites on autism. Along with that need, I wanted to find sites that presented a humane approach to autism.  I began to read blogs like Left Brain Right BrainThe Joy of Autism, the original Autism Diva, who was an academic (someone else appropriated the name and is using it now sadly), Kristina Chew's posts on Care 2 and what is now We Go With Him (her son Charles was so much like my son), and all that lead me to a now-archived site called

Mustafa at age 5, in his wheels, waiting for the school bus @Kerima Cevik
I had tried to plow my way through sites like Age of Autism. They were so depressive that I could not read more than a few paragraphs before deciding all that was just not good for our family. The general theme at the time seemed to be a centralized location for parents to vent about how awful life with their autistic children was, that vaccines were the cause of it all, graphic descriptions of  their children's private health-related crises and episodes, and how brave they all  were for bearing up under the strain. 

I think my abhorrence  for AoA was exacerbated because I'd had a horrible encounter with an autism service dog provider who was all for our family coming up to Northern Virginia to match our son with a good dog and train them to work together until she learned his name was Mustafa. From that moment on it was one insult after another in a torrent of Islamophobic ignorance until fed up, I told her a five-year-old United States citizen who was both nonspeaking and multiply disabled was not a terrorist and hung up on her.  In frustration, I wondered if I could train a rescue dog on my own. Had anyone trained an autism service dog on their own? Finally, I came across an article by someone named Jim Sinclair, an autistic educator who explained how to train a service dog on one's own. That is how I found Sinclair's essays  "Why I Dislike Person First Language," and  "Don't Mourn For Us." I learned that the latter essay had been read at a conference in Canada.
Mustafa at age 9, representing The Baltimore Ravens ©K.Cevik

While I tried to decide whether we could even afford to maintain a service dog, and how I would have the time to train a dog and meet our son's intense support needs, we, like many families of color, learned that when your loved one is nonspeaking and disabled, those with power over them in schools can harm with impunity and without consequences unless said abuse is caught on camera. 

Sometime in 2008, I heard this young autistic college student say "who cares what causes autism?"  during an interview and I felt slapped. What the hell did he mean, who cares? I think it was during an interview on Good Morning America. I was so annoyed then that to this day I can't recall for certain. I read one of several other interviews with him to my husband, a habit of news reading we both do to help one another keep up with things while attending our son. 

Seriously, what did he mean who cares? Cheeky young upstart! But my husband said at least he wasn't acting like autism was the bane of existence and our son would be some useless sack of potatoes we were going to carry on our backs the rest of our lives. At least someone was saying something that wasn't negative. Of course, we were certain he had no clue about our day to day lives as parents of multiply disabled autistic children. Let him fight the IEP teams and the bigots, the Islamophobia and the school bullies and take the kick to my stomach my little son inadvertently landed when the mall overwhelmed him and I was fighting to get him out of there and into a calmer place as quickly as possible. 

So whenever we ran across this guy in the media going on about autistic voices, I was skeptical but did try actually listening to what he said. "Nothing about us without us?" Well, I agreed with that part. But he could speak, read write, eloquently.  Our son could not.

Who cares what causes autism?

Later we heard the cheeky upstart was nominated to be the first openly autistic member of the National Council on Disabilities.  Apparently this young man was attending college in Maryland all this time. I'd never met him. What we thought was "good for him." But we didn't see how that would help our son. They were very unlike, weren't they? We thought meh. Different diagnoses. This Mr. Ne'eman had a dx of Asperger's Syndrome.  He wouldn't care about our son enough to drive the policy changes he really needed. Nope, we were still alone against the world, our son and us. 

Who cares what causes autism?

See the truth was research on autism all this time was aimed not at understanding why our son was unable to use verbal speech, or why he had a sleep cycle disorder, or a very weak immune system, or chronic intractable skin rashes and IBS that no one seemed to be able to determine the cause of. The research didn't find more accurate ways to measure intelligence in nonverbal individuals. There was no effort to develop an auditory processing assessment scale for nonverbal autistic children and adults. There was no way of testing our son for facial agnosia but therapists were demanding he look them in the eye.

 The research was all aimed at finding a genetic marker to autism that could allow a test to be administered that would effectively obliterate future generations of autistic children before they were born by letting parents know they were carrying an autistic child and giving them the option to terminate the pregnancy. That along with research toward drugs that reduced overt behaviors that might mark an individual as autistic was where the money was going. No research was being done that would improve our son's quality of life. A great deal of effort was being made to generate drugs that might provide degrees of chemical restraint and compliance for autistic children with behavioral challenges. Obscene quantities of research funding were being used to determine whether there was a link between vaccines and autism.

Who cares what causes autism?

Through a series of events, I ended up meeting the cheeky young upstart. The day we met in person there was no doubt he was autistic. As he walked away from me with a gait very similar to my son's, I realized this clearly. I next saw him at an event attended by other autistic adults. When autistic adults are together in a great group, they relax. When they relax, their concern for one another, their mutual understanding of one another's challenges and support needs, that empathy that is uniquely autistic, is apparent. No one needs to present themselves as someone they are not in those moments, and I became aware that I was given a great gift that most autism parents should be given. Maybe some of you believe that you've seen a gathering of many autistic people. Not like this.

Who cares what causes autism?

Most gatherings of autistic young adults and adults are run and controlled by parents, service providers, and organizations who wish to provide spaces for autistic youth to practice normalcy and social skills. So even events billed as recreational are actually treated as passive therapy and "passing" opportunities. Parents judge other people's offspring during these events by how distinguishable they are from their peers. The more blatantly divergent a child is, the more "help" they are still thought to be in need of and the pity and condescension are felt by those young people. Trust me. Some parents even thoughtlessly shame other parents by demanding function labels to see who is more 'severe,' whose children may not have won the chess tournament, or whose offspring are unable to stop stimming.  That is not the kind of autistic gathering I mean.

This event was so very not that.
Flyer for the event at Georgetown U. reads"Autistic
Empowerment: The Civil Rights Model ©Lydia Brown

Autistics shared coping strategies, new technologies, and problem solved for one another before and after the event. I was part of a panel of speakers and one of the speakers, Hope Block, was a nonspeaking autistic, like my son, and typed to communicate. I had the honor of having Ms. Block seated to my left and Ari Ne'eman, the cheeky upstart, to my right. When Lydia Brown asked if I would like to participate in an event they were organizing I had no clear idea that was going to happen. When it was all over, I turned to my left and thanked Hope for being there representing my son. She locked eyes with me and hugged me. I was overwhelmed. There was so much caring during that panel. This is a single example of one of the many reasons I get so frustrated with people declaring autistics lack empathy. Empathy requires this care and concern something that was front and center throughout that evening. 

Who cares what causes autism?

Eventually, there came a day that Ari Ne'eman met my son. It wasn't a good day for my son. At all. But Ari did something that day very few people had in my son's entire life. He introduced himself as he would to anyone my son's age. He shook our son's hand. 
Mustafa Cevik, large and in charge, in his wheelchair at
his big sister's graduation, age 12. @C.Nuri Cevik

Most people who meet our son are intimidated by the combination of his nonwhite identity, his visible neurodivergence, and his size. Our son is a body language reader. He senses their fear and in response believes there is something to fear and therefore becomes shy, then nervous, then agitated. Ignorant people, upon meeting him, have had the nerve to ask how I can be homeschooling and managing our son without help. They never realize the obvious; he isn't hard to manage at home. And this implies that our son is actually not as others perceive him when they see him for an instant in time, or when his incredible patience has worn thin. He is more than what he appears. I don't believe a single author of  recent histories on autism could manage to engage Mustafa long enough for a handshake much less communication. He doesn't like being touched unless he initiates the handshake. He is at times painfully shy and always unsure when first meeting someone. He has learned the hard way that people can't be trusted. Yet he shook Ari's hand. Only two other people managed a response from our son that day and one of those two was a petite autistic woman.

Who cares what causes autism?

Sometime after all these events, I realized that the types of research papers I was reading changed. The trips I was taking to Annapolis had a different purpose. I am not certain of the moment when the cause of our son's autism ceased to matter to me. I don't know when top priority became making sure that our son had the same rights in our society that everyone else did. I wanted my son to get the education he deserved. I can't recall when I said to myself that I didn't want any more teachers educating him who had so little regard for him that they'd say "oh who cares if he missed a trip to the pumpkin patch, they don't remember anything anyway." as his preschool teacher did. When was the instant I said my son deserved better than that? I think it came when I knew my son remembered every single place he'd ever been and ever single thing he'd ever done. I knew this from his reactions when we were on our way to those places. He knew where to go, even when I, who have a terrible sense of direction, did not. 

At some critical moment, I left the blame game behind. I just couldn't accept the myths being put before me about how I should view autism and therefore how I should think about my son.
I couldn't mourn for his loss when he was right there with us. No one took him from us, no one kidnapped him. He's a really cool dude that so many people are uncomfortable with because he can't hide his neurology. No one takes the time to try and get to know or understand him. That was the reality I lifted out of the woo of all the autism rhetoric of the past to reach this moment. Our son was here, lived, was and is loved, deserved to be respected.

Who cares what causes autism?

Can you understand what Ari Ne'eman meant in that interview? I don't care what caused our son to be born divergent. I care about helping him by ensuring he has the best quality of life he can achieve. I want to help him be as autonomous as possible. I don't believe the myth that my son's life is forfeit and several levels of hell await him should I die any more than I would for my grown daughter who does not carry his disability labels. We went from hopelessness and people screaming "mourn him" and "cure him" at us to understanding that once all that wasted energy was freed, we could focus on truly helping our son. 

Who cares what causes autism?   

I don't. It's an incredibly joyful and liberating place to be. Join me.

Searching for autism blogs: 

Jim Sinclair's Don't Mourn for Us

Concurrent topics in the autism conversation:
Identity First Language:
Jim Sinclair
Lydia Brown at Autistic Hoya's posts are on Identity first are also excellent: 
Prosopagnosia/Facial Agnosia
Unstrange Mind's Sparrow Rose Jones'  excellent post on Non24

Back in the day, on Ari Ne'eman:

Saturday, March 12, 2016

On The Murder of Cynthia Busch

Image of Dr. Martin Luther King with the following quoted words: "We must be concerned not merely about who murdered them, but about the system, the way of life, the philosophy which produced the murderers. " - MLK Jr., Eulogy for the Martyred Children (1963) 
On March 10, 2016, 24-year-old Cynthia Busch was shot to death by her mother, Barbara Busch, on the couch in their basement. Ms. Busch then turned the gun on herself.

The Fairfield Twp Department of Developmental Disabilities did not respond when asked if they had visited the family recently.

Because I am one of literally thousands of parents globally who care for children with intense support needs with no respite except his father, and I'm fortunate enough to network globally with other parent care providers in countries with fewer supports and services than we have here, who are overwhelmed, exhausted, and go through cycles of depression, I can't tell you how angry I am when with one glance at the disabled victim any public entity reporting a crime concludes that this act occurred because the murderer was tired of caring for the victim.  Leading with this excuse for murder is an insult to all of us out here loving our children and doing our best to care for them regardless of adversity. It is an insult to all those care providers who lovingly care for their clients though full lives. Most importantly it is an insult to people like my son, a kind and courageous human being in his own right, and all those neurodivergent people who deserve better than to be thought of as burdens on care providers.  It sends the wrong kind of message. It functions as a passive form of enabling people to absolve those who commit this most heinous crime as if it is a legitimate excusable act. Then, like 6-year-old London McCabe's mother Jillian, people think it is okay to premeditate and murder their neurodivergent children.

No one should project personal ableist feelings about what it is like to care for disabled offspring when learning about a victim's disabilities. If parents love their children they ensure those children have an avenue of care after they are gone or when they realize they are no longer able to care for them alone. Barbara Busch had a boyfriend, friends, and neighbors who knew her and Cynthia for over 15 years. And yet they did not help her transition Cynthia to a safe place to be cared for and help her to seek professional support for clinical depression? Parents who love their disabled offspring don't murder them.  Bullet wounds are a painful way to die. You don't shoot someone you love! There was no love or mercy involved in this crime. Responsible community reporting demands that it be made clear that murdering a severely disabled person is neither an act of love or an act of mercy.

This perverse slant on reporting her murder erased Cynthia Busch's 24 years of life  by making her scenery in her own murder. Worse, her existence as a disabled person with intense needs was presented as the implied cause of her own death.  What actually happened to Cynthia Busch was a variant of domestic violence. Let us all consider looking at things from this perspective for a moment. Over a year ago my family moved out of a county here known for ridiculously high rates of domestic violence-related murders. A man in that county recently confessed to  shooting the mother of his child, a beloved elementary school teacher, and their two-year-old child to death.  No one anywhere looked and the lifeless body of the toddler and reported, "well clearly the child support...just looking at the challenge of dealing with a toddler... he was clearly overwhelmed." We would all be horrified if anyone in journalism, law enforcement, social services, any neighbors or friends of the victims said anything of the sort to apologize for the obscene crime committed.

Why is it okay to report murders of disabled victims with headlines like "PD: Fairfield woman killed adult daughter, self because she was tired of caring for daughter (Barbara Busch must have been overwhelmed)?"
©WCPO Cincinnati news headline screenshot
What if Cynthia wanted to live and was unable to express this? What if she loved her life as she was living it and was happy in her life? Does it take that possibility to make readers feel that the murder was more unjust and horrific? There are countless disabled adults who write, blog, speak, and have books about spending years of their lives without being able to communicate while understanding everything that occurred around them. Martin Pistorius is a prime example. He heard his mother say to him one day "I hope you die." She regrets that she said it now, and regrets more that he had become so objectified in her eyes that she believed he could not hear or understand what she was saying to him. Had a caring, observant nurse not insisted Martin's parents get him re-accessed and had his mother not put assistive technology to communicate within his reach, he would still be trapped in his own body without a voice in his own life. Instead, he is working, married, happy. We will never know what Cynthia could have accomplished. Because even in death, her personhood is dismissed. The injustice of this should enrage us all.

The police investigation concluded the murderer was overwhelmed. Did the neighbors think well she must have thought it through and decided this was for the best? Really?

1. Please stop enabling people by passively saying when people kill their loved ones it is understandable if they are severely disabled because the care for disabled victims overwhelmed the murderer. 

2. Treat 24-year-old domestic violence murder victims like adult victims of murder by an abusive perpetrator. Investigate this as if this victim were the most beautiful woman in the world with everything to live for, and her life was snatched away from her because that is the reality here.

3. Report on how the murder victim ended up in harms way. If the carer's boyfriend, neighbors, and the DDA knew her state of mind and level of fatigue, why was nothing done to help Cynthia receive care from an alternate provider until her mother was in a better headspace? 

4. How did the police reach the conclusion that the reason for Barbara's murder of Cynthia was because she was tired of caring for her? 

5.  Seek true causation by asking the right question: Why is this happening with intellectually disabled adults and children so much?

The answer to these questions might prevent another murder.

Each life has meaning and Cynthia's life should have been hers to live to the best of her ability. Life is not a privilege based upon how able one is or how one can live it independent of others' care and support. We depend on strangers every day. We put our lives in their hands. Remember the suicidal young pilot who flew a plane into a mountain with passengers on it? We all recoiled from the wrongness of that. We didn't say, "he was tired of flying" or "he was overwhelmed." Everyone began demanding airlines globally do something to insure that all pilots be verified to be fit to fly airplanes without deliberately crashing them to kill the passengers onboard them.

Cynthia put her faith in the mother who brought her into this world and cared for her all her life. Barbara Busch did not call 911 and say "I am a danger to myself and my disabled daughter. I am overwhelmed." She chose to commit a violent act, and in doing so violated that trust in the same way Andreas Lubitz chose to harm others and himself. The passengers on  Germanwings Flight 9525 had the same value as Cynthia Busch did. All had an equal right to live.

When we understand that, we can end this cycle of murder-suicides.

One last thing. Call things what they are. However wonderful Barbara Busch's care providing and mothering skills were prior to this event, shooting Cynthia Busch was cold-blooded murder.

The Murder of Cynthia Busch

The Murder of London McCabe

Ghost Boy: The Story Of Martin Pistorius

The Deliberate Crash of Germanwings Flight 9525

The Murders of Elementary school teacher Neshante Alesha Davis, 26, and her two-year-old daughter, Chloe Nichole Davis-Green

Resources to help save lives permanently on my blog: