AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

The author's idea of what supporting autism positivity looks like:
Image of a Black woman over 50 with braided gray hair wearing
a Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe
design on the upper chest area in the shape of a human brain,
colored in physical map fashion i.e., water is colored light blue
and land masses green, clouds white, looking to her left
over bent wire-rimmed glasses in that way that mothers look at
their children when an outrageous behavior has just ensued

There is an article in a paper called The Daily Net, about singer Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was 13 Ms. Braxton was told he no longer met the criteria for autism. According to this article, she goes on to say:

“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism. 

This is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism treatments is a misnomer that confuses parents.  These interventions do not cure autism. They suppress visible signs of neurodivergent minds forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them such that they blend in with nonautistic peers. 

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors may later manifest  in "formerly autistic" adults as mental health challenges and PTSD. 

A parental declaration tantamount to a demand that Diezel should not display any sign that he is autistic has been issued for public consumption from a mother who has no understanding of being autistic except to view her son's brain as an enemy he must fight and defeat. Is telling your adult son to hate his own brain and how it works a good thing? This sounds more like the very definition of how internalized ableism happens. 

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic.

 Presumption of a cure because the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health and other supports they may need to access going forward. 

It is truly harmful to hold up an autistic teen and call him formerly autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life or save it. 

He is the son of a celebrity so his life at this moment might appear significantly better than his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community and wrong.

This type of rhetoric, along with parading her teen son around as inspiration porn could have other parents exerting increased pressure on their own offspring to be "formerly autistic" and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic it could irrevocably harm them. 

The author's idea of an autism positive autistic male
model. With permission from Mu, and yes,
we have matching Neurodiversity 3.0 t-shirts.
He is wearing his, bought deliberately large
because the collar would disturb him otherwise.
The photo matters because it defies professional
assessments of his degree of disability.
He is facing me while I'm photographing him,
he's looking right at me, and he's sending a
kiss in my direction. Image of
a multiracial teen with curly hair
at a table in a black t-shirt with a
drawing of a human brain
colored to look like a physical map of the world
with the word Neurodiversity in all caps
and green lettering beneath it.
A refrigerator can be seen in the background as
can parts of a sitting room behind him. © Kerima Cevik  

The crushing element of structural ableism which breeds internalized ableism when nurtured by this type of parental gaslighting may have emotional consequences at a later time in Diezel's life and that truly concerns me.  His mother clearly hates the autism label and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia or auditory processing disorders? Has he been tested for EDS?  These are parts of the autism label that are rarely tested for or addressed in African American autistic populations. 

As African Americans, we are forced to code switch, to suppress African American Vernacular English and cultural differences that make us who we are, unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as either entertainment or something less than acceptable. It is still a major issue when natural hair is worn to school or work. It is still a risk when AAVE is used in traditional work settings or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity and her wrongheaded understanding of autism have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

She has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated rather than as a lifelong disability and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back when her intention appears to be to give our people some sort of hope and inspiration. 

It is time to make these things clear and speak up for the sake of so many autistic young adults and teens who live with self-loathing because of celebrity autism parents inadvertently gaslighting the attitude in them that those things that make them autistic must be code switched off, suppressed, and who they really are must be hidden away. 

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic, it is the way every layer of society bakes ableism into the structure of autistic lives such that from childhood to adolescence it becomes internalized and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children and the entire autism community. 

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior and the damage it is doing. What we can all do is recognize this and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities instead of peer-reviewed factual knowledge of what autism is and how we can facilitate a better life for our children. 

Mustafa's Dilemma

Mustafa N. Çevik Garibaldi, reading on our deck ©Mrs. Kerima Çevik

Arnaldo Eliud Rios Soto, the 26-year-old autistic man sitting on the pavement with a toy truck in shock in a viral video could be our son. Arnaldo sat beside Charles Kinsey, his trusted aid, helpless while Kinsey was lying on his back with his hands up, shot, with Miami police surrounding both men 50 feet away.

Our son Mustafa has so many similarities to Arnaldo that several people who know our family and have seen Mustafa in person remarked on how much Arnaldo looked like an older version of our son. Like Arnaldo, Mustafa is labeled Hispanic in ethnicity, has an equally lengthy name and heritage, carries the same disability labels although my son carries additional labels to nonspeaking autism and the added stigma of reactions to his name, given in honor of Mustafa Kemal Ataturk and Mustafa's father's grandfather. My son's skin is a tan hue that when combined with his curly hair makes it clear he is not what is considered "white" particularly when he is beside me, his Black, Hispanic, Indigenous mother. Like Arnaldo, he loves toy trucks, cars, and construction vehicles. Like Arnaldo, if a series of sirens sounded around him, and men 50 feet away began to shout at him, he would sit where he was, and hold to one of the objects that never leaves his hand because they provide him sensory calm in a world of violent, changing sensory overloads. Mustafa is Arnaldo's peer. Arnaldo's traumatic event, is Mustafa's dilemma, a potentially disastrous event I have fought to find a way to avert since February 27, 2009, the day I was told my son disappeared from the most restricted public school environment.

That story still hurts, and I've already spoken of it in bits and pieces like the essay "Afterlife ." Suffice it to say that amber alerts weren't created for missing autistic children. And no amount of police training prevents police who want to believe they need to shoot your disabled son or daughter from taking aim and firing.  If the chew tube in your daughter's hand looks like a knife to them, police will shoot to kill first and apologize later even when equipped with tasers and training certificates in autism and disability awareness.

Mustafa's dilemma should not exist. His choices should not be to either never be active in his own community or become a target by wanting to participate in it. People ask, as more autistic males of color like Arnaldo Soto and Tario Anderson are traumatized and more Black autistic young men like Paul Childs die, what can be done. I have been researching the same question since I learned brothers Lance and Ronald Madison  were shot for sport on Danziger bridge while Lance was trying to walk Ronald safely out of New Orleans after Hurricane Katrina. Those police officers, who pleaded guilty and were convicted of killing Ronald Madison, had their convictions overturned and were later released.

Arnaldo Rios Soto ©Miami Herald

The answer to Mustafa's dilemma is not to retaliate against innocent police officers or paint all police as evil. Nor is it to erase these continuing catastrophic events in the name of preserving the public image of law enforcement while these deaths and traumatic events continue to escalate.  But the answer does lie in understanding that it is the solemn duty of law enforcement to lead the reform of a culture that does not hold racist, ableist, and corrupt officers accountable for the mounting deaths and injuries of those vulnerable citizens they engage while on or off duty. I keep waiting for them to step up and disavow coverups and punish those who do wrong. Being a police officer does not and should not equal an exemption from the rule of law. Police leadership in other places has shown that proper police culture builds community trust, reduces risks to both vulnerable citizens and law enforcement officers while decreasing crime. Yet disabled victims, in particular, continue to be blamed for their own deaths, and lack of compliance or erratic behavior are always put forth as the evidence justifying the executions. What Arnaldo witnessed, what we all learned witnessing Charles Kinsey's shooting is very basic to my position that law enforcement autism awareness training alone is failing:

1. Complete compliance and appropriate behavior make no difference to outcomes. 
2. Lack of community training and the resentment of witnessing neurodivergent people included in communities was directly responsible for Charles Kinsey's shooting and similar catastrophic encounters but is being ignored in the lessons learned of each of these deadly events, 
3. The trigger that sets the stage for the catastrophes is inaccurate or deliberately false 911 calls using three code words: black, male, and weapon. All other parts of the call, words like suicidal, or 'toy' before 'gun,' don't matter. 

Why have organizational toolkits, rhetoric, photo ops with powerful lawmakers and law enforcement authorities, autism parents who are law enforcement officers training fellow police, and parents with autistic adult offspring rushing to don the "autism expert trainer" mantle failed to stem the tide of harm washing over disabled people of color?

A. Everyone has skewed the root cause of the problem. Because the problem is misdefined everyone addresses the wrong areas to solve it. Everyone wants to make the solution a need to train police. Catastrophic encounters with police are an outcome symptomatic of the problem, not the problem itself. What people and organizations are doing is very much like seeing people dying in car accidents because of a manufacturing problem that causes brake failure and blaming it on the car's driver. Elaborate solutions are found for improving driving ability, knowing drivers are not the root issue. Cameras record trip data, engines won't start without seat belts, but the problem is the faulty brakes on certain cars, and everyone wonders, as those selling flawed solutions profit by them, why people continue to die. Neurodivergent people cannot continue to be the drivers blamed for the damaged system that is causing their deaths and traumatizing them.

Danziger Bridge, where Ronald Madison and his brother were shot by
New Orleans Police during a shooting spree after Hurricane Katrina
©CNN

Policing is a community effort. Therefore, the primary route to defining the root cause of catastrophic encounters with law enforcement does not begin at what happens when a police officer meets a nonspeaking autistic person. It begins with asking questions like why, if everyone in Arnaldo's group home was known to the community, a citizen of that community would make a false report to 911 that would deploy armed police to an area where there was no gunman. It continues with why the caller isn't being charged with filing a false police report. Because the community knows the group home, and they know the route taken by group home clients and their care providers when walking. So when we look at each of these incidents, the root cause begins with why police were summoned in the first place, what information they were given, and whether the situation required police, guns, and violent endings.

While everyone is lining up to train police departments, no one is training communities to understand and accept neurodivergent community members. Policing is community dependent. Yet no one builds any community to support and include vulnerable community members. Oh everyone has something to say about this, but most never address this because again, we defined the wrong problem, and we are continuing to train police while our people continue to die and become traumatized.

Life qualitatively improves for everyone when communities act to truly include and support neurodivergent people .   The city of Matsudo, near Tokyo, has built a dementia inclusive community and saved dozens of lives and police resources in the process. Their approach is a potential global model for rebooting communities who must learn to include neurodivergent citizens as  the rights to autonomy and community living become as commonplace as they are just.

B. Correctly define the root problem, then make workable multidisciplinary solutions at the community and legislative levels. Having now accurately defined catastrophic encounters with police as the end result of the problem and not the problem itself, let's try to state the actual problem clearly. The problem is that communities are uneducated and unaware of how to deal with neurodivergent members exercising their right to active inclusion. Uneducated and unaware communities mean public entities like schools and public access areas as well as those public servants charged with administrating and maintaining them. Structural ableism then intersects with structural racism (and in our son's case, structural Islamophobia) and the toxic result is Mustafa's dilemma. I've stated multidisciplinary solutions in prior articles and interviews. Those proposals include suggested programs to help build peer-run respite centers for those with a psychiatric disability to recover from moments of crises and receive training in interdependence and supports to help them navigate their community. Or hold training sessions for small businesses and community public servants that help make public spaces safe for autistic people to interact with the public with acceptance and understanding.

C. Don't erase disabled AAC using, activists of color from being the voices of their own experience. There is an appropriation of neurodivergent voices in advocacy that is just heartbreaking. It is one of the residual tragedies of these events is that those who speak out about them with experience, cultural knowledge, and authority are erased while those who have privilege but no true grasp of what it means to live with Mustafa's dilemma set themselves up as experts and are bolstered, sometimes even provided with grants, to authoritatively discuss issues of racism or ableism without discussing the convergence of racism, ableism, and things like Islamophobia, Transphobia, or structural intolerance of psychiatric disability they cannot begin to understand quite simply because they are not POC who are disabled, AAC users, and survivors of such police encounters. So people who are like my son continue to die while others appropriate the voices of activists who can represent him because they are ASL users, nonspeaking, AAC using disabled adult activists who understand intersectionality and the impact on community barriers to inclusion.

Mustafa's dilemma, with its critical high-risk factor of nonverbal communication not being acknowledged by law enforcement officers engaging nonspeaking people, is not addressed sufficiently by disability rights activists who have verbal speech privilege. Its most recent disastrous result was the death of Daniel Harris, an unarmed Deaf community member shot by a police officer while trying to sign to him during a traffic stop.

I consider this an escalation, happening because the deaths of POC by police in general, and nonspeaking disabled Black people, in particular, were allowed to continue without accountability and with misguided calls for law enforcement training rather than reform of a militarized police culture  even in instances where videos clearly show excessive use of deadly force against unarmed people who were subdued, compliant, restrained, or otherwise unable to inflict harm.

D. Create annual, cross-disability, online actions to demand transformative change . I have never seen an annual event that flash-blogs awareness and calls to reform action about the deaths and harm of non-white autistic adults and children in catastrophic encounters with law enforcement. Why is that? I can tell you, dear readers, that one reason is squarely based upon who is dominating the autism conversation in our country. Affluent, white, parents who can keep their own divergent offspring from harm don't see this as an issue until a victim is white or affluent. Excessive use of force against disabled people cannot only matter when the victims are white. Activist across racial, ethnic, and socioeconomic divides should be shouting about injustice as loudly for disabled nonwhite people as we do for white disabled victims. Only this persistent spotlighting by an entire community makes an issue important enough to force lifesaving nationwide legislative change.

We need a noninstitutional,  community-based infrastructure that can respond to disability and mental health related crises without doing harm to the clients needing supports. This is one answer that arises from the accurately defined problem. Change must be multidisciplinary to dismantle structural ableism and racism.

 Multidisciplinary change combines community partners at both the grassroots and federal levels who do not normally collaborate to find real solutions to the properly defined problem and lobby together for funding to support those solutions. Things like having our most radical Black Disabled activists be part of task forces with their state and local police chiefs, disabled disability and mental health activists, and families to reduce violence against autistic and other intersected neurodivergent people of color.

When I say 'radical disabled activists of color,' I don't mean privileged by way of beginning in poverty and leaving it through education or success - I mean people who are still trying to navigate disability in inaccessible poverty ridden, over-policed communities, are known and respected in those communities for their grassroots activism, and continue to know first hand what Mustafa's dilemma looks like because they actually live it on a daily basis.

We individual activists can also start the inclusive community conversation with our own towns and city councils, our own local governments. What national organizations should be doing is presenting this case rather than rushing to stand in line at the police training queue. The less police have to respond to inaccurate 911 calls about neurodivergent people, the less chance of catastrophic encounters. It isn't really their job, you see, to manage disabled people in crisis. It is the responsibility of our entire community to embrace our people. The sooner we cease allowing community ignorance and ableism to keep our loved ones from living as everyone has the right to in this society, the sooner everyone can be part of bringing Mustafa's dilemma to an end.


-------------------------------------
References:
Dementia Inclusive Communities in Japan Part of National Plan
http://www.opb.org/news/article/npr-japan-offers-dementia-awareness-courses-to-city-workers/
The Death of Daniel Harris
http://thefreethoughtproject.com/cop-shoots-kills-unarmed-deaf-mute-man/
The Tasering and Arrest of Tario Anderson
http://www.wyff4.com/news/greenville-family-file-complaint-after-autistic-adult-son-is-shocked-with-taser-arrested/30415354
http://intersecteddisability.blogspot.com/2015/01/catastrophic-encounters-with-police.html
On the Shooting Death of Paul Childs
http://www.csmonitor.com/2003/0714/p01s02-ussc.html
On The Shooting of Autistic Ronald Madison and others on the Danziger Bridge
http://www.cnn.com/2016/04/20/us/new-orleans-danziger-bridge-plea-deal/
The Shooting of Charles Kinsey in front of nonspeaking autistic client Arnaldo Rios Soto
https://www.youtube.com/watch?v=iT7HcbEo9WM

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.

Nope. NOPE. NOPE.

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.
Peace

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 right 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 appear to be blocking my access to the bathroom or forcing me to keep the stall door open 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.

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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.