Saturday, February 6, 2021

#AutisticWhileBlack #BlackHistory2021: Vaccination While Black

The author, owning
The angry Black woman 
look. Image of a gray haired 
Black woman with glasses. 

The huge disparities between the agendas of those individuals with the largest platforms who are presented as allies to autism advocacy and the realities of what African American autistic families need to survive have continued for all the years since my son's diagnosis. I try to highlight and speak out, but my voice is tiny. But I am fed up and I'm going to vent now.

Steve Silberman, the author of  NeuroTribes, posted this on social media:

Steve Silberman: Vaccine envy is a thing.

I have been trying for months to emphasize the struggles and barriers to our communities of color, particularly my racial peers, having access to vaccination. I have been trying to show the incredible irony between the near gaslighting being done to push vaccination on our people when there is no supply of vaccines to give us. The cruelty of advertising mass vaccination events as "open to the public" at sites that require individuals to have cars when those most vulnerable don't own cars and no public transportation is provided to those sites. In truth, only those who have managed to gain appointments, which require access to the Internet (needs class privilege and access to technology) are allowed at mass vaccination sites, and there can be no mass vaccination without vaccine supply.

Being Black in America during a pandemic means the quality of healthcare given is limited because the staff, equipment, and treatment options that those with race and class privilege have are not available in their zip codes. Add racialized autism to these obstacles, and the idea of achieving vaccination becomes a nearly impossible mountain of barriers to climb.

Black vaccine hesitancy is discussed in the press and narrowed to one incident when the history of disparity in health services and maltreatment of African Americans continues to this day. Only Rachel Maddow has spoken to our own people trying to breach barriers to vaccinate us. 

I tweeted about Drene Keyes going into anaphylaxis minutes after being given the first Pfizer vaccine dose. I am angry that the same excuses for why more of our people are dying from COVID 19 are being used to excuse her death. Her preexisting conditions. This is not the first anaphylaxis reaction to this vaccine. Others have had this reaction so this was a known issue. Why then, was this not thought through before giving the okay for a disabled woman to receive this vaccine? Why is our community not asking these questions? Because the quality of healthcare for the non-racialized disabled population is better than for us.

My son and I are disabled. No one has bothered to care whether disabled people might die from anaphylaxis after a dose of a vaccine. No authorities have taken the time and care to warn African American patients, a majority of whom have preexisting conditions and low access to quality healthcare services, to wait before getting vaccinated. Instead what we hear, from supposed allies, is pressure to forget the disparities in healthcare that are driving up the numbers of us who die from this coronavirus. We hear that it is a lack of education causing vaccine hesitancy, while hospitals that serve our most impoverished communities demand equipment, medical supplies, and staff to fight the surge in infected patients. Entire families are dying. Our people are pressured to sign up for vaccination appointments when they have no access to the means of signing up. We are told to drive to vaccination sites without a car. We are told to stay at home when our jobs require delivering food, medication, and care to those who can stay in homes without risking eviction for not being able to pay rent. We are told to go to mass vaccination events when there is no vaccine supply. 

I want everyone claiming to advocate for autistics and their families to do better. It's time to advocate now by giving us the damn mike since mainstream autism advocacy is clearly ignorant of what has been happening to our community since the beginning of this pandemic. Reach out to your communities and do something to save lives and make this vaccination effort equitable for everyone. We are dying while our supposed allies are posting quips on social media.

When will those who are supposed to be our allies cease making thoughtless, clueless, cruel statements like "vaccine envy is a thing?"

If this is the mainstream idea of allies, miss me with that.

Rant, done.

Thursday, October 29, 2020

#AutisticWhileBlack: I've Got This

Image of a Latinx presenting teen wearing a red tshirt
Note, this happened last year. Our school system is closed and virtual this year due to the pandemic. kc                     It happens every few homeschool reviews, but each time it happens, especially when I’ve been up all night with an under the weather disabled teenager, my heart sinks. When I reached my table and greeted the reviewing officer, I say “my son has complex support needs and is a nonspeaking autistic teen.” “My daughter’s a BCBA!” she answered. “We have an Asperger’s program at our school.” “I’ve got this.”
                                                  I grit my teeth and wait. I know what’s coming and I’m so sleepless! I just can’t today. Not today. And away she goes.                                                                

What follows is a long lecture about how incompetent I am to educate my own son. She barely flips through the binder in front of her. I wait for her to pause. “This is his curriculum,” I say instead of responding to something that is actually not legal for her to say to me. I begin flipping through the binder, showing her recent photographs of Mu doing activities, the comprehensive grade report from his online school complete with time spent on each subject lesson, dated, and accompanying worksheets. I start showing his microscope, science lab equipment, apps, books, music and art curriculum, language reports. She finally starts looking at the books and comparing the worksheets to the lesson reports. “Um, well.” “His name should be on the grade report.” “I can’t print anyone else’s grade report out but his, that is the way the online reporting system works.” “Would you like to see the grade report from the online site directly?” (I begin searching for the website on my cell phone. I have only slept two hours. I am trying to hang on to my patience.)

“How old will he be again this coming year?” she asks. “He’ll be 18,” I answer, knowing she knows when he will turn 18 from his portfolio in front of her. I know what’s coming. She answers “18 is a big year.” “We can do a lot more for him you know. He can attend school until he is 21.”

I wanted to shout “Let’s go over what public special education has done for him until the moment it nearly killed him!” Instead I patiently, painfully, again, repeat the story of how I, a staunch believer in public schools, a product of the public school and DoDDs school systems, decided to give up my job, stay home, and home-educate my disabled Black son.

Her smug expression paled, then blanched, then she gasped. Tears came unintended to my face, but I went on, discussing all the harm that led up to the day they “lost” him at school, in the most restricted education environment. How he was “found” by a stranger, an anonymous “member of the local community” who caught him wandering in traffic, a seven-year-old boy who used a wheelchair because of his unsteady gait, who supposedly did not have the OT skills to open a child safety gate, who at the time he went “missing” was in a classroom with a special education teacher, two paraprofessionals, one paraprofessional directly responsible for only him, two classroom aides, and a speech pathologist. A non-speaking autistic little boy who was impossible to miss because he was then in the 98th percentile in height and weight compared to his peers. The school’s story that changed from the telling to retelling, of how long he was missing before they notified us, of why the police weren’t called to search for him, of who found him, of where he had been found [he was found at a nearby pond/ no wandering in traffic] of why he had been washed and redressed and fed grape juice before calling us, of why he was wandering outside on a rainy and windy February day with no shoes or coat, of why he had no shoes or socks on in his classroom in the first place.

I had to repeat to this thoughtless, horrible, ableist woman who decided she knew the story of my son’s life, what it feels like when you are a mother with a heart condition who gets a call that your only son is missing and has been missing for an undetermined length of time and your daughter hears a sound come from your mouth that cannot possibly be human, and you don’t remember but suddenly you have called your husband and told him they have lost your baby and your husband grabs his coat and begins running, he runs out the door of his office at Johns Hopkins, runs to Camden Yards station, runs for the train and calls the head of PGCPS and roars that if a hair on his disabled son’s head is out of place, if they don’t find our boy, he would ensure that he won’t be qualified to be so much as a janitor of PGCPS, he will haunt the man the rest of his miserable life and they had better find our boy now and tell us why we weren’t told when this happened.

And I tell this arrogant woman how my daughter picked me up from the floor and we grabbed our coats and ran, ran for a taxi and told the man driving hurry, hurry our boy they had lost our boy, and how the police shuffled us from one phone to another and hung up on us and then I asked her if she knew what it felt like to call your son’s pediatrician crying and have the man tell you that it was best if he did an exam for signs of rape, and when he says your son is okay you hug your daughter and son and cry and cry and now the nurses and staff who stayed late to wait for the outcome are crying and saying “no copay today” and now the woman has blanched chalk white and remains quiet.

She finally begins really reviewing his portfolio. “You've done an amazing job here, “ she says, her voice breaking. “How..” “My daughter,” I reply. “After the final school incident, she changed her major.” “Went back to school and got a master's in special education specializing in complex support needs and low incidence disability.” “She helps with curriculum and supports my instruction.” “My husband provides the technology and finds things like the microscope that displays on his computer screen. “ He is also the support for my son’s adaptive P.E. work. “
She writes approval for the portfolio silently. She says, “we aren’t that county.” “This would never have happened in our school system.“ “I have been told this,” I answer. “But he is my only son. The last child I will ever have. I risked my life to give birth to him. I can’t take the risk he’ll be harmed again. “

Another brutal portfolio review is over. I leave, fighting back tears, thinking, “don’t worry son, we’ve got this. “

Wednesday, August 12, 2020

#AutisticWhileBlack: Race, AAC, and The Right to The Voice of One's Peers


Image of the author's son in a hooded raincoat holding an iPad used as his AAC device while looking from his balcony on a rainy day

In 2017, O, the Oprah Magazine, commissioned a famous white photographer, Chris Buck, to deliver a series of shocking photos on the reality of how racial inequality is socialized into the American psyche. The most striking photo is of a white child with long blonde hair standing in front of a shop window filled with Black dolls. 

Had Oprah's team thought this through, they would have chosen a talented Black photographer to both present the topic and uplift Black photographers from obscurity. But the reality of what life was like for me and all my peers as a child was clearly displayed in that script flipped series of magazine photos. 

Asking me why I want anything specifically African American for my Black autistic son is a highly painful personal question. The answer lies in the reality thrown into stark relief in the photos displayed in that magazine. We are taught through every channel of mass communication that our societal worth is less than whites. This system attempts to subliminally teach us that we are not humans who matter. It is meant to remind us that the world is not made for us.

Our country dictates the scope of our culture and societal value by how we make the dominant culture feel and react, and how we serve and entertain them. These views of speech, beauty, justice are subliminally infused in our daily lives. Our hair is "not right" because the standard of beauty is white hair, which is largely straight. Our speech is "not right" because our English has a lilt and flows like music. It is okay to have a foreign accent but not okay to have an Ebonic one. We were taught to eliminate the Blackness from our voices if we wanted to succeed and lift our race above poverty.  It seems to be okay for white people to mimic and mock our speech, or to profit from our athleticism, creativity, and intelligence, but it has been taught to the white majority that to date, the African American Vernacular (AAVE or AAE) is a sign of a lesser command of English rather than a cultural variation. AAE has been used to diminish us and make us feel that we are not educated enough or assimilated enough to be acceptable to mainstream society. It has been used to excuse injustices like disparities in criminal justice, healthcare, and work-life benefits.

Asking me why would I want an Assistive Augmentative Communication (AAC) device made to serve my son to have the voice of my Black brother is like asking why I would want my son to have a Black prosthetic arm instead of a white one. The idea of having this option is long overdue. If my son could use verbal speech, his voice would not sound like any of the voices on his current AAC devices. It is a question that shouldn't have to be asked. It matters more than anything that a person has the equivalent of a speech device made for the entirety of who that individual is. And right now, in 2020, that option does not exist for my son and his AAC using Black autistic peers.

But this question is extremely painful for me. There was a brief part of our son's life when he could use verbal speech. Somewhere we have a video of him speaking Turkish to me. It happened when his father was asleep and I was recording. Our son asked if he could have some food. His voice was the African American toddler version of his father's. His Turkish was beautiful. I witnessed that he fully understood the Spanish other toddlers at the playground spoke too. He responded appropriately to all their requests he join them in play and on various pieces of playground equipment. 

I am a heritage Spanish speaker. My husband is a heritage Turkish speaker and our daughter is an interpreter and educator. Realizing our son had a facility for being multilingual with the ability to smoothly code-switch from one language to another was one of the happiest days of my life.

Our son still has that talent for a receptive understanding of many languages. But the hope of verbal speech, impeccable AAE/Turkish /English/Spanish with that distinct AAE lilt is gone. The idea that he could have a voice that even slightly resembles the one he lost in his assistive technology is both exciting and heartbreaking. 

It is heartbreaking that I must explain why this matters. It is heartbreaking because we are in the year 2020 and it should not have taken this long to realize this need. It is heartbreaking because asking me this question brings a great deal of pain to me. It forces me to remember that generations of our people have had to justify our right to the same quality of life as white American society. It reminds me that I was the little Black girl looking in the window at all the white dolls and not finding any who looked like me.

We have a right to the same quality of life white disabled people already enjoy. Asking me to give reasons why a nonspeaking autistic Black teen would need an African American voice on his AAC device shows how much further we need to travel to get there.

P.S. The need for a variety of African American voices on AAC devices is also a matter of hope. Hope that someday, AAC device access will not be blocked by affordability. A disabled Black nonspeaker's right to the assistive technology they need to communicate should not be something unaffordable to most of our people. AAC devices, like prosthetics for physical disabilities, should be available and affordable to all, regardless of race.

Wednesday, July 29, 2020

#AutisticWhileBlack: Lift Your Family Out Of Autism Mourning Culture

Image of Mu in a red and black t-shirt and black shorts
under a canopy that protects him from
insects without the use of bug repellent, posted with
the permission of the subject. © Kerima Cevik
Mourning is a word that parents, including me, have misused. Being told by a medical doctor that our son would never improve and would eventually be institutionalized caused my entire family to break down in tears of shock. When we got home after an entire day of grueling tests and traumatic news, my husband, daughter, and I hugged Mu and one another and I vowed he wouldn't see the inside of any institution. Then we helped one another buck up and find ways to teach him and enrich his life.

We need to be clear about the language we use to describe milestones like diagnosis day in our children's lives.
I said this elsewhere I am going to repeat it here. I can't tell people how to govern their emotions. My activism is among other things, against parents and carers who abuse and eventually murder their autistic children. The pattern of abuse in every case, and I mean every case, begins with the appropriation and perversion of the process and meaning of mourning.

The Kübler-Ross model of five stages of grief is itself problematic. Yet parent-led autism organizations continue to espouse the appropriation of this model and apply it to parents mourning their children's diagnosis of autism.

Quoting the article "It's Time To Let The Five Stages of Grief Die" on the topic of applying a hypothesis based on anecdotal interviews on how patients handle a terminal illness diagnosis to any or all manner of grief/mourning:
"Despite the lack of evidence to back up the Kübler-Ross stage theory of grief, its original birthplace, On Death and Dying, has been cited 15 509 times on Google Scholar at the time of writing. It has been applied to everything from the grief processes of those diagnosed with diseases like COPD or HIV, to the grief experienced by caregivers of those with dementia; patients who have amputations due to diabetesdoctors who receive low patient satisfaction scores or go through reduced resident work hours; even (and I am not making this up) the grief experienced by consumers after the iPhone 5 was a disappointment."
 And we can add to this the constant presentation of the same expectation of mourning to autism parents. Parents get caught up in a culture of prolonged mourning. They wallow in it. They escalate their own emotional upheaval by seeking out online groups and followers who perpetuate the cycle of this appropriated mourning culture such that said mourning breeds resentment that combined with chronic insomnia end in harm to autistic youth. 

So while I began with being sad at the initial news on a diagnosis day, this perpetual mourning was not a thing I did. My family was given our son's diagnosis in the most brutal and clinical way possible. But our son was right there. He deserved better and we understood that. As Mu got older we realized that the temporary reactive sadness we experienced and overcame wasn't the culture of mourning that some other groups of parents were steeping themselves in. We began efforts to seek out parents who saw their children as they were and accepted them without this constant cycle of mourning based upon inaccurate stages of grief not meant for disability diagnosis at all. Eventually, I came across Jim Sinclair's Don't Mourn For Us. After reading it, I felt that our family was on the right path, and we began to actively stay away from groups of parents who pushed this mourning culture rather than discussing what could be done to support and facilitate better lives for our son and his peers.

Mourning has a meaning that implies catastrophic loss and that, when your child is right in front of you and needs you to be present and supportive rather than grieving and disconnected, is, in my opinion, a reason for a parent to reach out for mental health counseling until they are in a better place and can see their children as they are without mourning the idealization of a child that never existed. Stepping away from this culture of mourning autistic children opens the door to self-healing and true acceptance of disability. We parents should be given a mental health roadmap from diagnosis day onward. Parents need to be certain they have themselves together when this journey begins. Whatever issues we have, individually and, if applicable, as a couple, need sorting before we can help our autistic children. That begins with the culture presented on diagnosis day. There is no room for medical professionals abandoning hope when the potential of an autistic nonspeaking child is not yet measured. Dumping pamphlets on parents and sending them on their way is not the answer either. We are doing diagnosis day the wrong way. We are creating the beginning of this culture of perpetual mourning that fossilizes into resentment and may potentially escalate to violence against autistic children and youth. 

I can't speak for everyone. But when my family made a group decision to step away from the parent mourning culture, we began to see progress with our son that professionals were not getting from him. The most important gift any parent can give to their disabled offspring is the understanding that they are loved, they are capable, they are competent. That can't happen if we insist on mourning what we imagine they might have been if disability were not part of their lives.

Wednesday, April 1, 2020

#AutisticWhileBlack: Love In The Age of COVID-19: Patient Rights

Cartoon image of the author's son at age five in hospital.
Posted with permission of the subject
Credit Kerima Cevik
I have always loved my nonspeaking autistic son, without preconditions or reservations. No pandemic will change my will to fight for his survival. Regardless of the public health crisis, my nonspeaking autistic son has a civil right to receive medical support without the threat of any denial of access to life-sustaining healthcare. The casual way political figures and media pundits are dismissing high-risk citizens as inevitable fatalities of this pandemic is terrifying. Remember that a seventeen-year-old who had no apparent high-risk medical history died from COVID-19 related symptoms after being denied care because he was uninsured. This incident alone should have us questioning a healthcare system that puts getting paid over saving lives. So why has no one been talking about what will happen if nonspeaking autistic patients test positive for this virus?

Despite the surge of COVID-19 cases in New York, Governor Cuomo has issued an executive order that all hospitals allow partners to be with their significant others during the birth of their children. I am asking myself why the governors of all US states and territories haven't issued similar executive orders allowing one parent to be with nonspeaking autistic and disabled offspring with complex support needs should that patient contract COVID-19 and need hospitalization. Is it because they consider our loved ones expendable?

 They aren't. My son and the thousands of children and adults like him have the right to survive this pandemic too. And since disabilities that include verbal communication challenges hinder his ability to advocate for his own life should he become infected with the virus, it is my job as his parent to be there with him.

I realize the magnitude and consequences of what I am asking. I do not even know, as the number of patients rises if my son would receive treatment. His right and my right to it is being debated as I type this. But if God forbid he contract this novel coronavirus and become so ill that he needs hospitalization I cannot allow him to fight for his life without one of us by his side to make certain he is not discarded because he's disabled. I have had a good life. I am willing to pay the cost to be with him, even if that cost is my own life.

 I watched doctors on social media make some pretty unreasonable excuses for why such denial of care decisions are necessary. Yet we know a 103-year-old woman from Wuhan survived the virus. Meaning blanket decisions not to treat any high-risk population-based upon presumptions they won't survive is cruel and inappropriate at best. Our information about this virus, even how it is transmitted is sparse and inconsistent even after four months of heartbreaking attempts to stop the spread of it. Should my son pay with his life for the failure to prepare for this pandemic?

I am disappointed and angry at the lack of any visible response to these public displays of ableism. With the exception of ASAN, Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), The Arc of the United States (The Arc), the Center for Public Representation, and the Bazelon Center for Mental Health Law,  no major autism-related organization has acted to defend the right of our loved ones to treatment. I saw immediate and loud protests from parents about public school response to autistic student's IEP requirements being inadequate. I saw parents having meltdowns about not having access to respite care, therapists, and support staff. I have not seen one word from parents who have managed to get their education-related complaints in major newspapers and on television about their autistic children's right to access COVID-19 testing, treatment, and their right to survive. That lack of interest actually scares me.

There must be other parents and primary care providers asking what will happen to their children if they contract the virus? Has no one else asked why no parent-driven autism organization is coming forward with emergency planning advice for how a single father or mother will manage if they get infected? Does no one lose sleep over the nightmare scenario of watching them wheel patients to isolation wards, and those patients never seeing their loved ones again?

I have been asking myself things like what should our community be doing to focus attention on the equal right of autistic people to access testing and health care for the duration of the pandemic? What will the greater disability justice community be doing to find ways of opening spaces for our loved ones to access health support for conditions requiring health support unrelated to COVID-19?

We needed to get COVID-19 related scripts for health advocacy on AAC devices in February. Why didn't autism organizations reach out to speech app software developers and SLPs about this? We need to discuss countering the idea of hospitals considering blanket do not resuscitate orders.  Can our organizations join to create homemade masks for primary care, respite, and other staff supporting our offspring? Why has no organization created a video that shows our kids step by step how to wear masks, explain social distances, and explain not touching a hand to face in a manner that is age-appropriate? There is so much that we can do within our community to reduce stress and increase hope but this needs to be organized and executed jointly. I know everyone is in shock but no one seems to care enough to do this for our community when so many others have come together to act on behalf of other high-risk populations. And what I have seen in Op-Eds this year is the usual causation arguments, sales pitches for fundraising, writing about our children as if they were overgrown violent infants who tend to stray, and lamentation of parents instead of needed crisis information and support.

My last and greatest concern is access to family therapy for families with autistic children who seem to be struggling to manage their offspring at home full time. This may not be an issue for families like mine who have been home educating for years. But in families who spend very little quality time with their autistic children between school, aftercare, therapies, and spring camps, the shock to both the autistic children and their parents is taking its toll. In normal circumstances, the number of filicides is too much. This added stressor may make things that much worse.  Judging from the rise in domestic violence in France since stay at home orders were given my concern that similar harm may come to autistic children and those forced to shelter in place with families that have immediately begun complaining about them being themselves seem valid.

I love my son. I want to be more hopeful about my son's chances to weather this pandemic and survive. That can only happen if our community comes together in greater numbers to champion our autistic loved ones right to survive it. Their survival is much more critical at this moment than just about everything else happening right now. Shouldn't autism organizations be putting that first?

Wednesday, January 15, 2020

Cognitive Dissonance and The "Aspergian" Question

"The genius of apartheid was convincing people who were the overwhelming majority to turn on each other. Apart hate is what it was. You separate people into groups and make them hate one another so you can run them all."
-Trevor Noah
Born A Crime

It is my opinion that the history of the term "Aspergian" is so rife with ableism and eugenicist ideology that nothing may redeem it. I say this knowing that had I been born in the late 1980s or 90s, this term, which is today conflated with the term Aspergers,  might have been added to my own "gifted" label.

My son is considered Black under the one-drop rule.
 He is a diagnosed nonverbal autistic.
Image of a Hispanic male presenting youth  with
curly dark brown hair and tan skin clean-shaven in
a wheelchair drinking a bottle of water Image
posted with permission of the subject.© Kerima Cevik 
In the fall of the past year, I was bombarded with a rage tweetstorm by individuals who felt I was threatening their identity by tweeting my views on the Aspie supremacist nature of the fabricated term 'Aspergian' and for that matter the eugenic past of Asperger himself ("He joined several organizations affiliated with the NSDAP (although not the Nazi party itself,) publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child 'euthanasia' program"). Eventually, I chose to stop trying to justify my position or explain it in any way because I realized that no matter what facts I had to back up my points, what I had to say would never be accepted.

So what I am writing here is for readers who truly want to understand my point of view on the topic of Aspie Supremacy, Aspie Segregationism, the Aspergia Island myth, the error of using the term Aspergian interchangeably with Aspergers and Aspie, and how the language of Aspergian promoters so closely resembles white nationalists post-election attempts to change their lexicon of terms to make white supremacy more acceptable to mainstream audiences that I began to push back against the use of the term Aspergian entirely.

I also need to remind people that this is my perspective, based on how things are right now in the United States, and how much damage and hatred is harming us all by building these disability hierarchies within already marginalized communities.

What made me so sure that explaining the link between eugenics, disability and racism, and how this informed the Asperger supremacist philosophies that gave rise to the Aspergia Island concept and later the conflation of the term for citizens of fictional Aspergia, i.e., Aspergians, would make no difference to those people who identify as Aspergians?  It has to do with how people hang onto desired identities even when presented with any factual evidence to the contrary. An excellent example of this rejection of any identity viewed as less acceptable to society is the story of Susie Guillory Phipps, and how an unknown fact can induce cognitive dissonance that results in serious emotional reactions in people.

Susie Guillory Phipps' Crisis of  Racial Identity

Susie Guillory Phipps and her husband Andy went to request her birth certificate to apply for a U.S. Passport needed to travel to Europe. But when Susie got her birth certificate "she was, as she put it, "flabbergasted and sickened" to learn "the state's Bureau of Vital Statistics had her down as ''colored.'''

''I'm not light,'' she said, pointing to her face. ''I'm white.''  But the State of Louisiana had a surprise for Susie. A genealogical record going back 222 years to a maternal ancestor, a black slave named Margarita. Margarita was the daughter of white planter John Gregoire Guillory and an unknown slave. So Susie's race was not determined by 222 years of white ancestors but by a 1970 Louisiana law that codified the "one-drop rule" meaning if a person had one thirty second percent "negro" blood that made them "colored".

The idea that she had a black ancestor, even in 1982, was such a shock to Susie Phipps that she upended her entire way of life to reject this truth. She believed she was suddenly not accepted in the most privileged caste of her state. She vehemently denied any ancestry that linked her to the caste of least privilege. The cognitive dissonance was too great. In her own words, "sickened" by the idea she could be "colored", Phipps spent over five years and $20,000 demanding in court Louisiana change her race on her birth certificate to "white." Before the one-drop rule applied to her, Susie probably never gave racial identity a thought. But once such a rule directly impacted her class and race privilege she reconciled a fact about her ancestry by rejecting it.

Informed by eugenics, white supremacy remains part of the structure of society in Louisiana and much of the United States. Even now. Mrs. Guillory Phipps's identity crisis and desperate efforts to get her suddenly 'lost' white privilege back demonstrate that individuals faced with a choice between any uncomfortable revelation that places their perceived identity into a lower status and a pleasant myth that allows higher societal privilege they will choose the myth every time. They will passionately defend the myth, and they will abhor the idea of being associated with anything they view as a less privileged or exclusive identity.

I began writing about the harm done at the intersections between racism, eugenics, and autism through the stories of individual autistic youth and children when my son was constantly harmed because of these biases against him. Within the autism community, there are parents, professionals, and adults who segregate and classify autistics by their ability to use verbal speech, their degree of disability, the degree to which their autistic loved ones can mask any outward sign of their disability. or their achievement potential. Some parents weaponize complex support needs nonspeaking autistics like my son to justify usurping the right to dominate discourse about autism resources and public policy, thereby controlling funding and decisions about my son's quality of life that should belong to him. Others use the Asperger's label as both a stick to beat their offspring into what they hope will be a path of being indistinguishable from their typical peers and a way to show superiority over parents of nonspeaking, complex support needs offspring. Then there are those folks whose entire identity hangs on carrying the Asperger's label in the way Susie Phipps needed to have the label "white" rather than "colored" to somehow prove her right to access all the privileges of being in what she considered the upper caste of an apartheid-like social system.

When the American Psychiatric Association updated its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and renamed the diagnosis Autism Spectrum Disorder (ASD), dropping the sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder), all hell broke loose.  Parents who wanted complete control of the autism conversation demanded a "severe autism" subcategory. Parents who wanted their children presented consistent with the "little professor" myth and wished to distance themselves from autistics with ID/DD labels wanted to keep their Aspergers labels. Others wanted more. They wanted to be another degree of distance from the rest of those with the ASD diagnosis. They rushed to embrace the fabricated label "Aspergian."

In 1999, Aspergia Island, an imaginary island state, was created by a group of people who wanted to design a culture in which their genetic differences were a mark of human evolution. They built an online site that tried to establish a full-blown virtual nation, including passports for members, a logo, and an origin myth. The myth of being diasporic refugees from the Aspergia utopia drew a following that filled chat rooms and threads with disturbing rhetoric. They flirted with eugenic based language, the idea that perhaps they, diasporic Aspergians, were the next phase of human evolution. They discussed their own intellectual advantages. While much modifying of the original messaging happened as more information on autism positivity and unity spread online, the underlying message of Aspergian superiority and the emotional need to build an identity of higher status based on the name Aspergian was passionately embraced by those who wished to separate themselves from other autism community members. 

In 2007, John Elder Robison published his memoir Look Me In The Eye. He identified himself as Aspergian, thus doing irreparable harm to the autism community by perpetuating what amounted to a North American rule of hierarchy-of-disability-based hyper/hypodescent to autistic identity. Late diagnosed at 39, Robison spent years dealing with internalized ableism, and this was unfortunately reflected in his writing. Robison's books became bestsellers and expanded the Aspie separatist culture globally. Other famous autistics, most notably Temple Grandin, was justifiably taken to task for making ableist statements against autistic youth with ID/DD labels and complex communication/support needs.  In her book Thinking In Pictures, she says

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.
 After 2007, the rift between families wanting to distance themselves from those who could not mask autistic traits and those who did not want funding and support given to autistic children and adults who could pass for typical intensified. The resentment of families whose loved ones required lifetime support and services and who could not mask ID/DD labels became toxic online. Wealthy parents wanting to be free of their complex support needs offspring began using their wealth and influence to lobby for institutionalization. They learned to present institutional settings as less toxic places by changing the labels used to describe them, but this continues to be the goal.

The Aspergers label is still used in other parts of the world, and it is an identity that those who own the label are so emotionally invested in that like Susie Guillory Phipps, any idea of replacing it with any label of less status causes such cognitive dissonance that people will react as she did and drop everything else to protect the risk they will lose their perceived identity. Those like me who believe that it is critical to understand that autism as a single label allows everyone to receive every right to needed services and health support throughout their lives will continue to be viewed as threats to this need for holding on to the identity of most privilege.

Parents of those who wish to distance themselves and their offspring from any hint of association with the more marginalized "autism" label continue to demand a return to the Asperger's label in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5). I will continue to state that Aspergian is a harmful term, it should not be conflated with Aspergers or Aspie. I believe that at least here, in the United States, the DSM change that collects all subcategories into a single disability umbrella was the right thing to do.

My son is autistic. There was never any chance, even when the label existed here, that he would be diagnosed with Aspergers. He is one of the folks autistics like Temple Grandin consider collateral damage and that is not acceptable to me. Everyone who insists on demanding I accept the term Asperigian in this community should take a deep dive into the history of the term, why those who use it refuse to accept factual information about the toxicity of it and explore the internalized ableism inherent in perpetuating a term meant to make those like my son less in a hierarchy of disability to feed their own need for an identity of misperceived higher privilege.

One last note. Supporters of a magazine that uses the term "Aspergian" insist that Googling the term proves that the magazine's publisher has succeeded in redeeming it. I disagree with this because of the way Google searches work. What these people are viewing are search results based on their personal search histories and preferences, not what will result when anyone else does the same search.  "According to Google, personalized search gives them the ability to customize search results based on a user's previous 180 days of search history, which is linked to an anonymous cookie in your browser. ... By tracking search results Google attempts to provide the most useful and relevant content based on your search"

Resources and Further Reading
United States v. Bhagat Singh Thind, 261 U.S. 204 (1923)

Wednesday, January 1, 2020

Power, Disability, and The Realities of Consent

Image of Mu, a Hispanic presenting biracial child at age four with short wavy hair wearing a maroon T-shirt, his head
resting on the blue metal rung of the slide he is climbing at one of his favorite playgrounds. Tennis courts can be seen in the background. Image posted with permission of the subject: ©Kerima Cevik 
Over the past decade, I frequently posted the same few photographs of my son on my blogs and social media, and people would occasionally ask why I didn't post more. There are photographs of my son that he likes, and images he does not like. Sometimes I like images he does not. However, I do not have his consent to post the ones he does not like, even if I think my preferences matter. I now ask my children, both the adult and the disabled teen, for permission before I post any photos of them on any public forum. It isn't something I gave enough thought to before the arrival of this age of deep fakes/extreme photo editing/child predators/online stalking/revenge porn/etc, but it is something I am really concerned about now. I spend serious time agonizing over these questions:

Does my nonspeaking autistic son really know what it means that his images are on the Internet forever? Have I been able to successfully explain the Internet enough for him to understand the implications of what that means to him?

This is really important. Where do my parental rights to share my children's photos end and their rights to individual privacy begin? I decided to write about this on the heels of witnessing a parent doing something we parents do a great deal automatically with little regard to the consequences. We proudly display photographs of our kids during the rite of passage events in their lives. And if our kids are autistic, we insist that come hell or high water, they are going to get their rite of passage event photos too, and we are going to splash them all over social media. But should we do this without their consent? And what about their worst moments? Should we record and broadcast those moments for all the world to see?

As my Autistic son is dependent on my care and support, this means I have the power in our relationship. I need to grasp that when I ask a question, he may be afraid I won't like his honest answer. I have to make certain that when I ask my disabled teen son a question, I ensure he is not answering to make me feel better or because he is afraid of giving an answer I won't like.

What are the repercussions if an Autistic teen does not support what their parents are saying or doing? They may lose quality-of-care, affection, support,  even a safe home. They may be institutionalized for being noncompliant. It doesn't take verbal speech for anyone in a position of complete dependence to grasp this. We can't assume that we have their approval or consent unless we have spent years building a trust relationship with them. They must know its okay to say or gesture "no" to you without retaliation.

Autism consultant Carol Greenberg pointed out that even with precautions, what we parents believe is consent may be compromised by a lifetime of compliance training, trauma, and other factors that might keep our autistic loved one from giving an honest response to our requests.

I have seen recent instances of parents putting their reluctant autistic teens through rites of passage events, then broadcasting them in the hope they will become viral. What disturbed me about these events was the storytelling language usage by the parents that left the autistic teen a voiceless prop in their own event, the way the parents allowed coverage of each event without regard to their autistic teens feelings on what content and how much content should be disclosed (one autistic teen's mother bragged about calling boys in her daughter's high school class trying to get one of them to take her to the prom), and the infantilization of the autistic person involved.

And what about autistic people of color who have become public figures after catastrophic harm? While it is important that we know what has happened to them and what is being done to rectify the harm or seek justice, how far can anyone reporting these traumas and their aftereffects go in discussing private health information on public forums without that disabled person's consent?

I've written about Arnaldo Rios-Soto. He was the subject of a podcast, and there was a moment in that podcast episode that some reviewers didn't grasp the need for but for me could be called the pivotal moment of the entire podcast.

It happened during then WNYC reporter Audrey Quinn's interview of disability justice advocate Lydia X.Z. Brown, Esq, on the podcast "Aftereffect." Brown was asked to comment on their view of other's information about Arnaldo's behavior.

Brown responded. "I don't know Arnaldo personally, and I think it's inappropriate to be talking about Arnaldo specifically at his worst moments in such a public forum. Because I wouldn't want someone doing that to me. Don't be a predatory reporter."

When professor Quinn pressed on about third-hand information regarding Arnaldo's behavioral history, Brown answered: "Is that something that Arnaldo has given you permission to talk about publicly? Because that's a really important question."

This was a clear reference to Arnaldo's right to give or deny consent. Gaining Arnaldo's consent was something Quinn agonized about doing. I wondered why an attempt wasn't made with the support of a Speech pathologist, using the methods of communication already familiar to Arnaldo, for example,  by presenting him with a very brief, illustrative YouTube video in Spanish. What many journalists reviewing the podcast didn't understand was how groundbreaking an interview that emphasized the need to gain the consent of a disabled involuntary public figure to share private information about their behavioral health during moments of complex post-traumatic stress was.

So let's think about why I'm saying this. Disability justice advocate Brown demanded Arnaldo's behavioral health history not be debated or discussed with strangers in a public forum without his consent. They reminded Quinn that people who have survived trauma will react to trauma (that is what post-traumatic stress disorder literally means) and that such reactions should not be fuel for victim-blaming or mislabeling survivors. They also reminded Quinn that disabled people are people, and like all people, disabled people can be violent, abusive, terrible or compliant, kind, and passive.

Chanel Miller's identity was protected during the trial of her attacker. She made a decision to disclose her identity and gain control of the narrative about her experience as the victim of a violent crime. Arnaldo, I realized, was never given that privilege, something that regardless of his degree of disability and CPTSD, he should have had the right to do.

Sometimes people end up memes or subjects of viral social media content and lose agency over a moment in their lives forever. For our offspring, who are forced to live in social structures built to deny them any agency in their own lives, it is up to us to do whatever we must to ensure we truly have their consent to present them in public forums.

In lieu of general comments, I hope to hear recommendations on how parents can facilitate their offspring's right to give consent even when that person is a nonspeaking autistic youth or adult, and how to support ID/DD children so they gain the confidence to give or deny consent. This also needs to be a discussion on how to help parents reduce fear so they learn to respect a denial of consent from their disabled children.