Tuesday, July 27, 2021

#ADA 2016 While Black Revisited: In Memory of Elsie Lacks

Image of Elsie Lacks, a small Black girl in a
plaid dress, white shirt. socks, and shoes.
Her hair is straightened.
Credit: Lacks Family
I read the story of Henrietta Lacks that made Rebecca Skloot famous. The family descriptions of Elise Lacks, Henrietta’s immaculately cared for, nonspeaking daughter (in the header photograph) who had epilepsy and cerebral palsy, show what Skloot and the Lacks family didn’t know but anyone familiar with autism would have guessed.  There was a possibility that Elsie Lacks may have also been autistic.

Her sister Debbie did not know where Henrietta placed Elsie when Henrietta’s cancer became too advanced to care for her, and she spent years trying to find out what happened to Elsie, hoping she was still alive and Debbie could bring her home and care for her as her mother had. The horror of discovering what Hopkins medical researchers had done to Elsie and all those Black men, women, and children diagnosed with epilepsy at the Crownsville State Hospital, the only mental institution in Maryland for Black patients, traumatized Debbie. She never fully recovered from the shock of what she learned that day.

A final, heartbreaking photograph of a much older Elsie taken after she was experimented on and mistreated is so distressing that I can’t post it here. Debbie Lacks later died of a heart attack. Before her fatal heart attack, Debbie Lacks made certain that a grave was made and a funeral held for her beloved sister Elsie. Her body, like many of the black bodies of those who suffered and died at Crownsville, was most likely given over to University of Maryland medical school. Even in death, the black body was not allowed to rest in peace.

So now I am going to say the unpopular thing, the incorrect thing. For the memory of Elsie and all those Black people with psychiatric disabilities who suffered and died in places like Crownsville before and since.

The grave Debbie Lacks had made 
in Memory of Elsie Lacks 
The biggest myth in the conversation about mental health and African Americans is that we are ignorant of psychiatric disability, that we believe our myths, and that families don’t speak of mental health or reach out when we need it. My stepfather’s family was open and upfront about the larger family’s mental health challenges, traumas, and worked together to keep members with psychiatric disabilities active parts of the family and protected them from police, self-harm, and harm from others. When it became clear that some family members needed professional help, the family sought help.

Generalizing all African American family mental health experiences across socioeconomic and cultural subgroup constellations is wrong and sends the wrong message to us at a time when we have had enough of being gaslit into accepting outside views of what our people and our culture of mental health is by a government that allows systemic racism to continue without accountability and harm to rain down on our people while we watch. Following this lack of action with demands to our people that they seek mental health support is horror story irony.

Having a national conversation about African American psychiatric disability, in this moment of extreme racism, while blithely brushing aside the fact that our government is not protecting those who are poor and Black from systemic racism is beyond inappropriate.

Believe me, we are all aware of psychiatric disability. This is not the time to deconstruct the resilience of our people to serve any purpose, regardless of the good intentions behind such efforts. The underlying message being sent to those who are poor and Black is that they are being told to out themselves as also having a psychiatric disability, without having established any protection for said individuals to retain their parental custody rights, protection from involuntary incarceration in psych holds, and mental institutions, or protection from further redlining based upon the additional label of psychiatric disability.

We live in the age of policing for profit, blatant racism, blatant ableism, a resurgence of legalized euthanasia calls for increasing institutions with researchers lobbying for the right to experiment on institutionalized people without their consent and loss of civil rights. African Americans in poverty are already in precarious positions. This approach to psychiatric disability is the wrong one at the wrong time, particularly since the federal government has been unable to demonstrate any ability to protect African Americans who have died from racist attacks or excessive use of force.

The DOJ has failed to try a single case in which unarmed black people have died, both during police engagement and when walking down the street since Trayvon Martin’s murder. Now I'm supposed to believe that our people, particularly our young men living in poverty, should declare they have psychiatric disabilities and the historic horrors and abuses that occurred in places like Crownsville State Hospital, for which to this day, neither the state of Maryland nor Johns Hopkins School of Medicine have apologized, will not be repeated?

There can be no going forward without establishing enforceable protections for all people with psychiatric disabilities. There can be no going forward without apologizing and taking responsibility for the past.

There has been no justice for our people. But they are now being asked to risk themselves further and trust those who oppressed them in the past again with no apologies and no guarantees of justice if such abuses recur?

Trust them?




Rebecca Skloot’s ticket to fame: The suffering, death, and Immortal Life of Henrietta Lacks: http://rebeccaskloot.com/the-immortal-life/

The institutionalization, suffering, and death of Elsie Lacks as part of the history of Crownsville State Hospital: http://www.capitalgazette.com/cg-tragic-chapter-of-crownsville-state-hospitals-legacy-20140730-story.html

The formal request led by the ACLU from multiple organizations to then Maryland Governor Martin O'Malley "to investigate and publicly acknowledge the historical mistreatment of African-Americans in the state’s mental health system, particularly at Crownsville State Hospital, which, for half a century, was the only state hospital to admit significant numbers of African-Americans." http://www.aclu-md.org/uploaded_files/0000/0453/crownsville_8_2_13_finalwsigs.pdf


Thursday, June 17, 2021

#AutisticWhileBlack: Against The Erasure of Ron'Niveya O'Neal


Ron'Niveya O'Neal, a beautiful
Nonspeaking Autistic Girl wearing
a filter crown of flowers that 
match her pattern pink and white 

On April 7, 2018, the body of 9-year-old Ron'Niveya O'Neal was laid to rest in Tampa, Florida. Ron'Niveya was a beautiful, nonspeaking autistic African American little girl who was brutally murdered by her own father, Ronnie O'Neal III. 

I have been following the case. The press had a feeding frenzy with O'Neal III defending himself, shrieking at the jury, and being allowed to cross-examine his now 11-year-old son Ronnie O'Neal IV. Young Ronnie is the only surviving member of that night of familicidal violence. 

Neither the press nor the autism community gave a damn about Ron'Niveya. The media rarely mentions her by name. She is called Ronnie IV's disabled sister, or Kenyatta 'Keke' Barron's daughter. She is the evidence of a double murder. But that is all. Her humanity has been stripped from her.

I have seen no cries for justice for Ron'Niveya. Was she mentioned in the day of mourning rolls? I honestly don't know. But what I do know is that Ron'Niveya mattered so little to all stakeholders in the autism conversation that no one mentioned her. No one cared. And that, after the entire world view of Black suffering shifted in that wake of witnessing the murder of George Floyd and learning about the shooting death of Breonna Taylor is inexcusable.

 I am posting Ron'Niveya's obituary below. Read it. Remember her not because she is a symbol of violence against nonspeaking disabled youth but because she should matter as much as Alex Spourdalakis mattered. She should matter more than those in our community who sat silently while John Elder Robison happily provided autism as an excuse for Dylann Roof, someone who premeditated and murdered innocent African American parishioners at Mother Emmanuel AME Church in the hopes of beginning a race war. 

The erasure of Ron'Niveya and so many other nonspeaking autistic children and adults of color like my son made me so angry that years ago I began writing about them. Trying to keep them visible. But now I am much angrier. Because this did nothing to stop the horror of what a high profile autistic white cis male like Robison did while everyone else except Lydia X. Z. Brown and Sam Crane was silent. 

Everything about how Autistic Black people, especially nonspeakers, are treated in this community needs to change. To those who put themselves at risk to demand change happen, to the true allies against ableist racism in our community, thank you for your tireless efforts. You all have my deepest respect. 

Obituary (via Integrity Funeral Services) :

Miss Ron’niveya O’Neil

Ron'Niveya O'Neal, a
beautiful brown-skinned girl 
wearing her natural hair into 
two high puffs, and huge tulle
 pale pink bow and a pink T-shirt
with a big white heart at its
center with the words 'boy, bye'
written in the middle of the heart. 

A Celebration of Life for Miss Ron’niveya O’Neil will be held on Saturday, April 7, 2018 at 11:00 a.m. at Greater New Salem PB Church located at 1605 N. Nebraska Avenue, Tampa, 33602 with Elder Dr. Benjamin Curry, Pastor officiating. Interment will follow at Rest Haven Memorial Park.

Ron’niveya O’Neil was born July 29, 2008 in Hillsborough County to Kenyatta Barron and Ronnie O’Neil. Ron’niveya attended school in Hillsborough County. She attended Foster Elementary and continued on to Corr Elementary. She loved getting up and seeing her Mommy and brother. She loved dressing in pretty clothes and wearing earrings. She loved eating Oreos. She loved seeing her bus driver Terry Wallace and her teachers and Corr Elementary. Ron’niveya is preceded in death by her mother Kenyatta Barron. She leaves her cherished memories to her loving brother Little Ronnie, grandparents Booker Ray and C. Barron. Alonzo McNair and Lisa Smith. Her aunts and uncles Jonathan Barron, Alisha Barron, Javario Barron, Daisatta Baldwin, Sasha Eliza, and Tabario Cobbs. Her great grandparents Samuel and Pamela Barron, and Alvin McNair Sr. 

Her great aunts and uncles Latonya Barron, Teresa Barron, Claire Barron, Inez Foxworth, Sabrina Foxworth, Aretha Foxworth, Josephine Holmes, Carolyn McNeal, Jacqueline Monge, Tony Barron, Simmley Barron, Jimmy Foxworth, Eddie Holmes, Rodney Baldwin. Her cousins, Carrieonna Baldwin, Roslyn Baldwin, Rodneya Baldwin, Destiny Baldwin, Rodney Baldwin Jr., Herashiona Crum, Deontae Barron, Tony Barron Jr. , Randy Barron, Tyler Barron, Olivia Barron, Cynthia Green, Chianita Austin, Tavaris, Cammi, Marcus Nesbitt, Lisa and Elaine McCormick, Joyce Ray, Romaine Wint, and a host of other relatives and friends. A special thanks to the men and women of the Hillsborough County Fire Department, the Hillsborough County Sherriff's Department, and to the various staff at Tampa General Hospital.

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?