Showing posts with label Erasure of nonwhite autistics. Show all posts
Showing posts with label Erasure of nonwhite autistics. Show all posts

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 
sweater.

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.

Wednesday, April 20, 2016

Autism Month Essays: The Price of Erasure

Harriet Tubman,  By artist H. Seymour Squyer, 1848-18 Dec 1905
National Portrait Gallery, Public Doman,
https://commons.wikimedia.org/w/index.php?curid=9717226
According to POLITICO, "Treasury Secretary Jack Lew on Wednesday will announce plans to both keep Alexander Hamilton on the front of the $10 bill and to knock Andrew Jackson off the front of the $20 in favor of Harriet Tubman." 

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

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

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

Monday, April 11, 2016

Autism Month Essays: What is Wrong With This Picture?

Google Glass
By Dan Leveille (danlev on Wikimedia) - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=33220901
A very large failing in the autism conversation is inherent in the way things about autism are presented. Regardless of the merits of the content, the way it is presented to the public feeds a cycle of structural ableism and structural racism that do great harm even when the content itself appears positive.

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

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

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

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

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

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


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

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

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

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

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