"Not everything that is faced can be changed, but nothing can be changed until it is faced."
James Baldwin
Image of the author in profile, an Afro-Latina disabled woman
with gray natural hair, looking sadly at something in
the distance. Image rendering Prizma credit K. Cevik
Unless you are one of us, a person carrying the label of being disabled while Black, you cannot possibly understand the visceral nature of moving through space with a target on your backs, and knowing your body is in constant jeopardy because you are both Black and disabled. It isn't the same if you are disabled with racial privilege. It isn't the same if you are another intersectional combination. Because there are those hundreds of years of struggle to prove we weren't chattel while simultaneously trying to prove that as disabled people we have a right exist as well.
There continues to be experimentation and involuntary sterilization and redlining and all the systemic racist ableism in between. So it broke my heart to see Dr. Perry's article Police killings: the price of being disabled and black in America even though I’ve included it below, not because it wasn't well written, nor because he didn't interview and cite Black disabled activists, but because he continues to benefit from our suffering and tragedy by having the privilege to be able to gain platforms for his writing while being neither disabled nor African American, having an education unrelated to disability rights or critical race studies, and operating from a position of privilege that a majority of Black disabled activists cannot.
That is the very definition of white privilege.
Nor could we possibly produce this thoroughly researched an article with this turnaround. Not with the meatspace struggles of surviving with the labels we carry that each day demands. Add to that those who have responsibility for families without equal access to services and supports, and there is not even a level field for competition.
This article may have been well-written but this was our story to tell and we were not granted the opportunity to tell it without appropriative white narration, and in a time of oppressive white supremacy, it feels extremely wrong that a white cis male with no background in disability or critical race studies should both write this and brag about gaining a payday for his writing about us without us, particularly since in the past he claimed to be an ally. He now defines himself as "accountable."
At a time when we have been handed a verdict that makes it open hunting season on myself and my disabled racial peers, unreasonable or not, it hurts me that we again end up nothing more than photographs and quoted content in our own story, analyzed, explained and narrated by an author (however kind and making an effort to present the topic to a global audience) who is neither our race nor disabled. It is too much like profiting from our suffering. My mind understands the good intentions but my heart says good intentions pave the road to white patronizing patriarchy. Perhaps it is my fey mood and only now getting to read this thoroughly. But that, however wrong to others it may be, is how I feel.
Feel free to tell me how you feel about this article. I’ll come back to it when I’m less sad.
A historic event in the timeline of the history of autism and disability rights activism is about to happen. The Autism Women's Network, probably the most diverse nonprofit organization in autism rights advocacy, is about to publish an anthology consisting entirely of nonwhite voices. "All The Weight Of Our Dreams" was edited by three powerful activists of color, Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu. This may be the only anthology actually allowing the voices of autistic people of color to speak without validation or qualification of parents or professionals. This will be groundbreaking.
I was therefore shattered when I read a piece by NeuroTribes author Steve Silberman giving the book a brief mention in a recent article entitled "The Invisibility of Black Autism." Why would a white best-selling author of a history of autism and neurodiversity's acknowledgment of an anthology on race and autism upset me? I wrote about the erasure of Black autistics from histories of autism, including Mr. Silberman's in the article "Autistic While Black: The Erasure of Blacks From Histories of Autism."
Since the message has not been understood, here's what is wrong with Mr. Silberman's article, and it is a primer about how not to write about race and autism.
1. Don't be a hypocrite. If a white author excludes any mention of Black autistic historical figures in a comprehensive history of autism, he has no place writing about the topic as if he is an authority on it. Mr. Silberman excludes Black autistics from his history of autism, where Blacks, in general, are only mentioned to give scenery and import to the heroes of his book. He also applies the n-word in his book unnecessarily, as the use of the expletive adds no value to the narrative at all. Imagine my surprise when suddenly he's writing about the trials and tribulations of Black autistics.
2. Don't conflate the issue by choosing a misleading topic title. "The Invisibility of Black Autism" is a nod to a CNN article by African American Autistic music producer Mike Buckholtz you can read about here. The title conflates invisibility and what is actually happening which is erasure. Articles like "The Invisibility of Black Autism" actually contribute to erasure. Black autisticsare visible; the issue is how they are impacted by disparities in health care support, misdiagnoses based on presumptions founded in structural racism, disparities in educational and ADA supports and services, and research that excludes and abuses them (I disagree with Mr. Silberman that the exclusion of single parents is a factor, this is an example of how a generally known statistic about a socio-economic group within a racial minority is both overgeneralized and used to presume causation of factors that may correlate but not be relevant to the issues discussed). Invisibility implies Black autistics are not visible; erasure makes it clear that Black autistic representation, Black autistic voices, and Black autistic people are having their efforts appropriated, used for the benefit of others, and as a result wiped away.
3. Don't write if you don't know your topic. When an uninformed white author tries to write about race and disparities in research, inevitably the history of the use of the Black body as a human lab rat is excluded from the narrative, and cultural stereotypes like the single Black parent phenomenon and cultural limitations within our community are pursued as a cause for lack of accurate data. Black families are leery of studies with just cause, and when trust is given to researchers the consequences continue to be devastating, as recent events like the disastrous Kennedy Krieger lead paint study lawsuits continuing in Baltimore have made clear. Never discussed are infrastructure planning decisions resulting in toxic environments for disproportionately Black and Brown communities, and how such environments impact disability and Black and Brown attitudes about research as well. See the latest civil rights lawsuit filed against the state of Maryland about the building of an additional power plant in Brandywine, MD bringing the total of plants in one community that is 75 percent Black to 5. The impact of environmental injustice on disability and race would not be addressed by an author who would fail to realize its disproportionate impact on our community.
4. Don't plug an Autism Speaks supporting site in the same article you plug the anthology of three powerful autistic fem activists of color fighting for disability rights of intersected people. The Color of Autism site promotes Autism Speaks' 100-day kit and the medical model philosophy of autism. While their documentary attempt to give voice to the need for services is admirable, it uses the autistic youth in the film in the same manner they are used in any Autism Speaks PSA and this is infantilizing, appropriative of their voices, and diminishes them. Mr. Silberman appears to be attempting to placate potential audiences for his book, and straddling a fence to gain the good graces of parents rather than supporting a great anthology by disability rights activists who are experts on the topic. Numerous sites on disability and race exist, along with blogs from disabled disability rights activists of color, parent allies, and academics who write on the topic of disability rights and critical race studies. I can therefore only conclude that the choice to mention The Color of Autism was clearly meant to promote Autism Speaks supporting parents of color.
5. Don't begin an article with a slave trope presentation of an important Black autistic historical figure and force readers to read a degrading portrait of him in a racist oppressor's accountof a man who spoke through his musical compositions, regardless of who that racist white person was. Mr. Silberman continues to use Black people as objects in their own stories by placing the emphasis on famous white people and their dissection and denigrating view of said Black disabled people. The presentation of Black autistics in this fashion relegates historically important people like Tom Wiggins to chattel and this serves no purpose but to limit the reader's view of African American disability history as beginning and ending with slavery. Wiggins, who earned enough money while enslaved to hire a composer to teach him to compose blind, then fought until he was granted the right to have his own name on his compositions managed a monumental accomplishment for a man who was declared 'non-compos mentis' simply to keep him enslaved. He created variations in his compositions that do not fit the stereotype of the blind autistic savant pianist as understood today, so his groundbreaking work and his successful fight to put his name on his intellectual property were the ultimate triumphs despite his unlawful near lifetime enslavement. Listen to this piece, The Rainstorm. Blind Tom traveled extensively and his musical expressions and influences were the sum total of his world travels, not just his life as a slave child on a plantation, a life he left at age 5 to begin a life as a traveling performer. The Rainstorm by Tom Wiggins:
6. Don't erase Black autistic people from their own stories. The shock of not seeing a photo of the historical figure mentioned in the article, but instead, in a long article about the invisibility of Black autistics, the only image in the body of the article is that of white Leo Kanner, who would never have included Blind Tom in his classification and studies of autism in the first place, speaks volumes about erasure that while I'm certain Mr. Silberman did not intend happened again and with impunity in his article.
7. Don't talk about autistics of color without them. This piece of writing should not have happened. Instead, Mr. Silberman might have used his privilege to interview Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu about the history of autism and race in general, the reasons they embarked on this project, and their individual and organizational goals with regards to the promotion of the voices of nonwhite autistic people. This means proper representation beyond simply requesting a quote, or using references from sources without noting their origin, thus erasing the voices of marginalized people speaking for themselves. Instead, we are subjected to a graphic of bursting black puzzle pieces, so the subliminal message is hammered home that Autism Speaks speaks for all Black autistics when they most certainly do NOT.
The article Mr. Silberman wrote is symptomatic of the structural racism embedded in our society, perpetuates stereotypes on race and autism, and erases autistic voices of color while its apparent intent was to bring these issues to light. How can this article be believed to aide endorsing any book on race and autism? The road to hell is again paved with good intentions.
The Weight of Our Dreams is a powerful anthology and everyone who worked on it deserves a better endorsement. I hope they get one.
Autistic Savant Artist Stephen Wiltshire completing a panoramic cityscape
from memory credit Atlantic BlackStar
In the struggle to have the voices of intersected autistic populations heard, the critical importance of Black autistic savants and the need to include them in autism history cannot be understated. Their existence and the inadvertent documentation of their lives due to savant qualities despite their historic status as an oppressed minority serves as a series of timeline markers in periods of history particularly when African Americans were enslaved; therefore neurodivergence would not have been noted except as a serious detriment to be dealt with through deadly force. In a present day autism conversation rife with structural racism and stereotypical conclusions and analyses drawn from misinterpretation of research on disparities in healthcare, education, and services for the Black autistic population, these indicators that intersected autistics existed long before Kanner and Asperger were tweaking theoretical pathologies of what autism was should be part of any timeline in autism history. Just look through a few people generally accepted as fitting the criteria for autistic savant by virtue of the observations of characteristics each expressed while others documented their savant abilities. Thomas Fuller
"Thomas Fuller, an African sold into slavery in 1724 at the age of 14, was sometimes known as the “Virginia Calculator” for his extraordinary ability to solve complex math problems in his head. Rumors circulated that he was a savant, since he could not read or write, but that was not uncommon among slaves at the time. Some believed that he may have gained his skills with math in his homeland in Africa. His owners, Presley and Elizabeth Cox of Alexandria, Virginia were also illiterate. They never sold him so that all his life he remained in one place'.
"Thomas Fuller was significant in that his abilities were used as proof that enslaved Blacks were equal to whites in intelligence, which fueled some pro-abolitionist discussion." (Wikipedia)
Thomas Wiggins
Tom Wiggins 1861 credit Wikimedia Commons
"Thomas "Blind Tom" Wiggins was an African American musical prodigy on the piano. He had numerous original compositions published and had a lengthy and largely successful performing career throughout the United States. " Wikipedia
Tom was blind at birth and descriptions of his behavior onstage and off have experts concluding he was an autistic savant.
Tom was also called "The Last Slave In America" because his owners had him declared non compos mentis in order to continue ownership of him after the Civil War.
Born: May 25, 1849, Harris County, Georgia, GA
Died: June 14, 1908, Hoboken, NJ
Eugene Hoskins
It is quite clear that Eugene Hoskins was an autistic savant. Eugene was 24 years old in 1920 when Hiram Byrd used him as the subject of a a research paper about his calendar savant abilities. Hoskins loved trains and hung out at the train station in Oxford, Mississippi. Byrd's vulgar description of him concluded that he was entirely African no doubt based upon a superficial evaluation of how dark his skin was rather than any proper research of Mr. Hoskins' origins or kin. In the article "Eugene Hoskins Is His Name" subtitled "The long-forgotten story of a black autistic man in Oxford, Miss., who crossed paths with William Faulkner," it was said that Hoskins refused any money for displaying his abilities of helping people learn when their train was scheduled to come or go from the station. He lived with a white family who owned a store near the train station. Byrd's documentation of his existence and symptoms marks a place in autism history that makes it clear that Black autistics were known when researchers were doing work on defining autism. Mr. Hoskins' existence therefore belongs in any history of autism.
Noel Patterson
Noel Patterson was the subject of intense study who lead to breakthroughs in understanding the mechanics of autistic savant syndrome. He was 19 during the period of the study in 1986, part of a documentary on autistic savants called "The Foolish Wise Ones" that aired the same year. He was a musical savant whose ability involved tonal structures and relationships. He could faithfully reproduce any musical composition he heard on the piano and could play said tune on the piano with one hand while picking out correct notes on a guitar with the other. Unlike other musical savants, Patterson, who was in a group home in Britain, was not given the intensive musical training, exclusive of everything else needed to fully develop his talent. Instead his talent was treated not much differently than Blind Tom Wiggins' gift, a curiosity to be displayed for researchers or visitors to the group home. Noel wasted his days spending a limited amount of time on the piano and the guitar.
Noel Patterson's story is a good example of how Black Autistics are seen by researchers, care providers and others as resources for amassing data who can also serve as scenery for those who write about them or film them. Savant abilities were only of use as lab research data and parlor tricks. No one ever thought to enrich Mr. Patterson's musical skills to the degree that Blind Tom Wiggins' or Derek Paravicini 's abilities were nurtured and perhaps carve out a career for him. Instead, books were written about him and he was the subject of a documentary, after which, they decided he should spend his days weaving and being made to use wood shop tools.
I wish I could say that this attitude towards Blacks who are not upper middle class or wealthy has changed. I don't see much change.
Stephen Wiltshire MBE, Hon.FSAI, Hon.FSSAA is a British architectural artist. He is known for his ability to draw from memory a landscape after seeing it just once. His work has gained worldwide popularity. Wikipedia
Born: April 24, 1974 (age 41), London, United Kingdom
Education: City and Guilds of London Art School
Artistic savant Stephen Wiltshire is another good example of how erasure works in the history of race and autism. Oliver Sacks devoted an essay to him in his book "An Anthropologist on Mars." Sad isn't it, that he is mentioned four times in Steve Silberman's NeuroTribes: The Legacy Of Autism And the Future Of Neurodiversity" only as someone Sacks wrote about who helped develop his theories of autism, as an object of Sack's compassion rather than a Black autistic savant who is one of the most famous artists in England. Unlike Noel Patterson, Wiltshire, who was very young when he was featured in the documentary "The Foolish Wise Ones" had the advantage of a school and family who recognized his talent and professional architects who acknowledged it and stressed he be educated and this talent nurtured and developed fully. He is able to support himself and with his sister's help, he travels the world, drawing huge urban landscapes viewed through helicopter flights over the cities themselves. Stephen Wiltshire was allowed to develop his potential. Savants are so rare that regardless of race, their talents should be supported, developed and encouraged. My disappointment that Mr. Silberman's publishers did not see the need to move this important role model for autistic children of color to the role of a historical figure but rather relegated him to scenery in the narrative of Oliver Sacks' research is deep, moreso because Mr. Silberman did exhaustive research on this book.
This quick, tiny list of individuals excludes African American men and women who were inventors, academics, musicians, performing artists and researchers who, while not in the savant range, had documented trait descriptions that point to classic autistic expressions. No mainstream history of autism to date has bothered to discuss these individuals as people rather than scenery for those who documented their existence or used them as money making curiosities or experimental subjects.
Consider that the existence in history of Black autistic savants shows genetic links to autism that might have helped African American families recognize, reconcile, and accept the divergence in their family members more readily.
This took me a single page and roughly 8 minutes to research. Any of the authors who have published histories of autism could have done so as well.
Meaning that erasure of people of color in general, and African Americans in particular from autism histories and autism policy is blatantly alive and well. Worse, few voices are shouting in protest about it.
Until intersected populations within our community are acknowledged as more than genetic research material, until the very real disparities in health and therapeutic supports, assistive technology supports in educational settings, and race based special education disparities within public schools are addressed, until nonwhite stakeholders are made true and viable participants in building diversity centric autism policy on a national scale, structural racism will remain the ugly reality seated at the table of the autism community. As long as wealthy, white, cis parents dominate this conversation by excluding intersected community members nothing will change. This deeply embedded structural racism that is silencing everyone who is not white and well off enough to use their privilege to impact public autism policy has been festering a very long time. The policies driven by this small privileged group benefit only a certain class and race of autistic people and their families while harming entire intersected autistic populations and those who care for them.
The injustice in this reality is that much more shameful because so few stakeholders with privilege care as long as they believe their own offspring or their own agendas are not affected.
I have been giving voice to this for four years. The new histories of autism make it clear that voices of dissent like mine are lost in the perceived triumphs of all who benefit from histories presenting autism in ways that have not deviated much from what Dorothy Groomer relates in her account of what she confronted from medical professionals during her search for a diagnosis of her son Stephen's divergence in the documentary Refrigerator Mothers:
Particularly NeuroTribes is a fine if imperfect history. I find, however that no history of autism appears to be worried about including nonwhite people in any capacity that is not objectifying. I look forward to this changing, but I'm not hopeful.
------------------------------- The Eight minute Black Autistic Savant Research exercise sample of resources
(intended to make the point that this could have been done easily by anyone researching the topic): Atlanta BlackStar http://atlantablackstar.com/2014/04/15/6-black-savants-will-amaze/
