Wednesday, May 18, 2016

How Not To Endorse An Anthology

Tom Wiggins aka Thomas Greene Bethune, holding a copy of his composition
Rain Storm Photo By W. L. Germon of Philadelphia - tennis*elbow,
 Public Domain, https://commons.wikimedia.org/w/index.php?curid=25192531
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. "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 autistics are 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 account of 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.

Resources:

The Weight of Our Dreams information can be found here:
http://autismandrace.com/
The Autism Women's Network information can be found here:
http://autismwomensnetwork.org/?gclid=CKP6guSC5MwCFQ9ZhgodrSMMiw
Autistic While Black: The Erasure of Black from Histories of Autism is here:
http://intersecteddisability.blogspot.com/2016/01/autistic-while-black-erasure-of-blacks.html
Steve Silberman's article title was derived from Mike Buckholtz's CNN article interview "The Invisibles" which can be found here:
http://ireport.cnn.com/docs/DOC-768049
Steve Silberman's Mark Twain references on Wiggins came from a medical model narrative probably here:
https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/profiles-and-videos/profiles/blind-tom-a-19th-century-marvelous-musician/
Steve Silberman paraphrases a reference I made to a scene from the documentary "Refrigerator Mothers" taken directly from my article where Dorothy Groomer discusses racial reasons why University of Illinois doctors refused to label her son Steven as autistic that excerpt can be directly accessed here:
https://youtu.be/DtKJ0PCz4QI
A JHU Kennedy Krieger Institute Lead Paint Research study which harmed disporportionately poor black community members in Baltimore, disabling children, is the subject of ongoing multiple lawsuits which can be read about here:
http://articles.baltimoresun.com/2014-06-07/health/bs-hs-lead-lawsuit-new-20140607_1_kennedy-krieger-institute-children-study
A Civil Rights complaint has just been filed against the state of Maryland for approving a new fossil fuel power plant in Brandywine, a community that is 75 percent Black, brings the total plants producing toxic output to the community to 5 and can be read about here. 
http://www.publicnewsservice.org/2016-05-12/energy-policy/civil-lawsuit-filed-against-maryland-over-power-plant-in-brandywine/a51868-1
John Davis Plays Tom Wiggins here:
https://youtu.be/A2Y-l0bsriE

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