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

Thursday, April 14, 2016

Autism Essays: Recalibrating Autism Acceptance


Poster of Mustafa Çevik taupe letters on a black field read: This
Neurodivergent Multiracial Adolescent is aware of his mother's
race is aware of his autism and their ableism Deserves Respect
Your Awareness if paving the road to hell
Presume his competence #Tone it down Taupe ©Mustafa Nuri ÇEVIK
and Kerima ÇEVIK
Fiat justitia ruat caelum.

Sometimes I use profanity when I communicate. This is going to be one of those occasions.

If the three branches of the federal government united tomorrow and declared that henceforth Autism Awareness Month would be named Autism Acceptance Month throughout the nation it wouldn't mean shit to me. Maybe I would have been excited about the meaning of such a possibility four years ago. I'm not now. You see acceptance without representation is not acceptance. What I have seen is an insufficient amount of representation, objectification of intersected populations across the entire autism community, whether medical model or disability rights and a great deal of ableism.

My lack of enthusiasm is rooted in the fact that autism acceptance is now defined differently by every stakeholder presently promoting the concept. Acceptance as it was originally presented by autistic disability rights activists like Paula C. Durbin-Westby, is being drowned out by people who aren't really receiving or disseminating the core message. They are simply trading one word for another without the foundational mind shift necessary to grasp what is meant by acceptance and apply it to their lives. Tolerance is not acceptance. Tolerance is putting up with something even if you don't like or agree with it. Acceptance is lending credence to something or agreeing with it. Right now, many parents, professionals, organizations, allies and famous autistic people with internalized ableism conflate the word acceptance with the word tolerance and that needs to stop. One's tolerance of nonspeaking people doesn't mean one accepts them. This conflated message is wreaking havoc on  the message and purpose of Autism Acceptance Month.

The way autism acceptance has come to be presented is very much the way equal pay for women has come to be presented. The voices heard were white and had large platforms from which to broadcast their message.  On those platforms, all intersected populations of women were used as poster children for the cause, while their voices were ignored or silenced. The equal pay act of 2009 was named after a white woman in a country where my intersected demographic, Black Latina women, earn 54% of what white males earn. Ms. Ledbetter and her peers earn 78%.  Despite the so-called victory of the Ledbetter act, that disparity is not being addressed. Because the conversation of equal pays only matters when the speakers are white, once pay parity between white males and white females is reached, the rest of the women, minority, disabled and trans,  women in poverty and abusive situations in which equal pay could be salvation from disaster, won't matter to society. So it is for the appropriation and skewing of autism acceptance.

In the autism conversation, the demand for acceptance is false if acceptance means the exclusion or objectification of people of every intersected population in any acceptance model. If acceptance means only those who speak, and those who speak insist that those who do not use verbal speech are less than their peers with verbal speech, then that acceptance excludes and is thereby ableist. If an autistic woman is presented as our autistic mentor because she is famous and goes from TED Talks to book sales to conferences telling people that nonspeaking autistic youths  don't merit the resources that autistic youths who use verbal speech do, then that is not acceptance. That is ableism. If famous white autistics insist that they wish to continue carrying the label of Asperger's syndrome because they don't want to be associated with their peers in neurology who will always be visibly divergent, that is not acceptance. That is ableism and to both declare that one demands acceptance while rejecting one's own divergent peers is hypocritically ableist. If someone is presented as a neurodiversity expert who is white, cis, male and knows nothing about the needs or crises of intersected and nonspeaking autistic populations, but is constantly placed above autistic activists of color and neuroqueer activists and presented in the media as our leader and our expert on neurodiversity, then neurodiversity is being skewed to exclude intersected populations that have helped to bring the movement to this moment in history that is benefiting primarily white, famous, mostly male autistics.

My son and his intersected divergent peers have the human right to be accepted not tolerated. I shouldn't have to take the entire autism community to task for styling themselves superior to him or his peers.Yet here I am having to do so.

If families whose children have assistive technology and intensive speech services to communicate  now expect their children to become indistinguishable from their peers, that is not acceptance. If it is not understood that the presumption of competence requires the acceptance of all autistics, regardless of degree of disability, but stakeholders are unwilling to accept autistic community members who will remain with a degree of disability that will make them visibly disabled for the rest of their lives, then the message of autism acceptance is failing.

Here are some truths. Some autistic people also have intellectual disability that is severe. They have health concerns that are extremely disabling. If that makes stakeholders uncomfortable then the stakeholders are ableist.

We have to recalibrate the term autism acceptance.  A clear definition of what autism acceptance is must be stated in such a way that once any stakeholder attempts to use this term they will be held to a standard in which bigotry and ableism will not be tolerated. Those styling themselves experts in neurodiversity need to first root out their own internalized ableism, ableism against nonspeaking autistic people, racism and ethnic bias, homophobia and transphobia. Acceptance means accepting everyone autistic. Acceptance does not mean a country club for autistics who have achieved success to the exclusion of those who cannot do so because the world currently favors white, cis, autistics who can pass for allistic.

In a disabled population where 90% of the adults are unemployed, having a tech job fair for those who are verbal doesn't mean shit to me. My son is the child of a software engineer father and a former database administrator and linguist mother. He is allowed free access to a computer with no protection of the operating system from inadvertent tampering on his part. He has owned more than one computer. His sister's operating systems have repeatedly crashed over the years and hard drives have been reformated mainboards rebuilt and replaced, new computers bought. Our son is 13. He has spilled things on his computers, both PCs, and MACs, but he has never crashed an operating system, opened a computer virus or malware. Think about that for a moment. Yet my son would not be considered at any job fair for autistic people because he has no verbal speech and his AAC support is not sufficient to have him communicate his own interests or talent on electronic devices. A vast majority of autistic youth and adults, some who use verbal speech and some who don't, are in my son's position. They are not considered worth the resources when they are worth every resource available. Until our community gets that and works to lift all its members up, we will stagger along every autism month of every year, bleeding as catch phrases and terms are leeched from autistic activist culture and absorbed by the mainstream autism nonprofit industrial complexes for their own use at the rest of the autism community's expense.

We need to reclaim the term autism acceptance. We need to declare that acceptance means the true inclusion of everyone in our community. A community effort must be made to hold a mirror to ableist community members and show them the harm they are doing, demand they mature enough to accept everyone, and give our intersected members the agency in this movement they deserve.
Silently watching this happen without taking steps to make it right is enabling it.

Let justice be done, though the heavens may fall.

Post Script:
On the first day of Autism Acceptance Month, Paula Durbin-Westby wrote the following public service message, which needs to be emphasized and propagated throughout the autism community:

 "PUBLIC SERVICE ANNOUNCEMENT. Remember, if you or your organization uses the words Autism Acceptance, Autism Acceptance Day, or Autism Acceptance Month, even if you also throw in "awareness," You are making a commitment to support NEURODIVERSITY because that's the essence of Autism Acceptance Day/Month, started by pro-neurodiversity, anti-cure Autistics. Please share. I think it is critically important that, as other organizations and people use the term "acceptance," that they use it in its original meaning for those of us who have worked hard to make Autism Acceptance an *alternative* to "I accept my child but I hate their autism..." rhetoric. Because I am struggling to keep my family supported, I can't be online every minute of April. Please think about this when you use it. It's Time to Take Back April! Autism Acceptance Day and Month. Pro-neurodiversity, pro-supports, and services, against "cures," AAD was started to counter April "awareness" stunts that demean us. It has expanded to become a way of viewing Autism in a positive and accepting way. Moving WAY beyond negative "awareness!" NOTE: NO cure-oriented posts will be accepted. This is Autistic Safe Space- nothing anti-autism or anti-Autistic. Thank you in advance! "

The Autism Acceptance Action by Paula Durbin-Westby can be found on Facebook at:
https://www.facebook.com/events/1693850024204283/

Tone It Down Taupe - the counter protest action to Light it up blue, is on Facebook at:
https://www.facebook.com/Tone-it-Down-Taupe-446945788708219/

Autism Acceptance Month's website is here:
http://www.autismacceptancemonth.com/







Monday, April 4, 2016

Autism Essays: On Apple's iPad Ads And AAC For Intersected Autistics

Kasap et derdinde, koyun can derdinde
(The butcher is concerned with meat, the sheep is concerned with survival)
                                                                                   -Turkish Proverb

Mustafa's well-worn backup AAC device, an iPad Mini, with TouchChat
HD App. Most parents wanting iPads for AAC support don't know they
actually need 2 iPads, one for backup in case the other is damaged, lost,
 or stolen @Kerima Cevik

"I've been trying to find a way to get him an iPad," she said to me, her voice cracking. 
"I just know if we could afford to get him an iPad, you know, with one of those language programs, that they would have to teach him to use it to communicate in school." "I could fight for that until they do." "He's fifteen now." "All this time they could have done more."

I kept my voice calm and even on the phone. "All this is true and that is a fine idea, but right now we have to focus on how we can make sure he has his seizure meds for the next two weeks." 
"You can't keep using his emergency meds." " Let's solve that problem together first." 

  I talked to her about the Partnership for Prescription Assistance program.  When her autistic son was out of the ER and back home stable and resting, I quietly asked what else they needed. "Have you been keeping up with your husband's medications and your own as well?" "Are you behind on your power and heating bills?" "When was the last time you and your husband ate?"

"But what do you think about my iPad idea?" She began again. "I just know if I keep him on a GFCF diet and get him an iPad, he'll be more able to ask for help when he needs it." "His service provider says he's too disabled for an iPad but I just know..." 

I told her I would send her contact information for MDTAP, The Maryland Assistive Technology Cooperative, and to reach out to them for possible assistive tech evaluations and to have him try some AAC devices on loan.   She was ashamed of her state of hunger, ashamed the DDA would discover what they'ed been doing to afford the special diet and out of pocket things for their son. She was terrified they'ed be seen as unfit parents and their son would be taken from them. 

"Promise to keep going to these food pantries?" I asked. " I promise," she answered. I told her there was no shame in needing food, that their present impoverished position had little to do with any failing on their part, and their son needed them to be fit and well nourished to help him. This was more important than anything else, that they all be healthy and safe.

We discussed nonprofits that could help defray the cost of their heating bills. 

When she called back from the nearest food pantry to say that everyone was kind and she was no longer ashamed, saying they would be okay and I was assured they would help another family in need, I hung up for the last time and let the tears come.  

How could a family with a teenaged son with intense support needs, a family who despite being long time disability waiver recipients were impoverished,  afford a $750 iPad along with the necessary protective cover with built-in amplifiers, as well as the language app required to give him the speech support he needed? The total cost was in the neighborhood of $4,000. In fact, they would need a backup AAC device as well, pushing this to nearly the same cost as the Dynavox AAC device the iPad + AAC app were competing with.

How could their son's social worker not notice that his mother, his primary care provider, was slowly starving to death in order to feed her son the special diet the extremely well off autism parents swore by? She wanted to change her son's life. I didn't have the right or the heart to tell her that wasn't fiscally possible. 

In the parallel universe of Autism in the American Dream, it's Autism Acceptance Month, and Apple has rolled out two ads for iPad that tell the story of an autistic teen named Dylan, who types to communicate. Here is one of them:

When I saw this ad, I thought of that particular nonwhite mother, and her tremendous desire for an iPad for her son when she and her husband were giving up everything, including food security, and living not month to month or day to day but hand to mouth to provide for him. What about her son's right to communicate? What about their dream?

I witnessed the whipped up virtual controversy over whether or not Dylan, the teen in the Apple ad, is using Facilitated Communication (FC) to type, when throughout the ad he appears to be typing independently. I thought about the staggering level of privilege inherent in the autism conversation. How proudly people discuss how affordable this technology is for autistic people when that is true only in the universe of the Autism Wars of privilege and that is reflected in this excellent ad with this very fortunate white autistic teen, whose entire life was changed with an iPad, a full-time speech pathologist, and any other supports he needed that the families I witness struggling could never afford.

While those comfortable parents who dominate the autism conversation argue about the Apple ad oblivious to the ableism inherent in their presumption of Dylan's incompetence, people are wondering how to provide basic communication supports for their autistic loved ones in the only setting they can afford such services - the public school system. Schools give them as little support as they can in one of the most critical areas of nonspeaking autistic support need; speech and language. But of course, none of this matters to families like Dylan's or those arguing about whether Apple's latest ad supports FC. 

Does it dawn on these opposing parties screaming at one another that very few families who aren't flush with disposable income from either the generosity of extended family members or immediate family wealth, can even afford FC training, or other typing based options like Rapid Prompting Method (RPM) for their children? Do these people have any clue of how perilously close so many families of autistic teens and adults are to catastrophic poverty? How many autistic adults who actually need the communication support of an iPad feel fortunate if they qualify for section 8 housing, health care, and food stamps? 

This is the root of the problem with the Autism conversation from this place of intersectionality where I stand witnessing all this disparity in priorities and arguments of what is needed while crises continue for families who aren't white and aren't wealthy. 

In the hard world of real life outside the privileged American dream, iPads are neither available nor are nonspeaking autistic children of color assessed for their use as speech devices in public schools.  IDEA requires such assessments for assistive technology in areas of critical deficiencies that bar learning. But they are rarely done. Printing PEC cards are cheaper than training teaching teams to support speech devices. Speech-language pathologists are too pricey to have them working with nonspeaking kids in public schools the 40 hours per week they would need to begin to master AAC communication on the most inexpensive AAC adapted iPad. No IEP team would create an individualized education plan for one nonspeaking student to receive one year of nothing but speech language towards mastery of a communication device. Intensive AAC speech support towards fluency is the way the world of special education and individualized education plans should work, but it does not.

Meanwhile far away in the land of autism for the American dream, parents shout for full academic curriculums and full inclusion for autistic children. Because their children already have all the outside speech, OT, PT, and any other supports they need, so their priorities are now social skills and integration, for the renewed dream of college for their offspring. 

The African American retired professional with the 15-year-old nonspeaking autistic son will have to continue to fight for that iPad and language app, because when the cost of living soars while a family's income is fixed they can't save any money. An iPad as an AAC device is a dream very much like winning the lottery. A dream with a one in a million chance of happening.

 I often wonder if that family was caught up in the Baltimore riots, trapped in the city while getting his medical care. I wonder how they are faring in the struggle to survive. I wonder about another family, an African American single father with two grown nonspeaking autistic sons who like to wander. They lived near Freddie Gray's neighborhood, and I wonder how they fared during the riots too.

I was the advocate of last resort. People heard about me through word of mouth. I would try and solve the emergencies they couldn't tell their service providers, schools, social workers, and distant relatives about and tell them how they could help themselves to solve any future ones on the condition they did the same for another family. Then they were on their own. The work was so brutal that for the sake of my own son's needs and my own emotional and physical health, I stopped doing it.

This is the truth of the parallel universes creating a canyon divide in the autism conversation. I am a witness to the frivolity of  arguments about the method by which an autistic teen learned to type independently,  thus gaining autonomy, while I try to shout that families of color are now slipping into poverty, and wanting an iPad based AAC device just as desperately as the well-off white mother in Apple's latest iPad ads for Autism Month wanted one for him.

The butcher is concerned with meat, the sheep is concerned with survival.

The voices of privilege are concerned with whether or not an autistic teen named Dylan is using FC in Apple's iPad ads for Autism Acceptance Month. I am concerned with how yet another generation of nonwhite, nonspeaking autistic children will gain access to the relatively affordable, but still expensive, iPad/Touchscreen devices, speech apps, and the speech supports they have a legal and human right to have in order to achieve even baseline communication skills for their own survival in a hostile world. 

-----------------
Resources:
On Apple's iPad for Autism Acceptance Ads
Emily Willingham, Ph.D
http://www.forbes.com/sites/emilywillingham/2016/04/02/apple-goes-beyond-autism-awareness-promotes-acceptance/#11f39b6c1385
On Maryland's Assistive Technology Cooperative
http://www.matcoop.org/about.htm
On Disparity in Communication Rights In Public Schools
http://autisticadvocacy.org/2016/03/asan-files-ada-complaint-on-communication-access-in-schools/
On the Partnership for Prescription Drug Assistance - a free program
https://www.pparx.org/

Thursday, February 25, 2016

Death Without Dignity: The Inevitable Consequences of Maryland's End-of-Life Option Act


"Life, although it may be only an accumulation of anguish, is dear to me; 
and I will defend it."

MARY SHELLEY

Nearly one year ago, I gave written testimony before the Maryland House and Senate regarding opposing the Richard E. Israel and Roger "Pip" Moyer End-of-Life Option Act. You can read that here:

Readers should also see the disturbing new study on exactly what has happened to the now perverted euthanasia laws in Europe here:

Where The Prescription For Autism Can Be Death

I am going to bring up my points of opposition to the annual reintroduction of this bill, adding this very critical point first. In the wake of the passage of or the Affordable Care Act (ACA), the rush to embrace euthanasia protocols is already having serious punitive consequences for terminally ill patients and this harm should disturb everyone. The myth of rebranding legalized assisted suicide as dignified and rolling out a new, hip lexicon of language to hide assisted suicide legislation under the guise of "empowerment" and "choice" does not change these laws opening the door to abuse, denial of insurance coverage for patients who wish to live and continue medical treatment to do so, and the expansion of the law beyond its intended scope.  With insurers going as far as flatly stating in their rejection letters to patients that they refuse coverage of life-sustaining care but will pay for euthanasia drugs, cases like those of Barbara Wagner and Randy Stroup make it quite clear that mandated assisted suicide places those with limited means in an inhumane and unacceptable ethical position that contradicts all vaunted "beautiful death"  or "choice of death empowering terminally ill patients" stories.



I oppose this revised bill.
My primary concerns:

1. Patients can request physician-assisted suicide if a doctor has diagnosed them with a terminal illness and six months or less to live. Such a prognosis is nearly impossible to accurately predict.  Please see my own story in the link above.

2. Historical evidence both here and in countries where such laws have been enforced for years show that regardless of the limitations or narrow verbiage of the legislation, said laws foster abuse, and expand to a scope beyond their original intent. Those impacted are vulnerable populations including those with disabilities the elderly, and those with a psychiatric disability.

3. The bill places medical professionals in an untenable position complicit in hastening the death of patients rather than fighting for their lives and dismisses the role of an entire branch of medicine dedicated to palliative care.

4. There is clear evidence that similar laws have already been  interpreted by insurers as a way of denying services for terminally ill patients who fit the diagnostic criteria for assisted suicide but wish to fight to continue to extend their lives, placing vulnerable patients in unethical positions while allowing insurers to push the end of life option to reduce costs.

No medical professional can accurately estimate the lifespan of any patient. Thus the inherent risk in basing a law on the idea of a medical declaration of a limited lifespan.

As I stated in my testimony last year:

" I am a resident of Montgomery County, and mother to a wonderful 13-year-old boy with multiple intellectual disabilities and nonspeaking autism.  Our son has many health challenges. I have a deep concern that if this bill becomes law, it will expand away from its intended purpose and become a danger to patients like my son.

The example of the Netherlands is a clear indicator of what happens when assisted suicide laws exist to be expanded upon. Quoting the Disability Rights Education and Defense Fund’s research into this matter:

“Herbert Hendin documented how assisted suicide and lethal injections have become not the rare exception, but the rule for people with terminal illness in the Netherlands."

"Hendin stated in Congressional testimony, “Over the past two decades, the Netherlands has moved from assisted suicide to euthanasia, from euthanasia for the terminally ill to euthanasia for the chronically ill, from euthanasia for physical illness to euthanasia for psychological distress and from voluntary euthanasia to nonvoluntary and involuntary euthanasia. Once the Dutch accepted assisted suicide it was not possible legally or morally to deny more active medical [assistance to die], i.e. euthanasia, to those who could not effect their own deaths. Nor could they deny assisted suicide or euthanasia to the chronically ill who have longer to suffer than the terminally ill or to those who have psychological pain not associated with physical disease. To do so would be a form of discrimination. Involuntary euthanasia has been justified as necessitated by the need to make decisions for patients not [medically] competent to choose for themselves.”[106]”

“Hendin has also described how the government-sanctioned studies suggest an erosion of medical standards in the care of terminally ill patients in the Netherlands: 50 percent of Dutch cases of assisted suicide and euthanasia are not reported, more than 50 percent of Dutch doctors feel free to suggest euthanasia to their patients, and 25 percent of these doctors admit to ending patients’ lives without their consent.[107] Further, he reported that, for a thousand people each year in the Netherlands, physicians have ended their patients’ lives without consulting the patients.[108]”

Our State legislature voted to make physician-assisted suicide a felony in 1999, and rightfully so. This bill is very open to the abuses and decline of palliative care happening in the Netherlands. It makes me fear for our son’s well-being and for the future of our great State. Our General Assembly is ahead of its time in many decisions it makes and laws it passes, but this bill is not a step forward. I fear it is a step off a cliff."

References and Resources:

Where The Prescription For Autism Can Be Death
http://tinyurl.com/hjleqwk

House Bill HB0404

The Furor Over Death Drugs and the Cases of Barbara Wagner and Randy Stroup

Disability Rights Education and Defense Fund Policy on Assisted Suicide

My Terminal Illness Survival Story as testimony before Maryland Congress

Friday, January 22, 2016

Autistic While Black: The Erasure of Blacks From Histories of Autism


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
Wiltshire drawing Madrid credit http://www.stephenwiltshire.co.uk/
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/
Google
search topic: Black Autistic Savants
Wikipedia Thomas Fuller (Mental Calculator)
https://en.wikipedia.org/wiki/Thomas_Fuller_(mental_calculator)
The Ballad of Blind Tom
www.blindtom.org
The Wise Foolish Ones documentary
https://youtu.be/KCBdZ7rI9jI
Eugene Hoskins Was His Name 
http://www.slate.com/articles/health_and_science/science/2012/02/eugene_hoskins_the_black_autistic_man_who_crossed_paths_with_william_faulkner.html
An Anthropologist On Mars: Seven Paradoxical Tales by Oliver Sacks http://www.amazon.com/dp/0679756973/ref=cm_sw_r_tw_dp_c2EOwb1S0TGBG

Monday, October 19, 2015

Random Thoughts at The Intersection of Race, White Privilege, and Disability Rights Advocacy


Black letters on a white field read "No one is asking you
to apologize for being privileged; people want you to
stop using your privilege in ways that require an apology."
Ilana Alazzeh
I've spent the weekend thinking about Ted Landsmark, Danuta Danielsson, Edward Crawford, the miseducation of KKK children, the dominant and at times toxic culture in disability rights activism, and what happens when marginalized people intersect with white privilege. Occasionally I think in pictures. So let me share the people I'm discussing in the way they came to mind as their lives intersected with mine.

In 1976, when I was 15 years old, Stanley Forman took a photograph during the fight to desegregate Boston schools that won a Pulitzer Prize the following year. That day Ted Landsmark became the victim of white protesters like teenager Joseph Rakes, who tried to assault the civil rights attorney with a flagpole bearing the American flag.
Pulitzer Prize winning photo "The Soiling of Old Glory" ©Stanley Forman
Mr. Landsmark later assured investigators that Rakes was not trying to spear him but was in fact swinging the flagpole in the photograph from side to side trying to hit him with it. This simple statement on Mr. Landsmark's part may have saved Mr. Rakes from paying the price for his hatred his entire adult life. Anti-bussing protesters beat Mr. Landsmark severely that day. He was fortunate to have escaped permanent injury.  Rakes was arrested for assault with a deadly weapon. It may or may not surprise readers to know his jail sentence was suspended.

The snapshot of the violent Boston anti-bussing protests punctuated by incidents like the assault on Ted Landsmark  emphasizes that poor or working class white people become conciously aware of their privilege only when they view it as being under threat, at which point they lash out to preserve it.

The majority of violent white anti-bussing protesters were considered "good hard working people of faith" who became aware that their children had the privilege of attending segregated public schools and fought violently to retain said privilege only when they were ordered to adhere to federal law requiring they include Black students in their schools. This historical event counters the common misconception that white privilege is a false construct because a white person who is working class or poor has no inherent privilege in society.

These events took place in Boston over 20 years after Brown v Board of Ed of Topeka, Kansas, in Massachusetts, not in Alabama or Mississippi. This should also emphasize that racism is not limited to one geographic area, disparities and crises driven by the racial divide are in fact equal; just expressed differently in the other areas of the country.

In April of 1985, when I was in and out of hospitals with my asthmatic 2 year old daughter wondering if a move to Europe from Turkey was the best thing for my little one, Danuta Danielsson witnessed a demonstration in Växjö, Sweden and, unable to control her outrage at seeing the nazi-skinhead marchers supporting the Nordic Reich Party she rushed out, hitting one with her handbag. She was 38 at the time. Ms. Danielsson was of Polish Jewish origin, and her mother had been placed in a concentration camp during World War II. 

Woman hits Neo-Nazi with handbag, ©Hans Runesson
Ms. Danielsson was not arrested or charged for her actions. Attempts to install a sculptural depiction of this photograph were rejected by local Swedish politicians of the Centre Party for fear it might promote violence.

I and most people at the time empathized with Danuta Danielsson and grasped why she would strike out at someone young and ignorant enough to brazenly march in support of an anti semitic political party despite knowing the barbarity and scope of the holocaust. No charges were filed against her.  She actively avoided the press or any notoriety for this act or the photograph that immortalized it.

Can we all accept that this act did not deserve to be labeled an act of violence?
  1. Ms. Danielsson appeared to react spontaneously upon being triggered by those marching.
  2. Doesn't the circumstance of her being a traumatized member of a marginalized minority that was the target of genocide by those who established the philosophy being supported by the target of her attack, justify her behavior?
  3.  Should survivors of atrocities and their families be made helpless witnesses to the power of  those born with white privilege who were never targets of mass genocide, using that privilege to legally impose and promote white supremacist political views that justified the mass murder of millions of innocent people? 
Whatever the intent of this party and those in it, they are cogs in a greater wheel that abuses white privilege to drive discrimination by perpetuation of beliefs we know are untrue. These negative constructs are constantly retaught to white children, and they grow up, regardless of anything else that might make them divergent from their peers, with this persistent and ingrained parasite of hate that invades them and propagates such that it is passed on to their children and grandchildren effortlessly.

“White power structures often persist independently of the good or bad intentions of White individuals.”  
 - Dr. Katherine Tyler
Last August, 13 years after coming back home and witnessing an increasing polarization of the country along racial lines, I was still reeling from the increasing shootings of Black people and trying to follow the nationwide protests online when photographer Robert Cohen's picture of 25 year old Edward Crawford, the "flag and chips man" of Ferguson, Missouri went viral on social media. Mr. Crawford was caught in the middle of lobbing a tear gas can shot at the children of protesters back at police while not disturbing his bag of chips. Initially this photo was misrepresented by some media outlets as a Black protestor throwing a molotov cocktail.
Edward Crawford, 'whose bag of chips read "the flavor of America's heartland"
throwing a flaming tear gas canister duringFerguson protests @Robert Cohen

I always wonder what white people who are clueless of the impact their own white privilege has on their lives, thought when they first saw this photograph. Because I know that it was probably not what I was thinking. When all these events were unfolding I wondered how those of us trying to fight hate enabled by the abuse of white privilege could overcome the miseducation of white people who refuse to acknowledge their own privilege. How could we explain topics like structural racism to people who don't acknowledge their own complicity in this abusive cycle? How can we show academics and graduate students in fields like disability studies who don't really care how the misuse of white privilege influences their work, the way they view and present facts can cause harm?

Ignoring this bias infuses content with constructs that perpetuate and preserve the prejudices that impose the greatest disparities in how disabled POC in general and disabled Black people in particular receive a free and appropriate education, therapies, state supports, and critical health care. When white privilege is misused to justify deliberately ignoring how content promotes racism,  disabled Black children are misrepresented, research is driven and founded on stereotypes, and disabled Black children are denied the cognitive, physical, and emotional fitness needed to survive and self advocate in society and this continues mistaken beliefs like, for example, the fallacy that Black autistics express autism more severely and have greater challenges because of their race. In fact how autism presents has a great deal less to do with race and a great deal more to do with delays in diagnosing autism and the resulting disparities in all the services and accommodations needed to support Autistic children of color in general and Autistic Black children in particular.

Worse, this lack of willingness to understand terms that don't mean what most presume they mean attaches a stigma to them that distances white people from trying to change. Wrong headed ideas based on modern stereotypes, like the concept that being a political liberal, dating outside one's race, having Black friends and colleagues, or being highly educated exempts a white activist from thoughtlessly perpetuating structural discrimination is dangerously flawed. This attitudinal erasure keeps regenerating a mentality that views Black people as less than rather than equal, a collective 'problem' to be dealt with and Black disabled people as a 'greater societal burden' than white disabled people.

 Child of Klansman meets Black State Trooper
 photo by Todd Robertson, credit Southern Poverty Law Center
I have hit a wall of insensitivity and erasure on how to explain this to my own colleagues. I can't constantly be in the position of appealing to activists and academicians who are supposed to care about my son and his peers as much as they care about white disabled people. I felt it was possible to present things to reasonable people and have them first be willing to look in the mirror and  then analyze where they may need to make changes in how they present disabled people of color in essays on social media. That requires that people respect Black disabled activists first, respect marginalized activists' topic expertise, and have a willingness to accept the world as it truly is not only for them but for disabled people of diverse races and cultures about whom they may be ignorant. I did not think that was such an impossible thing to ask.

It turns out it is.

Like everything in the conversation of structural racism, telling authors and bloggers that their misuse of white privilege is fostering presumptions that are negatively impacting their content is apparently highly inflammatory.  The term 'white privilege' makes everyone squirm. They don't want to be labeled someone whose white privilege has gone wrong in their academic work or online content generation. So they do what many do when confronted by someone with an inconvenient truth online: they mass their followers and begin a flame war.  All manner of gaslighting and other unpleasantness will ensue. But the actual concern, that something in any given content may perpetuate structural racism or denigrate Black disabled people ends up derailed and dismissed.

This is my fault too, because I let other white colleagues who truly want increased diversity in the disability rights community convince me that if I tried to educate, activists would listen and this was simply not true.

Understanding that I have wasted four years of my life thinking I could explain and colleagues would read and listen is tough. But it is also good to divest myself of this fruitless pursuit without bitterness and with the realization that it is not the job of the marginalized person to constantly teach to the privileged group. It is time to focus on things that might just truly make transformative change for my own people, my son, and his peers.

The presumption that writing would give me a voice that might be heard was not completely accurate. Blogging gives me a voice. But those who need to change do not heed it and that means this path to trying to change minds is failing.The disadvantage of heeding those who speak out about not inadvertently perpetuating racism in disability rights activism is that no one can gain anything but a clear conscience from listening to such voices. There is no academic, fiscal, or professional profit in presenting information in a manner which isn't offensive. It is just the right thing to do.

A friend and colleague who does great things offline told me he could not do what I do online. He said no matter what I write to try and reach people, they will resent, react, troll, and insult me. I am beginning to agree with him and am exploring ways reinvest the limited time I have for activism accordingly.

 Online blogging will probably continue, but with no expectation or hope of impact, and with no presumption that persons with white privilege who are academicians or disability rights activists who need to change will heed or respect voices like mine. It will simply be an exercise in expressing my thoughts and leaving them for my son, in the hope that he may someday understand the words I've written. He should know that his mother tried to do something to make the world a safer and more just place for him, even if she failed.

Of all the labels I carry, the one I am proudest of, my race, is going to continue to be the most marginalized. No outward displays of superficial willingness at equality or diversity will change the bias and disparities inherent in the disability rights conversation until those who dominate it are willing to see how the abuse of white privilege impacts their work and act to correct harmful things perpetuated by this without the presumption that white privilege or even racist actions are stigmatizing permanent labels meant to ruin their reputations. The lives of Black disabled people hang in the balance of understanding that the road to healing the racial divide in our community is to first accept when things like white privilege abuse driven structural racism are identified, even when what is exposed is internal.

Peace


Resources and References

About Activist Ilanah Alazzeh
http://genchange.wikia.com/wiki/Ilana_Alazzeh

Brown v Board of Education
http://www.ourdocuments.gov/doc.php?flash=true&doc=87

"The Soiling of Old Glory"
https://en.wikipedia.org/wiki/The_Soiling_of_Old_Glory

The Photography of Hans Runesson
www.hansrunesson.se/

A Woman Hitting a Neo-Nazi With Her Handbag
https://en.wikipedia.org/wiki/A_Woman_Hitting_a_Neo-Nazi_With_Her_Handbag

 About The Iconic Ferguson, Missouri Protest Photo
http://www.fastcompany.com/3034842/innovation-agents/3-things-that-turned-this-photograph-into-a-ferguson-icon

About Dr. Katherine Tyler
http://socialsciences.exeter.ac.uk/sociology/staff/tyler/
http://socialsciences.exeter.ac.uk/sociology/staff/tyler/publications/

References: Towards a Bibliography of Critical Whiteness Studies
http://nathanrtodd.netfirms.com/documents/Spanierman_Todd_Neville(2006)Whiteness_Bib.pdf

A moment of hate free interaction: Klan baby meets Black State Trooper
http://www.poynter.org/news/mediawire/199985/how-kkk-rally-image-found-new-life-20-years-after-it-was-published/

Tuesday, September 22, 2015

Flowers v Gopal: Ugly Laws, Amistad, Blind Tom Wiggins, & The Legal View of Autistic People

"From the late 1860s until the 1970s, several American cities had ugly laws making it illegal for persons with "unsightly or disgusting" disabilities to appear in public. Some of these laws were called unsightly beggar ordinances."
Ugly Laws, Wikipedia

Political cartoon stereotyping poor disabled in New York City © Library
of Congress


Today a hearing on discovery motions was scheduled to take place at  9am, in San Jose in the case of R. Flowers, Et Al v V. Gopal, Et Al.  The plaintiffs are continuing to demand a permanent injunction against the Gopal family's autistic son, despite the fact that the Gopal family no longer lives in the neighborhood and neither do the Flowers. The plaintiffs claimed that the presence of the Gopal family's child in their neighborhood dropped property values. Actually, the fact that the Flowers' were renters dropped the property value. The Gopal family owned their home. I am trying to grasp how saying a 9 year old child appearing in public can drop property values is not invoking the ancient "Ugly Laws", and how people can feel comfortable putting this on legal documents and presenting it in court in this day and age. 

The Autism Society views the potential for harm against families who have autistic loved ones as great if lawsuits of this ilk become a pattern. Sadly they never mention the harm that is being incurred by the child himself or those who share his neurology.

Some experts wonder how this case progressed at all. Quoting the San Jose Mercury News:

"Stephen Rosenbaum, a lecturer at the UC Berkeley Law School, who specializes in disability rights and is familiar with the lawsuit, said he is surprised the case has continued as long as it has."

""This is something that should never have gone to court, in my view," said Rosenbaum, who is also an associate professor at Golden Gate University School of Law. Instead, he said, it should have been resolved through an informal dispute resolution process or mediation; sources, however, say that route failed."

I do agree with professor Rosenbaum's professional opinion that an informal dispute process or mediation is the route through which this dispute between three former neighbors should have been resolved. I also believe autism advocate, parent, and attorney James Gallini is quite accurate in his observation of this case:

"This is a very dangerous lawsuit in California and, because of the legal definitions of 'nuisance' and 'public nuisance', dehumanizes our autistic citizens by defining them as something other than human to be controlled or removed and as chattel (an item of property other than real estate). The Judge in this case did enter a temporary injunction against this family and their child. In short, a restraining order to prevent "irreparable harm" to the community and property while the legal issues are being heard."

My fear is that the preponderance of recent court cases are by adjudication placing a de facto label of human chattel on people with invisible disability in general and autism in particular. One could almost define recent legal cases in disability rights case law in California, and I am thinking of cases like San Francisco v Sheehan, as echoing  structural ableism remaining from the infamous  "Ugly Laws," the first of which appeared in 1867 in, by sad coincidence, San Francisco, California. 

This is a typical example of ugly public comments left
under local news articles about R. Flowers v V. Gopal. As you can see
Ms. Schroeder takes the opportunity to vent her resentment
 of what she terms "3rd world immigrants" says "How about India footing the bill?"
and other hateful comments referring to keeping children on a leash
and  the idiotic idea that autistic children have,
and this is in all caps "NO DESIRE to play with other children.;
IT IS A FACT." She is a perfect example of the taint of ableism & ethnic biases
this case is bringing to the surface. 
By finding legal ways to strip neurodivergent people of their competence in court, our legal system erases them from their own trials, and this opens the door to a terrifying future of reverting intersected disabled members (please note the Gopal family is an ethnic minority) to the distancing and dehumanizing status of "human chattel"  at a time when a visible resurgence in  a polarized public's affection with eugenics and euthanasia is resulting in the passage of laws that threaten disabled people and their families outright. The rights of disabled people to community access and self determination guaranteed by the American's with Disabilities Act and the Olmstead decision can potentially be legally whittled away by these types of legal cases. All under the gateway guise of public nuisance litigation; all the while plaintiffs like the Flowers miseducate the public that somehow the threat is the disabled person rather than the bias at the intersection of ethnic hatred and ableism that drives the negative way intersected disabled people are treated in their own communities.

Proctors answering document in U.S.
v Amistad © National Archives
I am a Black woman, and therefore am painfully aware of what the status of "human chattel" means within American caselaw. The primary challenge to abolitionists during the attempt to defend the free African men and women captured in Sierra Leone and sold into slavery illegally, was the concept that in the United States, anyone who fit the definition of a Black slave was considered "human chattel". Despite the fact that all parties in the case of United States v. Libellants and Claimants of the Schooner Amistad agreed that these men and women were born free and were sold into slavery in violation of international laws, in our court system they were considered property. They had no voice in the series of trials on which their freedom hinged.  The case was escalated through the court system and was eventually won because "attorney Roger S. Baldwin successfully argued this case to the Supreme Court by the use of narrow, property-law based arguments rather than moralistic, broad-based attacks on slavery itself" knowing that any argument of their humanity would not sway the court to free them. In the end only 35 men survived the ordeal of years of unjust imprisonment in horrid conditions and bitter litigation to be freed and returned their homeland.This is what it means to be legally labelled "human chattel." So the successful injunction against this young child should disturb our entire community, as should the inherent violation of the child's right to privacy in the plaintiffs' demand for this child's entire school and medical records. It is a clear indication that the plaintiffs cannot otherwise meet their burden of proof and seek instead to use evidence directly related to this child's disability against him to make their case. Think about the implications of that. It implies that a person who has any invisible or psychiatric disability has no expectation of protection if someone wants to cash in on behavior related to said disability. Should treatments and supports delivered to assist a child in the classroom and at home be used against then in a case where there is insufficient event based evidence to collaborate the plaintiff's claims of public nuisance in court?

In our country, those who are different lose the legal right to any expectation of privacy for themselves and their children.

Poster for Tom Wiggins ©Word Stage
I should also discuss the case of Blind Tom Wiggins briefly because the fact that he was both born a slave and an autistic savant made the tragedy of his life that much more relevant to the case of Flowers v Gopal. The litigation for possession of Tom, whose earnings as a world renown pianist were estimated at the equivalent of $5 million dollars today, was bitter and lengthy and continued as long has he was earning money touring. Meanwhile Tom was locked up in a series of hotel rooms while a series of owners squandered his earnings. After the Emancipation Proclamation  and the end of the Civil War, Tom remained a slave. He was in fact called "The Last Slave in America" at one point. The ex wife of one of his owners finally won ownership of him by tricking his mother into suing her ex-husband's kin for her son's emancipation. Once freed, the woman convinced Tom's mother to sign guardianship of him to her. In order for anyone suing for ownership of him to keep complete control of Tom regardless of the Emancipation of all slaves, he had been declared insane and thereby legally within the category of "human chattel". Abuse of intersected autistic people through legal means is just that old and just that simple.

In fact one of the foundational issues with the way that autism as a disability is dealt with in our society is this attitude that autistic people are de facto chattel unless they continually prove their competence. This frightening attitude is at the heart of deadly results like the infamous case of Kade Hanegraaf, an autistic teen who at 14, was the victim of "debarking" surgery  because his parents saw him as "human chattel" and therefore consented to this monstrous procedure.  Please see Lydia Brown's moving essay on literal silencing for detailed information here.

I hope you can all see how critical the presumption of competence is to the entire autism community.  It continues to confound me that other parents fail to see how critical this is, and how damaging the presumption of the incompetence of our own offspring has been to our community.

In this entire litigation, we do not know:

1. Why Robert and Marci Flowers and their former neighbors insist on continuing this legal action when the Gopal family moved away from the neighborhood months ago, and the Flowers have since moved from it as well, and how this pursuit of monetary gain through legal action despite the fact that the Gopal family has done everything to accommodate the plaintiffs, including leaving their home of seven years, is not discrimination based on the child's disability;

2. What the autistic child in question's ability to communicate is, and whether he can communicate and therefore give testimony in his own defense;

3. Why there has been no mention of the child's rights under the Olmstead decision and the ABA to community access  with supports, and whether or not, once behavioral supports were put in place for this young man whenever he entered the local community, the continuance of this case actually violates of the child's right to community access.

4. Whether the court's injunction was made after the child left the community in question, which would make no sense and whether further permanent injunctions in light of the fact that both one of the plaintiff families and the defendant family no longer reside in that community, are violating their rights as well.

5. What has been done on the part of the defense team to insure the Gopal family is not being targeted  based on their ethnicity and insure no bias is present in the court proceedings against them? How much of what is going on here is simply a lack of understanding of cultural differences that have led to this escalation?

Most of what has driven this case, and what drives this type of lawsuit is the goal of monetary gain against defendants who appear wealthy. It seems past time for privileged autism families to take notice. This case is dangerous because it can give bad people the idea that they can trump up charges against autistic people who may be unable to respond or defend themselves and sue wealthy autism families for damages. It is also a dangerous byproduct of the way autism is presented by  organizations who insist on displaying autistic children and adults as helpless, raging, human chattel, thus stripping them of human rights, destroying their access to their communities and causing great harm to those who they claim to advocate for. Our community needs to urgently work to change how the public and the legal system view autistic children and adults. If we don't, our loved ones will pay the consequences.



Resources and References:
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R. Flowers, Et Al Vs V. Gopal, Et Al
http://tinyurl.com/njfoezw
http://www.sfautismsociety.org/blog/neighbor-lawsuit-seeks-to-declare-autistic-boy-a-public-nuisance
http://www.contracostatimes.com/breaking-news/ci_28832427/sunnyvale-neighbors-sue-banish-autistic-boys-family-claiming

San Francisco v Sheehan
http://thinkprogress.org/justice/2015/05/18/3659969/supreme-court-justices-wont-let-mentally-ill-woman-sue-police-shot/
http://www.scotusblog.com/case-files/cases/city-and-county-of-san-francisco-california-v-sheehan/

Harm from the "Human Chattel" attitude embedded in Structural Ableism
The Literal Silencing of Kade Hanegraaf
http://www.autistichoya.com/2013/09/literal-silencing.html
http://www.salon.com/2013/09/27/is_surgically_altering_an_autistic_boys_voice_cruel_or_kind/

Violation of Disabled Bodies for Caregiver convenience - The Case of Ashley X
http://content.time.com/time/nation/article/0,8599,1574851,00.html

Lifelong Violation of Human Rights: The Case of Autistic Savant Blind Tom Wiggins
http://www.blindtom.org/who_was_blind_tom.html

Kidnapped Africans as "Human Chattel" In American Caselaw:
https://www.archives.gov/education/lessons/amistad/proctors-answer.html
http://law2.umkc.edu/faculty/projects/ftrials/amistad/Ami_trialrep.html
http://law2.umkc.edu/faculty/projects/ftrials/amistad/AMI_BBAL.HTM

The Ugly Laws
https://en.wikipedia.org/wiki/Ugly_law
https://madeinamericathebook.wordpress.com/2011/01/19/ugly-or-needy/
http://www.loc.gov/pictures/item/2006681441/