Showing posts with label Erasure of Disabled Adults. Show all posts
Showing posts with label Erasure of Disabled Adults. Show all posts

Wednesday, October 10, 2018

AutisticWhileBlack #SaveDarius Criminal Justice in Black and White

Darius McCollum image of an older African American Male
with a short full beard. A blurred rail car behind him.
He is wearing a black ski cap, black coat with a dark blue
zipped up inner lining. Image credit Adam Irving

“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”― Ta-Nehisi Coates, Between the World and Me

Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.

I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.

Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.

But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut- punched in the truth that everything lands with great violence upon the black body.

Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every Neili, Arnaldo, and Darius' path?

At age 53,  the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used of the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.

I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. When he was in another state, I wondered why it was not okay to give him a small bus, a supervised rural bus route, and allow him to spend the remainder of his days driving it. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.

What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?

Sometimes it is easier to see the reality of this when side by side comparisons happen. So let's look at turning points in the lives of two teenagers with the same diagnosis of Aspergers.

 Blogger Brobrubel summarizes criminal justice and government overreach by reminding us of what justice looked like for Jack Robison, and Neili Latson both were teens with a diagnosis of Asperger's  Despite the use of an ableist definition of autism, Brobrubel shows the disparity in our criminal justice clearly.
Here is his 2011 essay, Autism in black and white.

Please read it and try and understand the reality of being Autistic While Black in America.Then share this, and remember that we who are African American are the first to feel this weight of violence but we are not the last. Injustice expands like a balloon if those who believe they are protected from it ignore it.
Peace.

"The Web site Liquor & Spice caught this in the New York Times this weekend involving a 19-year-old kid named Jack Robison in Massachusetts with Asperger’s syndrome, a form of autism:
" A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion."
" By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory."
" And then caught this information involving a case in Virginia".
"Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, Va., and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his Miranda Rights or calling for backup.
After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the autism spectrum, ...  "
" Massachusetts didn’t see a crime in making explosives at home. Virginia saw a crime in waiting to go to the library. Robison was blowing things up. Latson was waiting for the library to open. Robison is rewarded. Latson is going to jail."
" "Robison is white. Latson is black." 
"We don’t want to admit it, but race does matter."

Monday, April 11, 2016

Autism Month Essays: What is Wrong With This Picture?

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

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

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

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

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

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

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


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

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

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

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

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



Tuesday, July 28, 2015

Where is Sharisa Joy Kochmeister? The War for Safety, Personhood, and Competence

Sharisa Kochmeister on her College Graduation Day
credit Facebook
The most terrifying thing that can possibly happen to a nonspeaking disabled adult happened to a dear colleague and online friend of mine, Sharisa Joy Kochmeister. She was taken against her will, placed first in a nursing home for seniors with dementia, and is now in a "host home" in an undisclosed location, the supports she needed to communicate were taken away from her, her family, concerned friends, colleagues, even her own doctor are being kept from seeing her.  In one series of unfortunate events, Sharisa is snatched away and her human rights have been snatched from her. Jefferson County, Colorado assumed guardianship of Sharisa, a brilliant, college educated autistic activist and former president of AUTCOM, The Autism National Committee. They have declared Sharisa, who when given her keyboard and safety to communicate freely tested at least 2 standard deviations above the mean, an  IQ of 47. They say she is unwilling to speak to them, therefore they reject her competence. She is not communicating, therefore she is not intelligent or competent? My God, would you speak to these creatures who rip every anchor and support you have away from you while you are in the midst of a serious health crisis, place you in a nursing home for elderly dementia patients, and then declare you incompetent? What on earth could she possibly type to them? A scream?

Sharisa used to blog at My Surreal Life. This is how she describes herself there:

"I'm 31 now, have autism, cerebral palsy, epilepsy, dyspraxia and a genius IQ; and communicate almost entirely via keyboards. I am former President of Autcom, on the Panel of Advisors on the Spectrum for the Autism Society of America; publisher and managing editor in chief and writer for "The Voices and Choices of Autism" and so on, and etc. I am also a university graduate with a dual degree in Sociology & Psychology with honors and awards; a consultant, an advocate, and a FABULOUS FRIEND! ;-)"

The tragic story of how Sharisa disappeared and is now a prisoner of Jefferson County  is succinctly stated in the Denver Post Op-Ed: Meyer: An outrageous human services case in Jefferson County

Sharisa Joy Kochmeister credit Facebook
I want to scream at them. This is like a chapter in a horror story. Now no friend or colleague is able to check her welfare nor is "allowed" to visit where she is. She has been left without communication supports. We know that she wasn't placed in the correct environment and we know Jefferson County Adult services is still in violation of the Olmstead decision and the Americans with Disabilities Act by holding her against her will. By removing the supports she needs to communicate  they have violated her right to self determination. That is how much power a state agency has over disabled people who need AAC to communicate. In one heartbeat, they can make your loved ones disappear in a quagmire of bureaucracy and cruelty and snatch every right a disabled adult has to make their own decisions, see their own friends and colleagues, and live their own autonomous lives. The erasure of everything Sharisa has achieved and what this must be doing to her mental health is devastating me. I need to make this clear to everyone. So I'm going to repeat what is happening to Sharisa and state again that this is happening over and over to disabled adults across disability constellations who need supports to communicate in crisis situations:

The following violations of Sharisa's rights under Olmstead and ADA took place:

Sharisa typing on her speech device
credit Facebook
1. Sharisa's communication device and supports were removed and she was therefore devoiced and unable to self advocate
2. She was removed to a nursing home for seniors with dementia, an inappropriate placement for her disability and a violation of the Olmstead Decision
3. Jefferson County Adult Services tested her intelligence without her speech support, therefore their finding of her IQ to be 47 is not valid as there is ample documented and video evidence to support she is an independent typer and a college graduate.
4. Jefferson County cannot simply seize control of a person competent to self advocate after blocking the disabled person's ability to communicate without that person's consent regardless of degree of disability.
4. Jefferson County is keeping Sharisa isolated not only from the supposed 'harmful' parents but also from everyone including advocates wishing to do wellness checks on her condition and her own doctor. This is not okay and is a red flag that Sharisa needs her own legal representation not a court appointed advocate that presumes she is incompetent and therefore erase her from the defense of her own right to self advocacy and self determination. Seclusion of disabled people is against the law and a violation of basic human rights.

When did we cease to live in a democracy? When did those agencies whose purpose is to protect become jailers and secret police, denying even a disabled adult's own medical professionals the right to insure their safety in this new setting? Who will be next? Because no matter how much wealth we have, no matter what power we think we wield, this can happen to any of our nonspeaking adult offspring at any stage of their lives and we their parents are powerless to stop it. One misunderstood gesture, one bitter or ableist staff person, any case worker who secretly refuses to believe that nonspeaking adults are competent, and they can take our loved ones away and we will never see them again.

This is a war for the personhood of disabled adults.  This is happening all over our country. Recall the case of Abreham Zemedagegehu, a deaf U.S. Citizen jailed for 6 weeks for a crime he did not commit, mistreated and left voiceless because the police refused to provide him with the communication supports he needed. He was Black and homeless so he was therefore guilty?

 While everyone with privilege is celebrating ADA's 25th anniversary, they also need to be fighting for our people. What benefit is privilege if it cannot save lives?

Beware the accusation of Munchausen by proxy: This accusation is at the center of another high profile case in which a young woman with mitochondrial disease was imprisoned in a Massachusetts hospital, denied treatment for 16 months, and the hospital and the CPS of Massachusetts is responsible for her health declining such that she is now confined to a wheelchair and may never recover her health completely. The story of Justina Pelletier is terrifying:  http://www.foxnews.com/politics/2014/06/12/massachusetts-dcf-files-motion-agreeing-justina-pelletier-should-be-returned-to/
The Munchausen by proxy parade of destroyed families and tragedies is endless. Jenny Lockley, the mother of an autistic young student, had her son's formal diagnosis rejected by a school that simply did not wish to provide him services and their insistence that she was "just trying to get attention" nearly destroyed her family and her life:  http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html
Here is the story of Karen, and how she and her husband lost two children to the lie of Munchausen by proxy: http://www.theguardian.com/uk/2004/feb/01/children.health
Image of Sharisa typing with her father seated on
on her left when she was featured in the groundbreaking
documentary "Loving Lampposts."


Regardless of degree of disability every disabled person has a right to self determination: the entire victory in the landmark case of Jenny Hatch, is that a disabled adult, regardless of degree of disability, has a legal right to decide where they want to live.  http://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html
If you take away a person's wheelchair you've deprived them of their mobility. If you snatch away a person's certified ASL interpreter, you have devoiced them. If you take away a nonspeaking disabled person's AAC support you have devoiced them and taken away their ability to advocate for themselves. Removing a critical support from a disabled person is against the ADA and might even be a legal assault on their person.

 I am waiting for a statement of outrage from more disability rights organizations on this. From the onset, I've been waiting for a proper petition, a form email and a list addresses to write to those in charge of adult services in Colorado. Sharisa needs her voice back. She needs her right to decide where she lives and how she lives back. Sharisa is one of the women who led the fight for the presumption of competence of nonspeaking autistic people. She doesn't deserve this degradation and isolation, nor this abandonment from the community she fought for.

All of this hoopla about the 25th anniversary of the Americans with Disabilities Act means zip if any human services entity can get away with devoicing, snatching guardianship, and obliterating all the self advocacy and self determination of a nonspeaking disabled adult. Is this the world we want for our children? I for one don't. This nightmare straight out of a Lemony Snicket novel needs to end.


Where is Sharisa Kochmeister?
Colorado: Give Sharisa her life back.

Autism Community. Fight for Sharisa. Write the Governor of Colorado, Human Services, anybody. Email Colorado law makers.

Fight. She fought for us. Now it is our turn.

UPDATE: 
There is a new petition for Sharisa on change.org: http://tinyurl.com/pqzznul
Sharisa is in what is labeled in Colorado a "host home" facility now in an undisclosed location. To our knowledge she is still being denied any assistive technology communication supports. As soon as we have a postal address or email where we can sent letters or email to her I will post it here. She needs our words of support to tell her she's not alone. Sharisa life is very restricted and now and going from a free life to the this one must be traumatic for her. Others are also blogging about her crisis situation. I'll post those effortsin the reference list.

References:
Sharisa's storyhttp://www.denverpost.com/opinion/ci_28533686/meyer-an-outrageous-human-services-case-jefferson-county
The Loving Lampposts Documentary featuring her: http://lovinglamppostsmovie.com/
What is the Americans with Disabilities Act (ADA)? https://adata.org/learn-about-ada
What is tIn Olmstead v. L.C., 527 U.S. 581, 119 S.Ct. 2176 (1999) ("the Olmstead decision"),? http://www.ada.gov/olmstead/

On Denial of Communication Supports for the Disabled 
Abreham Zemedagegehu's Story : http://tinyurl.com/qfggb3a
New: Amy Sequeniza for the Autism Women's Network: 
http://autismwomensnetwork.org/sharisa-joy-kochmeister-give-her-back-the-right-to-communcate/
Deaf couple denied interpreter fo birth of baby:
 http://www.theguardian.com/society/2014/jan/19/deaf-couple-lack-interpreter-birth-university-college-hospital-london
Deaf Mom Sues for the Right to Have Sign Language Support in Delivery Room:
http://www.miamiherald.com/news/article1984639.html

On seizing guardianship of children and adults using the Munchausen by proxy accusation: 
Justina Pelletier's Story : http://www.foxnews.com/politics/2014/06/12/massachusetts-dcf-files-motion-agreeing-justina-pelletier-should-be-returned-to/
Jenny Lockley's Story : http://www.dailymail.co.uk/news/article-2554867/The-schools-spy-Munchausen-Mums-Teachers-accuse-lying-childrens-autism-attention.html

On the Right of Neurodivergent individuals to self determination in  deciding where they live:
Jenny Hatch's Story:  http://www.washingtonpost.com/local/woman-with-down-syndrome-prevails-over-parents-in-guardianship-case/2013/08/02/4aec4692-fae3-11e2-9bde-7ddaa186b751_story.html
And herehttp://www.washingtonpost.com/local/virginia-woman-with-down-syndrome-becomes-hero-to-the-disabled/2013/08/17/0da21766-062e-11e3-a07f-49ddc7417125_story.html