Showing posts with label eugenics. Show all posts
Showing posts with label eugenics. Show all posts

Wednesday, January 15, 2020

Cognitive Dissonance and The "Aspergian" Question

"The genius of apartheid was convincing people who were the overwhelming majority to turn on each other. Apart hate is what it was. You separate people into groups and make them hate one another so you can run them all."
-Trevor Noah
Born A Crime

It is my opinion that the history of the term "Aspergian" is so rife with ableism and eugenicist ideology that nothing may redeem it. I say this knowing that had I been born in the late 1980s or 90s, this term, which is today conflated with the term Aspergers,  might have been added to my own "gifted" label.

My son is considered Black under the one-drop rule.
 He is a diagnosed nonverbal autistic.
Image of a Hispanic male presenting youth  with
curly dark brown hair and tan skin clean-shaven in
a wheelchair drinking a bottle of water Image
posted with permission of the subject.© Kerima Cevik 
In the fall of the past year, I was bombarded with a rage tweetstorm by individuals who felt I was threatening their identity by tweeting my views on the Aspie supremacist nature of the fabricated term 'Aspergian' and for that matter the eugenic past of Asperger himself ("He joined several organizations affiliated with the NSDAP (although not the Nazi party itself,) publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child 'euthanasia' program"). Eventually, I chose to stop trying to justify my position or explain it in any way because I realized that no matter what facts I had to back up my points, what I had to say would never be accepted.

So what I am writing here is for readers who truly want to understand my point of view on the topic of Aspie Supremacy, Aspie Segregationism, the Aspergia Island myth, the error of using the term Aspergian interchangeably with Aspergers and Aspie, and how the language of Aspergian promoters so closely resembles white nationalists post-election attempts to change their lexicon of terms to make white supremacy more acceptable to mainstream audiences that I began to push back against the use of the term Aspergian entirely.

I also need to remind people that this is my perspective, based on how things are right now in the United States, and how much damage and hatred is harming us all by building these disability hierarchies within already marginalized communities.

What made me so sure that explaining the link between eugenics, disability and racism, and how this informed the Asperger supremacist philosophies that gave rise to the Aspergia Island concept and later the conflation of the term for citizens of fictional Aspergia, i.e., Aspergians, would make no difference to those people who identify as Aspergians?  It has to do with how people hang onto desired identities even when presented with any factual evidence to the contrary. An excellent example of this rejection of any identity viewed as less acceptable to society is the story of Susie Guillory Phipps, and how an unknown fact can induce cognitive dissonance that results in serious emotional reactions in people.

Susie Guillory Phipps' Crisis of  Racial Identity

Susie Guillory Phipps and her husband Andy went to request her birth certificate to apply for a U.S. Passport needed to travel to Europe. But when Susie got her birth certificate "she was, as she put it, "flabbergasted and sickened" to learn "the state's Bureau of Vital Statistics had her down as ''colored.'''

''I'm not light,'' she said, pointing to her face. ''I'm white.''  But the State of Louisiana had a surprise for Susie. A genealogical record going back 222 years to a maternal ancestor, a black slave named Margarita. Margarita was the daughter of white planter John Gregoire Guillory and an unknown slave. So Susie's race was not determined by 222 years of white ancestors but by a 1970 Louisiana law that codified the "one-drop rule" meaning if a person had one thirty second percent "negro" blood that made them "colored".

The idea that she had a black ancestor, even in 1982, was such a shock to Susie Phipps that she upended her entire way of life to reject this truth. She believed she was suddenly not accepted in the most privileged caste of her state. She vehemently denied any ancestry that linked her to the caste of least privilege. The cognitive dissonance was too great. In her own words, "sickened" by the idea she could be "colored", Phipps spent over five years and $20,000 demanding in court Louisiana change her race on her birth certificate to "white." Before the one-drop rule applied to her, Susie probably never gave racial identity a thought. But once such a rule directly impacted her class and race privilege she reconciled a fact about her ancestry by rejecting it.

Informed by eugenics, white supremacy remains part of the structure of society in Louisiana and much of the United States. Even now. Mrs. Guillory Phipps's identity crisis and desperate efforts to get her suddenly 'lost' white privilege back demonstrate that individuals faced with a choice between any uncomfortable revelation that places their perceived identity into a lower status and a pleasant myth that allows higher societal privilege they will choose the myth every time. They will passionately defend the myth, and they will abhor the idea of being associated with anything they view as a less privileged or exclusive identity.

I began writing about the harm done at the intersections between racism, eugenics, and autism through the stories of individual autistic youth and children when my son was constantly harmed because of these biases against him. Within the autism community, there are parents, professionals, and adults who segregate and classify autistics by their ability to use verbal speech, their degree of disability, the degree to which their autistic loved ones can mask any outward sign of their disability. or their achievement potential. Some parents weaponize complex support needs nonspeaking autistics like my son to justify usurping the right to dominate discourse about autism resources and public policy, thereby controlling funding and decisions about my son's quality of life that should belong to him. Others use the Asperger's label as both a stick to beat their offspring into what they hope will be a path of being indistinguishable from their typical peers and a way to show superiority over parents of nonspeaking, complex support needs offspring. Then there are those folks whose entire identity hangs on carrying the Asperger's label in the way Susie Phipps needed to have the label "white" rather than "colored" to somehow prove her right to access all the privileges of being in what she considered the upper caste of an apartheid-like social system.

When the American Psychiatric Association updated its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and renamed the diagnosis Autism Spectrum Disorder (ASD), dropping the sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder), all hell broke loose.  Parents who wanted complete control of the autism conversation demanded a "severe autism" subcategory. Parents who wanted their children presented consistent with the "little professor" myth and wished to distance themselves from autistics with ID/DD labels wanted to keep their Aspergers labels. Others wanted more. They wanted to be another degree of distance from the rest of those with the ASD diagnosis. They rushed to embrace the fabricated label "Aspergian."

In 1999, Aspergia Island, an imaginary island state, was created by a group of people who wanted to design a culture in which their genetic differences were a mark of human evolution. They built an online site that tried to establish a full-blown virtual nation, including passports for members, a logo, and an origin myth. The myth of being diasporic refugees from the Aspergia utopia drew a following that filled chat rooms and threads with disturbing rhetoric. They flirted with eugenic based language, the idea that perhaps they, diasporic Aspergians, were the next phase of human evolution. They discussed their own intellectual advantages. While much modifying of the original messaging happened as more information on autism positivity and unity spread online, the underlying message of Aspergian superiority and the emotional need to build an identity of higher status based on the name Aspergian was passionately embraced by those who wished to separate themselves from other autism community members. 

In 2007, John Elder Robison published his memoir Look Me In The Eye. He identified himself as Aspergian, thus doing irreparable harm to the autism community by perpetuating what amounted to a North American rule of hierarchy-of-disability-based hyper/hypodescent to autistic identity. Late diagnosed at 39, Robison spent years dealing with internalized ableism, and this was unfortunately reflected in his writing. Robison's books became bestsellers and expanded the Aspie separatist culture globally. Other famous autistics, most notably Temple Grandin, was justifiably taken to task for making ableist statements against autistic youth with ID/DD labels and complex communication/support needs.  In her book Thinking In Pictures, she says

In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.
 After 2007, the rift between families wanting to distance themselves from those who could not mask autistic traits and those who did not want funding and support given to autistic children and adults who could pass for typical intensified. The resentment of families whose loved ones required lifetime support and services and who could not mask ID/DD labels became toxic online. Wealthy parents wanting to be free of their complex support needs offspring began using their wealth and influence to lobby for institutionalization. They learned to present institutional settings as less toxic places by changing the labels used to describe them, but this continues to be the goal.

The Aspergers label is still used in other parts of the world, and it is an identity that those who own the label are so emotionally invested in that like Susie Guillory Phipps, any idea of replacing it with any label of less status causes such cognitive dissonance that people will react as she did and drop everything else to protect the risk they will lose their perceived identity. Those like me who believe that it is critical to understand that autism as a single label allows everyone to receive every right to needed services and health support throughout their lives will continue to be viewed as threats to this need for holding on to the identity of most privilege.

Parents of those who wish to distance themselves and their offspring from any hint of association with the more marginalized "autism" label continue to demand a return to the Asperger's label in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5). I will continue to state that Aspergian is a harmful term, it should not be conflated with Aspergers or Aspie. I believe that at least here, in the United States, the DSM change that collects all subcategories into a single disability umbrella was the right thing to do.

My son is autistic. There was never any chance, even when the label existed here, that he would be diagnosed with Aspergers. He is one of the folks autistics like Temple Grandin consider collateral damage and that is not acceptable to me. Everyone who insists on demanding I accept the term Asperigian in this community should take a deep dive into the history of the term, why those who use it refuse to accept factual information about the toxicity of it and explore the internalized ableism inherent in perpetuating a term meant to make those like my son less in a hierarchy of disability to feed their own need for an identity of misperceived higher privilege.

One last note. Supporters of a magazine that uses the term "Aspergian" insist that Googling the term proves that the magazine's publisher has succeeded in redeeming it. I disagree with this because of the way Google searches work. What these people are viewing are search results based on their personal search histories and preferences, not what will result when anyone else does the same search.  "According to Google, personalized search gives them the ability to customize search results based on a user's previous 180 days of search history, which is linked to an anonymous cookie in your browser. ... By tracking search results Google attempts to provide the most useful and relevant content based on your search"

Resources and Further Reading
——--------------
https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html
United States v. Bhagat Singh Thind, 261 U.S. 204 (1923)
https://en.wikipedia.org/wiki/United_States_v._Bhagat_Singh_Thind


Monday, October 27, 2014

Disparity in Health Care: Malpractice, Euthanasia, and 60 Minutes' "Breeding Out Disease" Episode

My son is convalescing. He was very ill, he was in pain, and I was in an agony of grief. So heartbroken that my heart reacted and that sudden shortness of breath, that nausea, and the sharp chest pain that doubled me over happened.  I fought to collect myself, quickly, medicate, and be there for my son. I could not end up in a hospital as well.

Image is of Mu at a much younger age asleep in another ER hospital bed
It is the worst part of being a parent. The helplessness. The horror of watching your child suffer. For parents of disabled children, a large part of our lives are spent in hospitals. Our children, throughout their lives, have medical challenges that require we buck up and stand by them. I would bear my son's pain for him if that were possible. But he has a will to live that is more powerful than almost anyone I've met in my life. He's a fighter. So when these health crises happen and he's in that ER room bed, smiling weakly at me I smile back and say quietly " let's kick some ass son". He and I fight the power. He doesn't need to say a word. I see his will to live in his eyes, and in his quiet focus on silently managing the pain. It does not become me to fall apart in the face of such courage. Since I was given the honor of calling myself the mother of such a son I must join my will to his and show him I am with him. I must help overcome every obstacle with him and stand firm. That is the job.

I know that in global disability news, the current hot button topic is Charlotte Fitzmaurice, the UK mom who, along with her husband and the hospital caring for her daughter, Nancy Fitzmaurice, successfully won a lawsuit to end Nancy's life by starving her to death. When one removes a feeding tube from an individual who is unable to receive nourishment any other way they are starved to death. I'm sorry how is that humane? So many care providing people have starved their disabled children and adult siblings to death. It is a painful, horrid way to die. Those who did where sent to prison for it. How is it that a hospital setting and court order make this okay? We are going to inflict further terrible pain on this child because we want to free her from pain. WTH?

Something else that really bothered me about the way this story played out was a very critical point that no one spoke out about. London's Great Ormond Street Hospital was responsible for Nancy's round the clock care. A botched a routine operation left 12 year old Nancy screaming in agony. Then Great Ormond Street used their resources in a legal battle in the parents' names to end Nancy's life by removing her life support systems and nutrition. No one is asking the right question. Why would a hospital do this? Who was responsible for the botched surgery that brought Nancy to this point? Why were they not held to account for it?

I pray our son is never a victim of medical malpractice going forward. I believe if such a catastrophe occurred and we were offered this option of hospital endorsed legally approved starvation as some optional remedy for any harm done him I would listen for the Twilight Zone music in the background. This idea of ending the suffering of someone who can't tell you what they want and doing it so horrifically is freaking me out. Especially now, with Mu fresh out of the hospital.

He is my almost 12 year old, my youngest, and he is still recovering from being very ill. These health episodes terrify me, because in those moments his life depends on the professionalism of the medical institutions responsible for his care. Those people may decide his life is not worth fighting to for. His life has to mean just as much as the life of someone his age who has verbal speech and and ordinary brain. It cannot mean less because he is disabled. He is not less. He is our son. I want every effort made to help him be as healthy as possible. His divergent neurology should not be factored into the quality of his medical care and when medical institutions become involved in deciding whether or not to continue life support and nutrition for disabled children my son's age the world takes on a nightmare quality that doesn't require Halloween costuming and creepy music.

The tragedy of Nancy Fitzmaurice's death was compounded by Sunday's 60 Minutes broadcast entitled "Breeding Out Disease", presenting the idea that wealthy people are now able to pay to have their DNA scrubbed clean of pesky undesired cancers and things and then have perfect, made to order, babies. It jacked that creepiness up to haunted house on steroids levels. So much like the Hitler youth program. Or Star Treks' Wrath of Khan "we are superior because we are genetically engineered to be so" tripe.  Just who defines what we "breed out". Oh and the patent for this was acquired by a doctor who will charge a crap ton of cash to do what is necessary to provide this service. There are so many ethics concerns here. So much can go wrong it would take a series of blog posts to explain.

Meanwhile, my boy is recovering from being ill. We went to the ER and they understood him. They didn't force the blood pressure sleeve on him, they asked him. When discussing how he was, they spoke directly to him, even when he did not respond. Then they spoke to us and when we were done they tried their best to explain to him what they needed to do. Each person said goodbye to him and shook his hand. The doctor remembered another ER visit long ago, when Mu was much younger and remarked to him that it was nice to see him giving his mother a hug to calm her down. They treated him like a human being whose life mattered. I don't know that we will hit the kind humane hospital staff lottery again. It is chance after all. Ableism does not ask permission to infest your life.

 Two points of human rights violations in the ghastly euthanasia issue are the questions around consent without outside pressure when the patient is disabled or cannot indicate consent, and the idea that most of what is labeled mercy killing of late is killing, with pain and horribly, then the perpetrator using the victim's disability as an excuse to say "it was an act of mercy" afterwards. Imagine a policeman shooting a Black teen and saying "It was a mercy killing." "I did it because I knew he would live in pain and poverty all his life, and I wanted to spare him." Now replace Black with disabled.

When we are all arguing about these topics, I hope we remember that the person whose life was decided without her say was Nancy Fitzmaurice. She was 12 years old. She was the victim of a routine surgery that was botched and resulted in her suffering greatly. This suffering was not a result of her disability. It was the result of medical malpractice. This hospital has taken a large step into fright night going to court for parents in order to justify depriving a patient of nourishment until she died of starvation.

Lastly, rich folk trying to pay some dude to "scrub" their DNA of cancer, disabilities and such? Yeah. I don't see that ending well. We are talking about the same professional community that botched a routine surgery and then decided the fix was starving the patient, a child, to death.

Happy Halloween my people. No need to walk the dead. Fear is here. Hug your loved ones a bit tighter this week.




Sunday, March 24, 2013

Until the Murders End

This is the last article I'll be posting for awhile. I've tried for over a year to write about this topic, but each time I've broken down. I decided to fight the sadness because I just don't have the time to continue to be silent on this. Tragedies keep happening. 

Time to explain the scrolling names at the top of my blog, and why I am listing murder victims and how they died. 

Someone commented recently that they didn't want to participate in the annual day of mourning for disabled murder victims. "I prefer to focus on happier, positive things", they said. Don't we all? But when we turn a blind eye to injustice it does not go away. It worsens, escalates. When people who consider themselves "good people" ignore injustice they enable it. Sometimes, you have to stand up for what is just, by reminding people infamy exists, and its victims are waiting to rest in peace. 

The murder of Autistic children by anyone has always upset me. I don't want to hear any excuses made for anyone who has committed such an act because my job as a special needs parent is not easy either. My son has a great degree of impairment and historically, little or no supports. He is, "like your child" if people must have that trope. I have enough respect for him as a person not to spend my life complaining about being his mom because I am one of the reasons he was born. I own my part in his coming into my life. He was, and is, a wanted and welcomed child. It is no fault of his own he nearly died on his first birthday from a deadly flu despite being vaccinated. His great challenges are not his fault. He is a heroic person. I could not be as patient, loving, or understanding as he continues to be despite the abuse he has suffered in two school placements by people who presume he is not human and is not worth their trouble. His daily perseverance in the face of overwhelming challenges to be independent is staggering. I am not half the person my son is. I am over 50 years old, and I have yet to meet someone like my son. 

So when someone takes someone like my son, a human being fighting for their own place in society, for the right to be counted as human, to be independent, to overcome their impairments, and snuffs out that light, it is as if I've been stabbed. It kills something in me. The grief is personal. 

 I want this to end. All of us want that. I think that it can only end if we do the following:

1. Remember and honor the victims. Thus the scrolling marquee atop this blog. I don't want to forget them. Ever. I'll update this post to add other sites and pages open for people to discuss and post on this topic, made to honor the dead and fight for the living.

2. Educate ourselves, then spread the word. Silence kills. It is not ok to call murdering a person a "mercy" because they are disabled. No one has the right to take a life that is not their own. How sad that people have done murder in the name of fighting for the unborn, but when those same people see that these babies are born disabled, they somehow feel it is fine to even consider dispatching them from the world. Disabled people have apparent challenges that are many times visible. Typical people can hide challenges. That doesn't make typical people superior. It just makes them different.

3. Remind every care provider, professional, and parent that the murdering a disabled person is a hate crime.  Some parents hesitate. They are afraid of scenarios where they might be the parent in trouble. Wow. Stop that. If your mind is going there, if you are that stressed, depressed, overwhelmed, run and get help. But don't support murder because you are afraid you might be the next parent locked up for harming your child. There is a qualitative difference between needing respite from care providing and committing murder.

4. I understand some families have agressive adults, or children or adults needing intensive supports and round the clock care in their families. If you cannot manage your child, continually seek professional help. Please do not listen to any employee of the system who tells you the short cut to group home placement is calling the police and using domestic disturbance calls to document your loved one is aggressive. Or that euthanasia is what your loved one would want if they could tell you. Probably the largest number of deaths from catastrophic encounters with law enforcement occur because families are told to do this to get their adult placed in a residential setting. And the right to take a life in your care is not yours.

5. Save lives. Be an active neighbor, a mindful witness, a concerned friend. If a parent, care provider, educator, or staff member confesses they are depressed, suicidal, overwhelmed, help them get help. Help them by making phone calls, bringing meals, raising money for respite, or positive behavioral supports that can help the whole family cope. If nothing else. advise they consider a compassionate removal of their loved ones into the system. But please, please, do not ignore cries for help.  And respite works two ways. There is the concept that care providers need respite. But more often than not, regular respite activities for disabled loved ones are welcomed by them as well.

So the victims will be on display on this site this Autism Acceptance Month, maybe longer. Because new murders keep happening . And they won't stop if we avoid speaking of it for more pleasant things.



In Memory of Robert "Ethan" Saylor, 26,  Steven Simpson, 18, and all those who came before them.