vladdraculea: Rainbow Autistic Pride lemniscate over the black, grey, white, and purple stripes of the Asexuality Pride flag (Default)
[personal profile] vladdraculea
This series of posts — Adventures in Zen — is dedicated to my teachers Zen Master Jeong Ji (Anita Feng) and Eric Nord, JDPSN, of the Blue Heron Zen Center in Seattle.

[This individual post is part of the Crusade Against Hate — Why I #BoycottAutismSpeaks flashblog started by Boycott Autism Speaks.]

Ableism has been engrained in our society for so long that even many of us Disabled people have been unable to escape internalizing ableist attitudes at least at some time during our lives. Certainly this is true among many people with acquired disabilities: having once been abled, it can be very hard to learn to accept the new reality of disability, and this can result in plummeting self esteem if the ableist attitudes are not faced and overcome soon after the person has become Disabled. And for those of us born to disability, internalized ablism is something that we have been taught from a very early age, whether by family, school mates, or teachers and other authority figures. And as such it can be so deeply entrenched that some of us actually believe ourselves to be “less than”, of lesser value than an abled person despite the fact that disability is a fact of life for most people at some time in their lives.

And the fallout from ableism, whether held by (temporarily) abled people or the internalized kind I have suffered from nearly all my life till recently is manifold in everything from poor education and lack of work opportunities for Disabled people to the secondary depression and anxiety that frequently affect Disabled people who are isolated or have little emotional support for learning to accept their impairments. It can result even in suicide, particularly among people with acquired disabilities. And for some of us, such internalized ableism can result in being unable to speak out against the injustices done to us, or even result in us agreeing with our abusers that we “don't deserve” to be treated like the human beings that we are.

Ableism is a societal delusion like unto racism, sexism, and other forms of bigotry and oppression. It is a form of hate and of intolerance, and is at the root of such crimes against humanity as those regularly committed at the Judge Rotenberg Center or the atrocity that was the lot of The Men of Atalissa. And as with other forms of bigotry, ableism costs our society in economic terms as well as in our overall health, especially in the United States where healthcare is not a right.

Ten years ago, into this atmosphere of general and casual ableism stepped Autism Speaks (sometimes hereafter referred to as “A$” for brevity's sake) with its message of fear and “epidemic”, and the promise of finding a cure for the “terrible illness” that they claimed autism to be. Already there had been a few organizations whose aim was to eliminate autism by any means possible, but none had had the sheer economic power and access to media that Bob and Suzanne Wright had with their millions of personal wealth and Bob's position at GE and NBC. When Autism Speaks began launching their annual fundraising walks, it was as if all the air — not to mention money — got sucked out of the proverbial room: other organizations whose mission was more accepting of autism and Autistics began to see a sharp decline in revenue as parents unwilling to accept the Autistic children they had and desperate to “fix” them soaked up A$'s message of validation for their unloving attitudes toward their neurodivergent kids.

Perhaps many of these parents could never have been persuaded to change their intolerant and unaccepting attitudes, to learn to accept their children as they were. But at least some of them and perhaps many more over time, might have been open to changing their ableist attitudes, had Autism Speaks been willing to learn from actually Autistic people and have Autistics central to the running of their organization. Alas, they chose to use their economic and media power to perpetuate and reinforce hateful attitudes toward and fear of autism, and in doing so, they have created an atmosphere of anti-Autisticism — the form of ableism specific to the bigotry against Autistics.

I am afraid I myself may have indirectly been influenced by Autism Speaks' rhetoric. Certainly there have been times in the past 10 years where I thought I wanted a cure — when I did not understand what being Autistic really meant. At this writing I'm in my mid-40s, but it wasn't till the past two years that I have finally begun to be able to root out and turn away from such ableist attitudes. This despite having every reason to stand up for myself and fellow Disabled people and despite years of spiritual exploration in an attempt to deepen my compassion and love for all sentient beings. I say this to illustrate just how deeply the society I grew up in holds to ableist attitudes, but also to show how dangerous any organization as powerful as Autism Speaks can be by reinforcing the fear mentality that leads to abuse of Autistic children and even murder of Autistic and Disabled people by family “care givers”.

It was much easier for me to learn to see where I, as a white person, have held unconscious racist attitudes, and to overcome internalize sexism as a genderqueer person designated female at birth. And I've had less difficulty learning to see the humanity in people with opposing political views or religious beliefs I couldn't imagine ever sharing. Yet despite having been multiply Disabled since birth and further Disabled by complex chronic illness since adolescence, I was unable to escape internalizing the message from society in general and organizations like A$ in particular — not to mention from certain political organizations who wish to eliminate Social Security Disability — that Disabled people don't “deserve” to be here. It was a long, rocky path I had to take before I finally was able to even begin to accept my body and my Autistic brain the way they are. It wasn't till the past two years, in fact, that I was finally able to excise the vast amount of internalized ableism accrued over years of living in an ableist society.

Given that I've been practicing Zen meditation on and off for the better part of three decades, this illustrates just how pervasive ableist attitudes are in our society (and certainly how poor a Zen Buddhist I was, regular though my practice was for many years), that I couldn't come to the acceptance of disability in myself and in some cases in others on my own much sooner. In fact I wonder if I might never have got there without the help of people like Lydia Brown, Kassiane Sibley, Amy Sequenzia, and many, many others, who showed me the error of my previous thinking on disability by their clear reasoning and persuasive social conscience.

This is not to put down Zen, so much as to say that I, in my societal-ableism-induced pain, just wasn't ready to go there till I found some actually autistic, actually disabled teachers to help guide me to this place of love and acceptance. And it needed to happen in the way it did: maybe the route I took might in retrospect look tremendously circuitous, but every twist and turn of that journey was necessary for my awakening and eventual self-acceptance as Autistic.

This last leg of the journey began in the spring of 2013, when Lydia Brown came to Seattle to give a talk about asexuality and disability at the University of Washington. The main thrust of the talk was about the fact that yes disabled people *do* have sexuality and sexual preferences, contrary to the false notion that Disabled people are somehow inherently non-sexual beings, and that Disabled Aces are *not* people who have internalized this stereotype but are as genuinely asexual as abled Aces. I was already in agreement with this, of course, having been an asexuality activist over the previous three years since discovering at age 40 that I was not alone in lacking sexual attraction and having little interest in partnered sex. But Lydia's talk also encompassed numerous concepts that were entirely new to me, such as horizontal oppression, internalize ableism, and crip theory, the last of which I took to encompass, among many other things, Disabled pride: LGBTQ people and Disabled people have no reason to be ashamed of who we are.

At the time I attended Lydia's lecture, I had long since fallen away from daily meditation partly because of dysautonomia-related cognitive difficulties and partly for lack of a community to meditate with on a weekly basis. I'd moved to a new part of town a few years earlier and had found it harder to get transportation to the main spiritual community I did happen to belong to at the time — a very small Jewish Renewal congregation — and my memories of Rinzai Zen weren't all that pleasant, given that style did not meet my physical needs. So I was essentially without a spiritual community. But I found that reading Lydia's, Kassiane's, and many other people's blog posts, as well as participating in discussions on various social media sites, fostered spiritual growth nonetheless. It probably helped that I have a close friend whom I'm sure is destined to become a minister at some progressive church one day, with whom I talked (and still talk) about his left-leaning Christian views on various things including disability and ableism, and that he told me about a seminar at a church near me given by Thomas E. Reynolds, author of Vulnerable Communion: A Theology of Disability and Hospitality, a seminar that took place less than two weeks after Lydia's lecture. It was synchronistic to say the least.

All of this resulted in, to my way of thinking, a huge leap forward in my spiritual growth over the past two years. So much of the fallout from my internalize ableism has finally been healed — well mostly healed — since learning about the tenants of the disability rights movement such as “nothing about us without us”, the respect for people's bodily autonomy and maintaining healthy boundaries with abled people who have power over us, and our right to exist and to have our needs met in all areas of life, from where and how we live, to education, to work, etc. This in contrast to the previous several decades, where it was a huge struggle for me to get unstuck from despairing over not being “normal”.

Finally learning to accept that being Autistic is how and who I am, and that I have a right to be this way without being hated, feared, and mistreated, and that I have a right to accommodation when and where necessary, was something of a sea change. What I mean is that while I've always advocated for my needs, I did so with the nagging guilt that I didn't really deserve to have my needs met. That if anyone did anything to accommodate my needs, it was a gift, an act of charity, rather than an act of respect due me as due any other person.

In fact, it was easier for me to see the needs of others as sacrosanct, while my needs were just “selfish”. I could accept other people having physical, sensory, or cognitive needs and fight for their right to be accepted and accommodated, regardless of their ability to work or volunteer or be seen as a contributor to society in a way recognizable to an economist. In fact along the way, after meeting Lydia and later Kassiane, and reading their blogs and the blogs of others I met online, I was given a link to the late Sunny Taylor's essay on the right *not* to work and still be considered a valuable person in ones own right. That no one ought to be required to justify their continued existence by being able to “contribute” in the economic sense of the word. So it was that I shifted my activism from asexuality awareness and acceptance to disability rights and joined the local chapter of ASAN.

Over these past two years, I've largely recovered from those feelings of guilt and unworthiness. Ironically, seeing my own needs as just as valid as others' needs has meant that I've had a much easier time understanding, accommodating, and advocating for the needs of others than I had in the past. Holding the double standard that “its okay for other people to have disabilities that need accommodating, but not okay for me to have the same” actually made me less effective in honoring the needs of others.

Meanwhile, as I was learning to see myself as valuable and my needs as valid, I was also learning exactly what it really meant that I was Autistic. Among the misconceptions around Disabled people and Autistic people in particular was and still is the notion that our condition is one especially having to do with “behavioral problems” rather than one having to do with sensory issues, executive function differences (and sometimes deficits), brain-body connection issues, and other cognitive and learning needs that differ from, but are no less valid than, those of allistic people (non-Autistic people).

Furthermore, I had to learn that my empathy wasn't just a figment of my imagination. For almost two decades, I'd been told that “Autistics lack empathy” and that what I thought of as being empathic must have been a learned behavior, rather than genuine empathy. But this notion is, again, factually incorrect: most Autistics have an abundance of empathy, it's just that we don't always know how to demonstrate it to an allistic in a way that the allistic would understand, or else we might know how to show it, but our bodies aren't able to convey this in the socially expected way. So here I'd been wishing I didn't have a condition that I'd never actually had: a condition having to do with lack of empathy and the vague notion of “behavioral problems”.

(Note: there are some conditions that involve having a lowered empathic response to the demonstrated feelings of others, and people with such conditions are human, too. It's not wrong to lack the same level of empathy as the general population. It just might make learning to interact harmoniously with others more difficult than it is for people who have a higher empathic response. But it by no means is something to be ashamed of. By discussing the misconceptions around Autistics and empathy I'm only trying to illustrate that the “experts” frequently have little idea what they are talking about when it comes specifically to the characteristics of autism.)

After joining ASAN, it was a very short road to accepting my own autism and shifting from seeing myself as a “person with autism” to identifying as an Autistic, since this was clearly at least as much a part of my identity as being Ace or being an agender genderqueer enby. In fact, when I'd first learned of this most fundamental truth about myself — that I'm Autistic — I had already been living with a raft of other labels and conditions, some neurological in nature, among these dyslexia, ADHD, executive function disability, etc., and others unrelated: legally blind (due to albinism), chronic fatigue syndrome and fibromyalgia (due, as I've learned in the past few years, to dysautonomia caused by Ehlers-Danlos syndrome). And I found myself becoming far more clear about what, among all my body's traits constituted being Autistic and what did not. Certainly my sensory issues and part of my executive function issues were aspects of my autism, as were some of my other brain-body-connection issues, and of course my brain's way of processing information.

And as I said above, being Autistic did not automatically mean lacking empathy, nor having “behavioral problems”, but brain wiring that leads to processing sensory data far differently from that of allistic people and especially from neurotypical people (those allistics who are not otherwise neurodivergent). And the more I learned, the more I realized this applied to the way society misperceives other types of disability. Societal ableism exists not only among the general population, but especially among the vast majority of “disability experts”, professionals who treat, care for, educate, monitor, imprison, or otherwise work “with”* Disabled people of any age. My use of quotes around the word “with” in the previous sentence is to indicate that rarely if ever is the Disabled person consulted, nor their consent honored by such professionals when making decisions, whether major life decisions (like what surgeries to have or where to live) or day-to-day (like what to eat or when to go out, etc.).

While my brain was absorbing all this new information, and as I joined in ASAN activities, I learned ever more about the evils committed by Autism Speaks. As said above, they are an organization dedicated to the eradication of autism, whether by “behavioral intervention” (compliance-based ABA therapy meant to train Autistic children to pretend to be allistic and rob them of the ability to say “no” and defend their boundaries), or by preventing Autistic people from being born, through the means of selective abortion of fetuses — or the non-implantation of embryos — deemed to have enough of the autism-related genetic markers.

This is scientific delusion.

The whole idea behind ABA — training Autistic kids to pretend to be allistic — was come up with by none other than Ole Ivar Lovaas, father of the anti-gay “conversion therapy” movement, which has been shown over and over not to work. Yet while the majority of the scientific community has acknowledged that “you can't train away the gay”, it has been far slower to condemn ABA, despite its miserable track record to date. (For more on the ills of ABA “therapy”, I suggest reading this and this.)

(Yes, now that Autism Speaks has succeeded in getting insurance companies to pay for anything called “ABA”, there have sprung up several “variants” on ABA, again using quotes because these programs are largely not ABA in any recognizable form. Many such faux-ABA programs are actually *good* educational programs that really do provide an education tailored to the needs of some Autistic children, but these are more the exception than the rule.)

And as regards eliminating Autism, it wouldn't be wise to even try to do this: autism is probably a multigenic and possibly also epigenetic condition, and most of those genes are ones necessary to human neurodiversity. Eliminating them from the general population would be a *really bad idea*. Without autistic traits, the human race might still be living in undecorated caves, subject to early death, starvation, diseases, and other miseries of the stone age. Again, evidence of profound delusion on the part of Autism Speaks as an organization and evident in the rhetoric of its founders and directors, allistic one and all.

Furthermore, A$ promotes hate by making harmful claims about Autistics, similar to the hate speech used by other hate groups such as neo-Nazi groups, the KKK and CofCC, etc.. Such claims have contributed to an ableist atmosphere that condones the murder of disabled people by family members. Such murderers are frequently shown sympathy in the press and the legal system that they would not have received if their victims had been abled.

At the same time A$ claims to offer loads of “help” for families with Autistic children and adult Autistics, while the reality is that they have only allocated 3-to-4% of their budget to giving any actual assistance to such families and individuals. As 501c3 organizations go, they do not make honorable use of the vast amounts of money they syphon off of the general autism community. Instead, they spend most of it on marketing, huge salaries, and research that is clearly meant to lead to a way to prevent Autistic babies from being born. Thus far, their findings do not pass the rigors of science based medicine, whether regarding the supposed recent changes in the prevalence of autism, or regarding genetic markers. And their earlier (now disavowed) support of the anti-vax movement has resulted in the resurgence of numerous preventable childhood diseases and the deaths of infants too young to be vaccinated.

Those are the social, economic, and science-based reasons why I boycott Autism Speaks and why, where possible, I boycott those organizations who support them. But there are also spiritual reasons for refusing to support an organization like A$. Since I joined the Blue Heron Zen community a few months ago, I've been reacquainting myself with Buddhist philosophy, and I can immediately see two obvious Zen reasons not to support A$. These reasons have to do with the first two of the Four Great Vows we say at the beginning of each group meditation.

For the sake of discussion, I'll start with the second of these, which is “Delusions are endless. We vow to cut through them all”. (In this case, “delusions” refer not only to those that characterize a state of psychosis, but also to the every-day sort that cognitive therapists call thought distortions: those leaps of illogic that lead to poor decision-making and frequently to the mistreatment of others, not to mention the perpetuation of ones own suffering.) I feel it is delusional thinking to hold that A$ is doing any good for society. On the contrary, they have encouraged exactly the sort of thinking that led to my own internalized ablism which took me so many years to finally begin to overcome, and they drain money from individuals and organizations, money that might better go toward finding humane, inclusive, and effective methods of education for neurodivergent people and better ways to accommodate the needs of Autistic adults so we can find and hold onto good jobs, live in the community rather than in institutions, etc.

Instead, A$ seems to hold out a hand that offers support for society's irrational fear around autism — fear that has led to such poor vaccination rates that childhood illnesses of my parents' generation have made enough of a resurgence that people are dying from them again; and fear that has led to the systematic abuse of Autistic children in the form of compliance-based ABA, not to mention led to the murder of many Autistics by family caregivers.

Rather than dissuade people from such fears, A$ and its founders and leadership have actively encouraged such delusions in the hopes of gaining more revenue each year. This cannot lead to any good, and to support any such organization would seem to me to break the first of the four great vows — “Sentient beings are numberless. We vow to save them all.” — that of bringing enlightenment to all beings. By actively encouraging and enabling people to stew in illegitimate fears, A$ is doing the very opposite. Thus, although I am only a mere student of Zen, I cannot in good conscience recommend Autism Speaks as a worthy recipient of financial nor volunteer support by any Buddhist who sincerely adheres to the Four Great Vows:

Sentient beings are numberless. We vow to save them all.
Delusions are endless. We vow to cut through them all.
The teachings are infinite. We vow to learn them all.
The Buddha Way is inconceivable. We vow to attain it.


I'm nearly certain there are excellent arguments to be made that support for A$ also violates the third and fourth of these vows, but this blog post is already much longer than I would have liked it to be, and anyway, I'm just a beginning student, so I doubt I'd be the person to address these. (Yeah, 2.7 decades of on-and-off Zen practice does not disqualify someone from being a beginner. 😉) Suffice it to say that supporting A$ is an all around bad idea.
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vladdraculea: Rainbow Autistic Pride lemniscate over the black, grey, white, and purple stripes of the Asexuality Pride flag (Default)
Vlad Drăculea

June 2017

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