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carlos55
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25 May 2022, 3:31 pm

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The Gentrification of Disability

Freddie deBoer
May 23
504
When I was in my late 20s (early 2007 to mid 2009, maybe) I worked for the local public school district in my hometown. For the bulk of my time there I was in a special program for kids with severe emotional disturbance, which I’ve written about once or twice. But I worked in a number of capacities in those years, and for a little while I helped out in a conventional special ed classroom for the middle school. I guess you’d say I was a paraprofessional, just extra coverage when they needed it.

In that class there were two boys who had autism which resulted in severe academic and social and communicative impairments. One of them was completely nonverbal and had been his entire life. As I understood it, he had never been capable of speaking or reading, could not dress himself, wore sanitary garments, could not go to the bathroom without assistance. He would occasionally screech very loudly, without clear cause. I believe these days he would be referred to as having Level Three autism, as defined by the DSM. He needed a lot of help, and though he was unable to complete what might conventionally be called academic work the school provided him with structure, support, and time during which his mother didn’t have to care for him. I met her on several occasions when she came to pick him up after school. She would sometimes talk about the difficulties of raising a disabled child in language that would be frowned on today, but I admired how frank and honest she was.

She was really not a fan of the autism awareness community of the time. This was well before the “neurodiversity” movement and all of its habits. It was all about awareness, raising awareness, 5ks for awareness, bumper stickers for awareness. That was precisely what angered her the most. She said to me once, “What does awareness do for my kid? How does it help me?” Words to that effect. It was a good question, one I couldn’t answer. Today I don’t hear about awareness so much, but there’s still plenty of the basic disease of awareness thinking - the notion that what people who deal with a particular disability need is a vague positivity, that what every disabled person requires is the laurel of strangers condescendingly wishing them the best. Now, with the rise of neurodiversity and the notion that autism is only different, not worse, we are confronted with similar questions. When a mother struggles every day to care for someone who will likely never be able to care for himself, what value could it hold for her that his condition is called diversity, rather than disorder? What value can it have for him, who cannot speak to comment on the difference?

I thought of that mother when I read about the recent cancelation of an academic panel at Harvard. It seems a panel of experts was slated to speak on the subject of how best to help those with autism. But as they planned to speak about treatment, about treating autism as a hindrance to be managed, the event was decried as “violently ableist” by Harvard activists and swiftly shut down. It’s worth looking at the petition that was organized as part of this effort. One part reads

Autism is a neurodevelopmental and neurobiological disability that is not treatable or curable. It is not an illness or disease and most importantly, it is not inherently negative. Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves from such hateful, eugenicist logic.

This is, I think, nonsensical. It asserts that autism is a disability, a dis-ability, but also that it’s not an illness, a disease, or inherently negative. But the very concept of disability depends on the notion that disabilities are inherently negative. If they are not in some sense disabling, the term has no meaning. What’s more, the entire moral and legal logic that underpins the concept of reasonable accommodation - the affordances we make for people with disabilities, mandated by the Americans with Disabilities Act - depends on the idea that these things are both unchosen and harmful. If they’re not, then there’s no communal obligation to accommodate them. What would they even need accommodation for?

More, though, I cannot comprehend the arrogance of the woman who led the charge against the panel at Harvard, Kris King, to sit on her perch at the most exclusive university in the world and declare for the entire autistic community what autism is and means. It’s unsurprising that she’s disdainful of the need for treatment, given that she’s so high-functioning that she’s flourishing at an Ivy League university. She will never live the life that mother I knew lived. She will likely never care for someone whose autism has devastated them, robbed them of their ability to have conventional human relationships, to have a career, to be in love. Such debilitated people and their families will never have the cultural influence of a self-promoting Harvard student and so they’re simply read out of the conversation. Meanwhile autism activists and advocates make sweeping pronouncements about the lives of people they don’t know and could never understand.

“Autistic people at Harvard and globally have advocated in the face of ableism to defend ourselves,” she writes. In fact, Ms. King, globally there are millions of people whose autism ensures they can’t advocate at all. Spare a thought for them, while you’re busy framing your diploma.

In the years that followed my brief employment at the school district, the ideology that led to people like King was born. In the early 2010s there was a flurry of interest in autism. Dozens of books and hundreds of essays were written about autism, almost all of which talked about it as a set of valuable personality quirks rather than as a disorder. In article after ponderous article, autism was described as a newer, perhaps better way of thinking, sometimes even a “new evolution” for the human species. Always, always, always, this navel-gazing fixated relentlessly on the highest-functioning people with autism. You could read tens of thousands of words in this genre without ever once being informed about the existence of those whose autism debilitates them. Whenever I read yet another article talking about how some high-achieving computer scientist saw their autism as the key to their success, I would think of those whose autism has prevented them from enjoying all manner of elements of human life. Where were those people in all of that hype? Will Tyler Cowen ever write a book about them? Are they ever going to appear on the cover of Forbes magazine or whatever the f**k? No. They have been replaced; in their stead, we have members of the striving classes whose autism has never prevented them from flourishing at everything they’ve ever tried. And since “autism is not a disorder” has become the enforced opinion, those whose autism plainly is a disorder have to be marginalized - by the very people who complain about the marginalization of the “neurodiverse.” Autism has been gentrified.

This is a dynamic I now cannot stop seeing: once a human attribute like autism or mental illness becomes seen as an identity marker that is useful for social positioning among the chattering class, the conversation about that attribute inevitably becomes fixated on those among that chattering class. It becomes impossible to escape their immense social gravity. The culture of that attribute becomes distorted and bent towards the interests and biases of those who enjoy the privilege of holding society’s microphone. Because you must be able to effectively communicate to take part in the conversation, and because all of the usual privileges of class and circumstance influence whose voice sounds the loudest, the discussion becomes just another playground for college-educated urbanites. To speak you must be able to speak, literally, and you must also enjoy the privileges of communicative competence and educated-class signaling mechanisms. So we will always tend toward a conversation that defaults to the interests of the least afflicted. This is inevitable; it’s baked into the system.

We could overcome this problem if the people in the arena were dedicated to fronting (excuse me, “centering”) the interests of the most afflicted. But we can’t have that. We can’t have that because contemporary disability ideology is obsessively fixated on telling people to center themselves. That is perceived to be the entirety of the work: every individual with a disability must demand that the world sees them as “valid,” that they are just as authentically disabled as anyone else, that their ADHD grants them perfectly equal priority in receiving accommodation as someone who’s paralyzed from the neck down. The whole social culture of disability activism and studies is leveraged to support the individual’s demand for attention and proper respect; it cannot countenance the notion that there are those who we should put before ourselves. And the obvious impulse to say that someone who faces total debilitation from their disorder should, in fact, be a higher priority for the medical and therapeutic communities is treated as the height of bigotry.

I am watching, in real time, as the same process of gentrification that overtook autism overtakes mental illness.


https://freddiedeboer.substack.com/p/th ... bility?s=r


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kitesandtrainsandcats
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25 May 2022, 4:59 pm

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There will be many who disagree with my overall point,

And I'm not one of them.

Good points well written.


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25 May 2022, 7:39 pm

Sarcasm:
ASAN must have mistaken the people at the Judge Rotenberg Center and in sheltered workshops as just "differently-abled". If these clueless ableist elitists knew where on the spectrum these people are they would not be advocating for them, would they?
End Sarcasm
Some people will never advance or advance to a level where they do not need care 24/7. If the assumption by caregivers is hopeless advancement probably will not happen. If there is a level of positivity the chances for advancement increases.


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carlos55
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26 May 2022, 2:29 am

I believe what the author was getting at was nothing much has changed in the last 100 years.

Those with severe brain conditions like level 3 autism are to be hidden away behind closed doors and not spoken about.


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carlos55
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26 May 2022, 7:33 am

Interesting video by the same author basically criticizing the ND movement within schizophrenia.

Different condition but same issues remain

https://m.youtube.com/watch?time_contin ... e=emb_logo


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26 May 2022, 10:03 am

carlos55 wrote:
Interesting video by the same author basically criticizing the ND movement within schizophrenia.

Different condition but same issues remain

https://m.youtube.com/watch?time_contin ... e=emb_logo


The problem with the UK & SMI is a system geared to giving more help and support to those who are functioning well most of the time but can occasionally be a danger to themselves or others, Vs those who are not a danger but are functioning significantly less well than the 1st group at least 4/5 of the time.


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Your neurodiverse (Aspie) score: 133 of 200
Your neurotypical (non-autistic) score: 47 of 200
You are very likely neurodiverse (Aspie)


carlos55
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26 May 2022, 12:55 pm

I had heard of the voices group before he mentioned it. No doubt it’s probably growing in momentum if featured in The NY times.

Probably trying to mirror the autism ND movement.

Very dangerous idea since if they try to present schizophrenia as a mere difference then why take meds for a difference?

I’m sure they probably discourage it in the same way searching for a cure for autism is discouraged by many in the autism ND movement.

Problem is with schizophrenia taking meds can mean life or death if that person is a danger to himself or others.


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26 May 2022, 2:29 pm

thank you for this post. Good thought filled insights which many of those(" good or better form of normal neurology" folks demanding supports while denying their disabilities and completely locking out and ignoring the needs of their less gifted and struggling brothers and sisters) might need to read.


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26 May 2022, 3:45 pm

autisticelders wrote:
thank you for this post. Good thought filled insights which many of those(" good or better form of normal neurology" folks demanding supports while denying their disabilities and completely locking out and ignoring the needs of their less gifted and struggling brothers and sisters) might need to read.


Some of us fit both groups. 2e.


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27 May 2022, 8:42 am

Twitter is rather choc a bloc with the self appointed 'autistic elite' who see themselves as the gatekeepers of everything to do with autism.


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27 May 2022, 8:54 am

firemonkey wrote:
Twitter is rather choc a bloc with the self appointed 'autistic elite' who see themselves as the gatekeepers of everything to do with autism.


Are they just people of high social sway or high achievers employment wise?



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27 May 2022, 9:28 am

Nades wrote:
firemonkey wrote:
Twitter is rather choc a bloc with the self appointed 'autistic elite' who see themselves as the gatekeepers of everything to do with autism.


Are they just people of high social sway or high achievers employment wise?


There's a lot of 'I got a degree/PhD/got a fantastic job/book published etc while having the worst sensory or other symptoms you could possibly imagine' types on there.


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29 May 2022, 5:23 am

Some of us fit both groups. 2e.[/quote]
Me too


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05 Jun 2022, 9:50 pm

carlos55 wrote:
I had heard of the voices group before he mentioned it. No doubt it’s probably growing in momentum if featured in The NY times.

Probably trying to mirror the autism ND movement.

The anti-psychiatry movement -- as well as other, less extreme movements critical of psychiatry -- are actually much OLDER than the autism ND movement. (See the Wikipedia articles on Anti-psychiatry and the Psychiatric survivors movement. See also The Movement Against Psychiatry by Shayla Love, Vice, August 26, 2020.)

Pressures from the anti-psychiatry and psychiatric survivors' movements have resulted in a number of badly-needed reforms to psychiatry over the years.

It seems to me that there have been enough reforms that full-fledged anti-psychiatry no longer makes sense, although it's still important to advocate for the rights of mental patients.

I do believe that there is such a thing as mental illness and that treatments for same are desirable, as long as the treatments don't have too-bad side-effects. Fortunately, there are now many more and better psychiatric medications that there were back in the 1960's and 1970's, when the anti-psychiatry movement was a much bigger thing than it is today.

EDIT: The most recent incarnation of the psychiatric survivors' movement, Mad Pride, was founded in 1993, around the same time that the autistic rights movement was founded. (See Wikipedia article on Mad Pride.) The term "neurodiversity" was not coined until around 1998.


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Last edited by Mona Pereth on 06 Jun 2022, 1:40 am, edited 1 time in total.

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06 Jun 2022, 12:42 am

firemonkey wrote:
Nades wrote:
firemonkey wrote:
Twitter is rather choc a bloc with the self appointed 'autistic elite' who see themselves as the gatekeepers of everything to do with autism.


Are they just people of high social sway or high achievers employment wise?


There's a lot of 'I got a degree/PhD/got a fantastic job/book published etc while having the worst sensory or other symptoms you could possibly imagine' types on there.

Those types drive me crazy. I have really bad executive dysfunction that I don’t think those types are dealing with.



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06 Jun 2022, 3:04 am

firemonkey wrote:
Twitter is rather choc a bloc with the self appointed 'autistic elite' who see themselves as the gatekeepers of everything to do with autism.

This sort of thing is intrinsic to the nature of today's social media, including Twitter. Due to popularity algorithms, everything on any given topic naturally clusters around a handful of celebrities and their fans/followers.

Among autistic people, the natural celebrities are precisely the "'I got a degree/PhD/got a fantastic job/book published etc while having the worst sensory or other symptoms you could possibly imagine' types" you mentioned in a subsequent post, as well as the authors/editors of popular blogs and popular YouTube (or TikTok) channels.

And these minor celebrities naturally get to be gatekeepers, due to their ability to block anyone they don't like from responding to their posts. And they are not under even the slightest obligation to be "fair," by any standard whatsoever, about whom they choose to block. Indeed the prevailing ethos favors being quick to block anyone whom one dislikes or disagrees with even slightly, for any reason. Hence the infamous social media bubbles.

This is very much in contrast to old-fashioned message boards like Wrong Planet, where there are no popularity algorithms (beyond the mere fact that an attention-grabbing thread stays on the front page longer), and where there is at least a minimal sense of there being a community of users to whom the moderators have obligations, and where there are specific rules that the moderators at least try to enforce fairly.

At least -- in my opinion -- most of the autistic minor celebrities on Twitter actually have worthwhile things to say. I don't fault any of them personally for what I see as the problems of today's autistic social media scene.

But today's social media algorithms are a further ratcheting-up of the ultra-individualism of modern Western culture, an ultra-individualism that paradoxically also leads to extreme groupthink without a corresponding sense of group responsibility.


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