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ASPartOfMe
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27 Aug 2022, 8:38 pm

Hidden Figures In Neurodiversity: Judy Singer? - Forbes

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What do Rosalind Franklin, Katherine Johnson, Ada Lovelace and Grunya Sukhareva have in common? They are all accomplished, brilliant women scientists whose contributions were minimised in history compared to the men involved in the same projects. In the twenty-first century, there are now active campaigns to return them to the narrative and centre their discoveries. Grunya Sukhareva discovered and wrote about Autism 20 years before Kanner. However, in the neurodiversity world, this story is currently being enacted live, in the moment. We’ve not changed the behavior that led to biased history.

You might be thinking that Judy Singer is not a "Hidden Figure." Many know her name. But we’re still, as a field, not referencing Judy Singer’s work on the conceptualization of neurodiversity. So even though we see her work in popular press and her name in articles, she has no way to build an income or legacy from her work. This is sexism, and ableism, in action.

Judy Singer completed her seminal thesis in 1998, the first academic sociological inquiry into the growing Autistic Self-Advocacy Movement. Her work was based on participant observation of online autistic self-advocacy groups and was subtitled “a personal exploration of a new social movement based on neurological diversity”. This work was substantially republished as a book chapter.

“Why can’t you be normal for once in your life?” From a problem with no name to the emergence of a new category of difference.” In Corker M, French S (eds.). Disability Discourse. Buckingham, UK: Open University Press, 1999,59–67.

She later went on to publish her book: “Neurodiversity: The Birth of an Idea” © 2016 and 2017 Judy Singer. In academia it is customary and courteous to reference the source material of another's ideas. These works should have the highest academic citation rate in the neurodiversity literature. But they do not.

Singer initially proposed “Neurodiversity” as banner term to name to the movement that was emerging not just from the Autistic sphere, but also attracting other neurominority groups, e.g. those labelled with ADHD and the “Dys”es. All of these groups were developing the self-confidence to challenge the prevailing Bible of Psychiatry, the DSM’s bleak litany of deficiencies unbalanced by their strength, and clearly needed an umbrella term for their common cause. The Neurodiversity Movement has become a powerful minority-rights campaign, inspiring the world’s largest companies to radically shift their hiring and talent management practices. A thriving cottage industry has developed to advise employers through consultancy and professional services.

The neurodiversity paradigm is redesigning scientific enquiry: instead of just scanning the brains of neurodivergent kids to find the bits that are broken, we are questioning homogeneity of thought.

Some have argued that Judy’s work is simply a naming of the ideas already swimming around chat rooms and direct messaging. Others report that she simply “coined a phrase.” However, such interpretations undermine the diligent work she completed in writing her thesis and then the enormous effort required to get the work peer reviewed and published. Her scholarly contribution gave form to the concepts, a phenomenological enquiry rather than a series of random thoughts or words. Singer deployed solid social science principles of self-reflexivity and rigor. These are not easy undertakings under any circumstance, but for a woman on the Autistic spectrum herself, who was singlehandedly raising an Autistic daughter with no family support, an absent father and no inherited wealth, it is immense. Singer is an example of the critique she was articulating, discriminated against in education and society for her idiosyncrasies (and her sex), yet able to deliver a lightening bolt of reason and logic, which is now reverberating across the world.

When advocacy ideas are not captured, they risk dissipating. By expanding the conversation and writing a thesis, chapters and book, Singer was creating a reference point for the historically voiceless minority of Autistic technologists, creatives, entrepreneurs, community leaders, a foundation upon which the advocacy could stand. In order to shift the paradigm of life sciences that have sought to categorize, pathologize and marginalize minorities, one has to speak to them in a language they understand. Judy’s ideas crystallized what many were feeling into logical, robust principles.

Singer explained the reason for her studious research and documentation: “Sociologists are not allowed to talk about love or suffering, and I followed the rules to write my thesis, but this work was based on my family’s suffering, exclusion, poverty, frustration, with a “problem that had no name”. I stumbled on disability studies when I was studying sociology, and I cried all night at the first book I read, when I realised we had a disability in the family, even though I didn’t know what it was. At that time I hadn’t even heard of Asperger’s Syndrome or an Autistic Spectrum. When I finally had my Aha! Moment, I was beside myself with excitement, and using all the resources of my university did a massive literature search to find the experts, and found absolutely nothing! Which is when it struck me. “OMG! The expert might have to be me!”. So I signed up for Honours to write a thesis. I was limited to just 15,000 words, so it concentrated my mind wonderfully. I was absolutely confident that this new movement was destined to be last great “liberation” movement of the 20th century in the mold of the women’s and gay movements. So I gave it my all! I wanted the world to understand. Not that I had any expectation that anyone was even going to read my work. Australia’s post-colonized “Cultural Cringe” means we don’t recognize our own, unless they are recognized in the Northern Hemisphere first. Meanwhile, the North extracts value from the South in whatever form it can.

So Australia’s existing Disability Movement didn’t realise that I had a new paradigm, and were pretty dismissive, but at least I had put down something I could be proud of. As expected, I was considered “eccentric”, my work was ignored, and I moved on to my other burning issues, including Australia’s shocking abuse of unemployed people, older women, homeless people, and tenants. While I am flattered by the attention I have latterly received for this word, I would like to be recognized for my true achievement, a roadmap for the movement that is actually redefining how we see ourselves as humans.”

Singer’s efforts then, have directly led to the changes we now see in acceptance for Autistic people in particular, but also the ADHD, Dyslexic, Dyspraxic, Touretters neurotypes that have joined the conversation. Yet – and here’s the cruncher – Singer herself has not been afforded the solid foundation on which her works stands. Though she earns money as a speaker, this is not her favorite medium. Singer is, at heart, an academic and social scientist. She should have academic capital upon which to deliver visiting lectureships and thought leadership.

Yet, Singer’s academic capital has been minimized by what can only be described as a bizarre omission in the literature. Her work is rarely referenced by others. In academia, one’s citations are one’s success stories. They are how you gain entry to University positions, to book publishing deals, to research funding. If you have no citations, it doesn’t matter how good your ideas and articulation might be, you have no currency. Her name is often mentioned in the text of academic articles, but then others are referenced for describing her ideas. A quick internet search of the phrase “Judy Singer Neurodiversity” will take you to articles written later, by men, not all of whom have signposted her work. So the famous northern anglosphere of the Neurodiversity world are (inadvertently I believe) developing their own career capital whilst Singer languishes in folklore.

If you are an academic referencing Judy Singer, reference her actual work and not just her name in the text. If you are an advocate or writing for a professional audience, add links to her book. Correctly attribute the conceptualization (not coining) of Neurodiversity to the chapter she published following her thesis. Acknowledge the value of a scholarly, well-evidenced comprehensive work. Acknowledge that Singer has continued to champion the causes and needs of her community, in every forum to which she is invited and, like many single parent women with disabled children, she has been left impoverished in her old age. Her work is sophisticated and rich, it needs to be read and shared widely. She is deserving of our accolades and our accurate recording of her contribution. Having lost a lifetime opportunity in career and wealth as a direct result of ableism, sexism and classism, the very least we owe her is her legacy.


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carlos55
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30 Aug 2022, 5:21 am

Neurodiversity paradigm is outside of science so why would science recognize her any more than they recognize The Bible or Adam and Eve?

The article contradicts itself in implying the acknowledgement that autism is a disability.

Well disability is science based.

There is a biological reason why an autistic person can’t do the things NT people can.

The ND paradigm states autism is a natural difference like being left handed.

Even most ND advocates acknowledge ND is an alternative way of looking at autism to pathology and avoid all references to medical terms.


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Mona Pereth
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02 Sep 2022, 9:15 pm

carlos55 wrote:
Neurodiversity paradigm is outside of science so why would science recognize her any more than they recognize The Bible or Adam and Eve?

She is a sociologist. It is valid for sociologists to study how society treats disabled people, and to study political movements to change this.

carlos55 wrote:
The article contradicts itself in implying the acknowledgement that autism is a disability.

Not a contradiction at all. The neurodiversity paradigm is basically just the social model of disability, applied to developmental disabilities and neurological conditions. The social model of disability is the standard paradigm of the disability rights movement as a whole.


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carlos55
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05 Sep 2022, 8:28 am

Mona Pereth wrote:
carlos55 wrote:
Neurodiversity paradigm is outside of science so why would science recognize her any more than they recognize The Bible or Adam and Eve?

She is a sociologist. It is valid for sociologists to study how society treats disabled people, and to study political movements to change this.

carlos55 wrote:
The article contradicts itself in implying the acknowledgement that autism is a disability.

Not a contradiction at all. The neurodiversity paradigm is basically just the social model of disability, applied to developmental disabilities and neurological conditions. The social model of disability is the standard paradigm of the disability rights movement as a whole.


Its debatable as to if sociology is a real science, a quick google search says :-


Quote:
Sociology is not a science because it can't make experimentation. Sociology deals with human relationships which cannot be put to laboratory test. We can't see or weigh human relationship because it is abstract in nature. We can't do experiment with abstract things.



Others will have a different opinion of course but it cant be put in the same category as the pure sciences like physics, biology & chemistry.

By naming Rosalind Franklin, Katherine Johnson, Ada Lovelace and Grunya Sukhareva the article implies Judy belongs among scientists for stating the simple obvious theory that disabled people would be less disabled if they didn`t have to use the ability that`s impaired to get what they want rather to expect everyone else to give it for them implying time money and human resources are limitless

Hardly Nobel Prize winning stuff really, more like middle school essay.

I would be much less disabled if i was the son of a billionaire & i could press a button and have a team of servants go out & fulfill my every need.

Sadly real life is not like that.

The social model of disability is simply an endless aspiration like the end of all racism, nuclear weapons & peace on earth.

The eternal carrot tied to the donkey.

Keeps a minority of elite disabled busy and wealthy, in the meantime while the rest of us have to deal with harsh reality.


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Diverse4Me
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07 Sep 2022, 11:01 am

Mona Pereth wrote:

She is a sociologist. It is valid for sociologists to study how society treats disabled people, and to study political movements to change this.[/quote]
carlos55 wrote:

Its debatable as to if sociology is a real science, a quick google search says :-


NOT a quick google search of "sociology science". It will not turn up anything like you said.

Did you search "sociology not a real science"?

That is not a real, honest, nor SCIENTIFIC test.

In science you test a hypothesis, and if you go in making assumptions you make an ass of yourself & any peers who don't review your study properly. You weren't perchance involved in the CBT/GET debacle were you?

An easy to read fictional primer is HPMOR. Not perfect, but will help.

carlos55 wrote:

Others will have a different opinion of course but it cant be put in the same category as the pure sciences like physics, biology & chemistry.


Image


One line that barely brushes on your distorted viewpoint is literally from Cliff notes

Quote:
"The definition of sociology uses the phrase “scientific study.” Many people do not consider the social or soft sciences—such as sociology and psychology—to be “true” or hard sciences—such as chemistry and physics. Whereas inherent differences exist between the soft and hard sciences, the same fundamental principles of scientific inquiry apply. The word science comes from the Latin scire meaning “to know,” ...."


It puts it on the same level as Psychology, you know the experimental basis and theory behind Psychiatry, which takes us back to the DSM. Nice circle.

carlos55 wrote:

Hardly Nobel Prize winning stuff really, more like middle school essay.


Speaking of, I wouldn't have handed in that execrable excuse for a quote in primary school, let alone middle school! (see image for the start of grammar correction, let alone logical flaws!) Me Write Pretty One Day?

carlos55 wrote:
article implies Judy belongs among scientists for stating the simple obvious theory


She did more than that, but even so, Galileo and Newton were at first ridiculed etc.

carlos55 wrote:
The social model of disability is simply an endless aspiration like the end of all racism, nuclear weapons & peace on earth.


Sorry for wanting to improve the world.

{Gibbs Slap}

Please don't spew your internalised ableism on other people's aspirations with pseudo-scientific trash.

It makes me kind of testy. Also it is 2 am, makes me grumpier.


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carlos55
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08 Sep 2022, 5:02 am

Quote:
Diverse4Me wrote:
Mona Pereth wrote:

She is a sociologist. It is valid for sociologists to study how society treats disabled people, and to study political movements to change this.

carlos55 wrote:

Its debatable as to if sociology is a real science, a quick google search says :-


NOT a quick google search of "sociology science". It will not turn up anything like you said.

Did you search "sociology not a real science"?

That is not a real, honest, nor SCIENTIFIC test.

In science you test a hypothesis, and if you go in making assumptions you make an ass of yourself & any peers who don't review your study properly. You weren't perchance involved in the CBT/GET debacle were you?

An easy to read fictional primer is HPMOR. Not perfect, but will help.

carlos55 wrote:

Others will have a different opinion of course but it cant be put in the same category as the pure sciences like physics, biology & chemistry.


Image resized to 96% of its original size [519 x 190]
Image

One line that barely brushes on your distorted viewpoint is literally from Cliff notes

Quote:
"The definition of sociology uses the phrase “scientific study.” Many people do not consider the social or soft sciences—such as sociology and psychology—to be “true” or hard sciences—such as chemistry and physics. Whereas inherent differences exist between the soft and hard sciences, the same fundamental principles of scientific inquiry apply. The word science comes from the Latin scire meaning “to know,” ...."


It puts it on the same level as Psychology, you know the experimental basis and theory behind Psychiatry, which takes us back to the DSM. Nice circle.

carlos55 wrote:

Hardly Nobel Prize winning stuff really, more like middle school essay.


Speaking of, I wouldn't have handed in that execrable excuse for a quote in primary school, let alone middle school! (see image for the start of grammar correction, let alone logical flaws!) Me Write Pretty One Day?

carlos55 wrote:
article implies Judy belongs among scientists for stating the simple obvious theory


She did more than that, but even so, Galileo and Newton were at first ridiculed etc.

carlos55 wrote:
The social model of disability is simply an endless aspiration like the end of all racism, nuclear weapons & peace on earth.


Sorry for wanting to improve the world.

{Gibbs Slap}

Please don't spew your internalised ableism on other people's aspirations with pseudo-scientific trash.

It makes me kind of testy. Also it is 2 am, makes me grumpier.
[/quote]

Here`s another opinion on social sciences:

SOCIAL SCIENTISTS ARE NOT 'REAL' SCIENTISTS - The Washington Post

https://www.washingtonpost.com/archive/ ... 2048b8daa/

Basically, in real science rules are fixed forever or updated to make them more accurate e=mc2 always and will be in 10,000 years.

Social sciences like political science are not because people are not always predictable, someone who you would have thought would vote Biden may have voted for Trump because they liked his haircut or maybe they stayed in bed on election day and didn’t vote at all.

They also require less academic skill. To become a surgeon and nuclear physicist requires far higher IQ and skill than to become a sociologist

----

It appears the original concept of “The social model of disability” came from Mike Oliver (wheelchair user) not Judy, who just adapted it to ND.

Social model of disability - Wikipedia

https://en.wikipedia.org/wiki/Social_mo ... disability

More importantly unlike many in ND movement, Mike never intended it to replace scientific explanation for disability or the need for disabled people to be medically treated or cured where possible:-

Quote:
Quote:
Oliver did not intend the social model of disability to be an all-encompassing theory of disability, but rather a starting point in reframing how society views disability.[6] This model was conceived of as a tool that could be used to improve the lives of disabled people, rather than a complete explanation for every experience and circumstance.[6]

It has been criticized for underplaying the role of disabilities.[6]


I`m not against the social model in principal as a tool to help disabled people in society just against the way it’s been hijacked by many in the ND movement as a means of replacing pathology altogether.

The social model as a total solution would be flawed by realities of everyday life.


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