Tuesday 7 November 2023

My Response to Martijn Dekker's Libels

You may have come across the blog piece below authored by Martijn "McDutchie" Dekker who seems to be dedicated to delegitimizing my work and undermining my reputation.

Click to read Dekker's piece
The piece is a pack of falsehoods. My inner Pollyanna has chosen not to use the word "lies" outright about this piece. I would prefer not to think that Dekker is lying out of pure malice, but that he genuinely believes what he has written. 

To use Dekker's own favoured phrase - "it turns out" that his "correction" is actually a memoir, which as my rebuttal will show, "turns out" to be a classic of its genre "The Unreliable Memoir". There is a well-known trick of memory called "confirmation bias"- when driven by strong emotions, a person believes what they want to believe. But in terms of the damage a false confirmation-biased memory can cause, it is as good as, or should I say, as bad as, a lie. And even more so, when embroidered with wishful thinking. 

I hope you will not simply "like" Dekker's memoir before reading my corrections. And I hope truth-seekers will not be deterred by the length of my response. I'm sorry, but it 
takes time to replace simplistic fabrications and unreliable memories with complex evidence-based facts. I am doing this for the historical record.

Anyone with background in the humanities will readily see that Mr. Dekker's opinion piece demonstrates a lack of understanding of academic process in the social sciences, or the rigorous ethics standards that academic papers must pass.

NB: while Mr. Dekker's ignorance can be excused on this matter, academics and professionals who choose to endorse, reproduce, or cite Dekker's defamatory content without exercising due diligence, may find themselves accountable to their respective organizations and institutions. 

It has been disappointing to find that a number of professionals have already endorsed and disseminated his calumnies.

Contents

  1. Summary
  2. My response to Dekker’s “Corrections”
  3. Appendices
    1. Appendix 1: The Provenance of the Neurodiversity Concept
    2. Appendix 2: Response to Dekker’s "Recent behaviour" smear
    3. Appendix 3: Preface to Dekker's additional allegation
    4. Appendix 4: Harvey Blume's role

Summary

In this document I provide verifiable evidence that this item in Martijn “McDutchie” Dekker’s Blog is an assortment of:

  1.  Ignorance of academic protocols
  2.  Confirmation-biased false memory
  3.  Anecdotal testimonies
  4.  Anachronisms
  5.  Confusion about the difference between a “term” and a “concept”
  6.  Negatively-biased interpretation of ambiguities
  7.  Quotes taken out of context

All of which add up to a defamatory polemic.

Response to Dekker’s “Corrections”

Apologies for length of this response. I found it necessary as Mr Dekker has proved the time-worn adage that “a lie goes around the world in the time it takes the truth to tie its bootlace”. And that was before the Internet. Dekker’s calumny did the rounds within a week if not a minute.

Dekker’s Summary

My corrections

Along with many others, I credited Judy Singer with coining the term ‘neurodiversity’. As it turns out, that was in error.

I have found evidence that the neurodiversity concept was fully formed on my online autistic-run group ‘InLv’ as early as October 1996, well before Singer's 1998 thesis. The term ‘neurological diversity’ was already used then as well. The concept and the term both came from the wider community of autistic/ neurodivergent* people, and no one is their sole originator.

I am confident that there was no “error”. As was my responsibility as a scholar, I made a full literature and internet search at the time of writing. The word did not exist, in writing, let alone in the sociological context of the “social constructionist model of disability”.

It is evident that Mr Dekker is confusing “term” with “concept”. The former means “word”, the latter means “idea”

I have never claimed to coin the concept of “neurological diversity”, nor that I was the “sole originator”.

But I did coin the term “Neurodiversity” as a buzzword to popularise the concept. No evidence to the contrary has been found. As above, I made a thorough literature and online search as required by my university’s ethics committee at the time, and found nothing.

It is easy to mix up the two words, and I have sometimes fallen into the the trap myself. But I could not have foreseen that my obscure thesis, which I never imagined would be read by anyone!, would end up subject to such forensic scrutiny.

It should be noted that I am Australian. If the word or concept was in verbal currency in the USA I did not know about it

I did not join INLV till late 1997

Further proof that I didn’t claim to originate the term: my thesis was subtitled “A personal exploration of a New Social Movement based on Neurological Diversity”. An intuitive reader would readily discern from this that the movement was already formed. As I noted in my thesis the concept was in the “zeitgeist”.

The point is that even if some individuals may claim that they were already talking about the concept, nobody had analysed it in print, let alone in a scholarly work.

A note about Harvey Blume


 

Dekker’s Introduction

My corrections

He wrtes: In my chapter on InLv’s history in Steven Kapp’s edited collection Autistic Community and the Neurodiversity Movement, I wrote:

”In 1998, Judy Singer from Australia, who identified as having “AS [Asperger’s Syndrome] traits”, turned these InLv discussions into an influential sociological thesis [8] and book chapter [9], citing plenty of group members with their permission, and adding the requisite academic language to lend it legitimacy. Thus, she is correctly credited with coining the term ‘neurodiversity’ [10].”

 

 

While I appreciate Mr Dekker’s beginning on this bright note, it does discredit Mr Dekker’s later libellous claims

Yet, in 1998, Judy Singer wrote in a conversation with another neurodiversity pioneer, Jane Meyerding:*

“I’m not sure if I coined this word, or whether it’s just ‘in the air,’ part of the zeitgeist”.

This quote is out of context, and shows Mr Dekker’s confirmation bias: of all the possible explanations of a quote out of context, he has chosen the worst possible interpretation.

On the contrary, the full conversation shows that I was pursuing “due diligence” by trying to ensure that I was not succumbing to confirmation bias. As a non-academic, Mr Dekker would not know that sociologists are expected to show “reflexivity”, i.e. question our own motives and the originality of our ideas. (As, of course, should any ethical individual).
Thus I contacted Jane Meyerding as she was an American pioneer of the movement. If the “N word” was in currency in the USA she would have known. She replied that she had not heard it before.


 

Dekker’s allegations:

My Corrections

But in recent years, Judy Singer has been claiming, and endorsing claims from others, that she not only coined the term ‘neurodiversity’ but also came up with the concept itself (e.g., 1, 2, 3 ).

As a result, she is widely considered to be the “mother of neurodiversity” and has received corresponding accolades.


NB: The large highlight font was chosen by Mr Dekker. Suggesting that what has distressed him most of all is that I have received s0-called “accolades”. 

 

This is false. I have never “claimed” to coin the concept of “neurological diversity”, nor that I was the “sole originator”. But I did coin the term “neurodiversity” with a specific purpose that I made clear: to suggest a catchy name for this “new social movement based on neurological diversity as I noted in my Appendix:Background Knowledge

1, As above

2, This refers to an incident that has nothing to do with my work on ND. To save myself work, I should ignore it, but since Mr Dekker has decided to throw all the mud he can find at me, I have added an explanatory appendix.

3. This is another mix-up of the words “term” and "concept”. If you read the actual words in the linked piece (which was written by the Neurodiversity Foundation, not by me,) you will see that it is in recognition of my academic work. 

Dekker appears to be making a defamatory insinuation that I did my work to court fame. On the contrary, I did not expect my work to be noticed. Naturally, I have enjoyed the "accolades".And as I have continued working fulltime in the field (practically never for remuneration, as my main concern is to prevent the inevitable misunderstandings and misappropriations of the concept), I feel I deserve some. 

But the price of fame has been high, thanks not only to the inevitable trolling on social media, but also by seriously defamatory acts such as Mr Dekker’s.

I am sorry he feels under-appreciated. I believe he deserves accolades too for starting up the excellent INLV list. 

What actually happened is that Singer joined the online community I was running, InLv, and learned the concept from us, from observing our discussions and interviewing some of our members. This can be verified by reading the ‘Method’ chapter on page 51/52 in Singer’s own 1998 thesis. It was also acknowledged* by Singer herself as recently as 2018.

*(Orange highlights by JS)

This did NOT “actually” happen.

I did not “learn the concept” from InLv. What was immediately obvious from InLv and other AS support groups was that the members were there to share their experiences. To the best of my memory, I saw little, if any evidence of “sociological awareness” let alone of the “social (constructionist) model of disability” which my work was grounded in. This model was then restricted to Intellectual, Physical, and ‘Mental Illness’”, which did not fit Autistics, so I tweaked it and coined Neurodiversity to augment it.

Please do read my method section, as it will become evident that Mr Dekker does not appear to have any understanding of academic process. I created a hypothesis from my membership of InLv (and other egroups) as a “participant observer”, w ith the permission of the people I interviewed.

Mr Dekker’s use of the word “acknowledged” is another sign of his ignorance of academic procedure in the social sciences. That word implies that a misdemeanor or crime had been committed! In the method section, I stated my method to ensure accountability, it was passed by my supervisor and my university’s ethics committee, and there was nothing to “acknowledge”.

It may also be worth noting that Singer:

  1. Did not fully consider herself part of the autistic or neurodivergent community.

































  2. In that ‘Method’ chapter, she also describes “sometimes strategically switching from NT [neurologically typical] to AS [Asperger's syndrome] depending on the needs of the moment”. 

This is an example of Dekker’s negatively biased interpretation of my words, and it is utterly untrue

  1. The reason I couldn’t fully identify as autistic, is due to the trait of “honesty” and blunteness, which as Dekker should know, is considered one of the strengths of the autistic mind. And it was honest to say so because I knew I had more difficulties than could be reduced to that one word. I knew I had autistic traits e.g. I often puzzled why I couldn’t bear to make eye-contact. And I do have an official diagnosis of Aspergers Syndrome based on the DSM IV.

    It is worth noting that, at that time, diagnoses of Aspergers, Autism, ADHD, and Dyspraxia were siloed. The medical profession then seemed largely unaware that co-occuring conditions were possible. As it turned out, I also inherited ADHD from my father, but what actually made my life most difficult in a sport-loving nation like Australia was being dyspraxic and feeble. I was often humiliated by sports teachers and by being the last to be chosen in teams

    I was a full participant in the online autistic world, - on INLV and elsewhere. INLV was primarily a support group where we all shared our stories and supported each other. It was a wonderful resource, and Martijn did a great job with it.

    As a result of my Asperger diagnosis, I became a recipient of the disability pension but I knew I had traits of of all those above. This is precisely why I was in the position that caused me to come up with the idea of Neurodiversity. 

    Dekker’s point is also anachronistic. In 1996, the word #neurodivergent did not exist, since it should be obvious that I created the noun it is derived from. And Kassianne Asasumasu only developed it in early 2000

  2. There is nothing wrong with “switching codes” for different situations. Given the stigma attached to autism, I was forced to mask for most of my life. Mr Dekker should be able to understand that.

Given all that, as well as other recent and not so recent developments concerning her harmful behaviour towards vulnerable minorities, it is time to set the record straight

The so-called “not so recent development” refers to the fact that I founded and ran ASpar a support group for people raised by parent/s on “the spectrum”. About 200 people joined and we shared our stories. Obviously those who joined did so because they had experienced a distinct pattern of dysfunctional parenting commensurate with the DSM criteria for autism at the time, which included “lack of empathy”. I made clear that we were telling our stories. And I went to a lot of time and effort to explain that others with autistic parents may have had positive experiences of parenting. Which Mr Dekker seems not to have read. 

Another example of Dekker’s anachronisms is that the word “Autism” no longer means what it did 30 years ago. And what used to be called “Asperger’s” has now become more of an identity for many people, and exhibits all the positives and negatives that go with identity politics. Including the tendency to accentuate one’s positive traits, while focussing on society’s oppressive behavior.

Dekker’s “recent development” is that I join what I confidently assume to be the majority of women worldwide who find it absurd that individuals with male anatomy but without a uterus can declare themselves to be "women."

It is quite a libellous stretch to call the understanding shared by the majority of humans that "Man /Woman are the primary binary", an example of “harmful behaviour”. Many non-Western peoples recognise more than 2 sexes, and they all have had the dignity of naming themselves. It seems like Western Trans militants have bought into the very binary that oppresses them. 

See my Appendix 

 

Prior art’

Misleading interpretation of “Prior” Art

As it turns out, not only the concept but also the term well predates Singer’s thesis. In a search in what is left of my old InLv archives (which are confidential), a group message turned up in which InLv member Tony Langdon speaks of the potential benefits of “the neurological diversity of people” – on the 29th of October 1996

 

Nothing "new" has “turned out” 

The term “prior art” has a specific legal meaning in patent law for people who want to patent their invention. I have never wished to “patent” or “copyright” the Neurodiversity term or concept.

Mr Dekker again confuses “concept” and “term”.

I repeat that I did not come up with the concept of “neurological diversity”. But I did come up with the buzzword that popularized the concept #Neurodiversity.

 

[… Langdon’s message is reproduced below under
The evidence, in full and by permission. It was written by Tony Langdon and is part of a longer discussion thread that started out being about Oliver Sacks but had drifted to discussing deficit vs. difference in general. The term ‘neurological diversity’ and the concept behind it are fully there, roughly two years before the publication of Singer’s 1998 undergraduate thesis purportedly coining the term and inventing the movement.

The idea of neurodiversity was very much ‘in the air’. Tony was likely not the first to express these ideas either, nor can we confirm he was the first to come up with the term.

What is certain is that Judy Singer joined us on InLv, and got the idea from us. She should not be appropriating it and she should not have been lauded for inventing it.

 

 

I did not “purport” anything. Others may have ascribed that to me. I can not be expected to be aware of every single thing that is attributed to me.

I certainly did not make the absurd claim that I “invented the movement”.

I did absolutely not “get the idea” from InLv. My idea was socio-political, and set in an academic thesis. It seems that Dekker thinks “Neurodiversity” is a condition. It does not mean Neuro”Other”. It is based on Biodiversity, the idea that diversity is a positive for any ecosystem. InLv was a support group. I cannot recall any remotely academic discussion about the sociology of “the Autistic Self-Advocacy Movment”, as we then called ourselves. and why it arose specifically in the seismic paradigm shifts that culminated in the “postmodern era”. In case Dekker has not actually read my thesis, answering those questions was the major focus of my work. The secondary focus was a section on my lived experience growing up as an “outsider”.

Of course the concept of “neurological diversity” does not belong to any one individual. My original work pointed out that it constellated from the social relations of the post-modern era. I focused on exploring the reasons for the emergence of a “new social movement based on neurological diversity” (a subtitle of my thesis).

 

She certainly did the world a favour by describing our neurodiversity ideas and introducing them to academia*, but the concept does not belong to her.

As a full participant, I contributed and shared my ideas and perspectives too.

If only the concept did belong to me! - I’d be a millionaire, instead of an age pensioner living hand to mouth in public housing. And NO. I have not made money out of this. Another of my autistics traits is that my obsessions are with the pursuit of Truth not the pursuit of money. Thus I’ve got none. I am one of the majority of single older Australian woman who have ended up retiring with practically no savings, thanks to structural injustice against women.

 

Dekker’s Conclusion

My Corrections

Both the ideas and the term ‘neuro(logical) diversity‘ came from the 1990s online community of “autistics and cousins” (consisting then of ANI-L and InLv). The neurodiversity movement emerged from our collective lived experience as neurodivergent people. Designating any person as its sole originator is a mistake.

Martijn Dekker deserves huge credit for his prescience in starting InLv. He was very much a leader who emerged from our collective experiences, just as I like to think I was a writer who did the same. He did a great job, and I give him all respect.

But Dekker clearly, does not understand the difference between citation and appropriation. Nor does he understand the role of Sociologists which is to:

  1. derive data derived from interviewing subjects - with their permission and ethical oversight
  2. aggregate and analyze the data
  3. form hypotheses and conclusions
  4. publish their conclusions for review and informed debate

I certainly did not designate myself as the “sole originator” of “the movement”. In my presentations I often described this phenomenon as a “discourse” that had no leader and no official spokesperson. I was a full participant in the movement, and also an academic observer and first described the phenomenon in a sociology thesis as a “participant-observer".

Appendix 1: The Provenance of the Neurodiversity Concept

Let me begin by asserting that I did indeed coin the word “Neurodiversity” first published in my Honours Thesis presented to the University of Technology Sydney (UTS) September 1998[1] and subsequently abridged as a chapter in Disability Discourse, a book published by the UK Open University Press[2] It is a term often misunderstood, so I want to make it clear that I coined it for a specific purpose. I saw that the pioneering work of the Autistic Self-Advocacy Movement was being emulated by other neurological minorities e.g. groups medically-labelled with ADHD and the “Dys”-abilities. And it was evident that they had the potential to become the last great Identity Politics movement to emerge from the 20th century. Below is 

For me, the significance of the “Autistic Spectrum” lies in its call for and anticipation of a “Politics of Neurodiversity”. The “Neurologically Different” represent a new addition to the familiar political categories of class / gender / race and will augment the insights of the Social Model of Disability. (p12)

The rise of Neurodiversity takes postmodern fragmentation one step further. Just as the postmodern era sees every once too solid belief melt into air, even our most taken-for granted assumptions: that we all more or less see, feel, touch, hear, smell, and sort information, in more or less the same way, (unless visibly disabled) are being dissolved. (p12)

I had no idea that anyone would ever read my thesis beyond my supervisor and marker. The word came to me in an “Aha!” moment, and I didn’t analyse it. All I intuited was that it was a word that perfectly suited its times, when “hard” neuroscience was eclipsing the soft “science”, of psychodynamics - if it was a science at all.

The meaning seemed “obvious” to me and I forgot all about it, just another idea in my work. But I did know, and was proud of the fact that mine was the first academic sociological analysis of this new social movement, based on the principles pioneered by the academic disability rights movement’s social constructionist model of disability.

The word caught on because it was generated by the zeitgeist. Which had a name “Postmodernism” Since we have moved from Newtonian Modernism to Quantum Era Post-modernism and it seems I was the one who channelled it. Yes, I am an individual with an ego, but at the same time I’m just a node in the intersections of my personal history within world history, geography, and genetic heritege.

Appendix 2: Response to Dekker’s "Recent behaviour" smear

This refers to a couple of twitter posts by an individual called @SpookyLuka which can be seen at https://twitter.com/SpookyLuka/status/1670992079005302787. If you can forgive me for being human, and feeling "really pissed" (as Dekker's crony @drrjchapman called my reaction to their charming twitter exchanges), let me say that this "Spooky Luka" appears to have butterflies where their brain is supposed to be. 

My apology was for an ill-timed but hearfelt twitter post, in which I retweeted and agreed with J.K. Rowling that “Trans Women are not Women”, an opinion I am sure is shared by most women who do not live in the trendier enclaves of the Anglsophere. All hell broke loose as a result. 

As is evident from the text, I rescinded the apology because I did not write it in the first place.  The “apology” was actually ghost written for me by two prominent business people in the Neurodiversity movement, who were naturally worried that their businesses might suffer from their close association with a reprobate like me.

Being a naïve, altruistic fool, as I realised in retrospect, I felt concerned for their businesses and their responsibilities to their employess, so I agreed to it, and I won't name them now either. 

But it was so badly written and unlike my writing, that the social media mob smelled a rat anyway. I regret my self-sacrifice, because neither of the two business people have ever thanked me for the drubbing I took on their behalf. Call it autistic naivete on my part.

I continue to affirm that Transwomen can never be women and should choose their own name – as do transgender people in many cultures that are not fully colonised by Western Christian Patriarchy.

This does not make me transphobic. It makes me trans-affirming – because the act of self-naming is the most powerful action any minority group can take. To be named by the majority, or to desperately cling to their categories, is both disempowering and humiliating

The Reality
 
Countries that recognise and name more than 2 genders



Acault (Myanmar) Alyha and Hwame (Mojave) Ankole (Uganda) Aravani (Tamil Nadu) Ashtime (Maale Ethiopia) Bakla (Philippines) Bangala (DR Congo) Burrnesha (Albania)Calabai, Calalai and Bissu (Indonesia) Chuckchi (Siberia) Fa'afafine (Samoa) Fakaleiti (Tonga) Femminiello (Italy) Guevedoche (Dominican Republic) Hijra (South Asia) Jewish Talmud (6-8 Named Genders) Kathoey (Thailand) köçek (Ottoman Empire) Lhamana (Zuni) Mahu (Hawaii) Mamluk (Egypt) Mashoga (Kenya Tanzania) Metis (Nepal) Mino (Benin) Muxe or Muxhe (Zapotec of Oaxaca) Nadleehi and Dilbaa (Navajo) Ninauposkitzipxpe (Blackfoot) Quariwarmi (Inca Peru) Sekrata (Madagascar)Sistergirls and brotherboys (Aboriginal Australian) Skoptsy (Russia) Transsexuality in Iran Travesti (South America) Waria (Indonesia) Whakawahine (Maori New Zealand) Winkte (Lakota) Xanith (Oman)

See https://www.thirteen.org/program-content/independent-lens-a-map-of-gender-diverse-cultures/

Appendix 3: Preface to Dekker's additional allegation

I have chosen not to respond point by point to Mr Dekkers further allegation below as I hope that I have already proven beyond doubt that Mr Dekker is an “unreliable witness”.

NB:  Important to note these conversations took place in 1996. I did not join InLV till late 1997

As Mr Dekker doesn’t appear to have an academic background in the social sciences, he cannot be blamed for not being acquainted with the Social (Constructionist) Model of Disability which provided the framework for my thesis. The “social model” which critiqued the prevailing “(psycho-) medical model of disability” emerged in the late 1980s, and was pioneered by the giants of the movement including Anne Shearer, Mike Oliver, Lennard Davis, Susan Wendell,Tom Shakespeare,

Again, I did not claim to discover any of these. All these new ideas were part of the postmodern zeitgeist.

I cited them.

But what I do claim is that mine was the first academic work to aggregate, analyse and theorise data on the rise of a “new social movement based on neurological diversity”, and thus to add the new category of Neurodiversity to the limited categories of “Physical, Intellectual and ‘Mental Illness’”. Until then, neurodivergent people would either have been masking or being defined as mentally ill - and then being inappropriately treated by the psycho-medical complex of the time

There is nothing new about the conversations below. They too were part of the Zeitgeist of Postmodernism and were going on all the time by then.  But they were anecdotal critiques of psychology. Nobody AFAIK was doing any sociological analysis.

Conversation between Schwarz and Langdon

Me: NB: this is a verbatim copy, but I have taken out unnecessary paragraph breaks for the sake of readability

Dekker writes:

Dekker: Below, the quoted text fragments prefixed by ‘ps>’ are by Phil Schwarz. The rest is Tony Langdon’s reply to Phil, interspersed as was common then. The message content is original and unedited. I added the emphasis. Many thanks to Tony Langdon and Phil Schwarz for giving me their permission to quote this in full.

Sender: brain@inlv.demon.nl

Errors-To: postmaster@inlv.demon.nl

Reply-To: brain@inlv.demon.nl

Message-Id: <bf8_9610292048@freeway.apana.org.au>

Precedence: Bulk

X-Listserver: Macjordomo - A Macintosh Listserver by Michele Fuortes

Date: 29 Oct 96 09:41:10 +1000

From: Tony Langdon <tlang@freeway.apana.org.au>

To: Multiple recipients of <brain@inlv.demon.nl>

Subject: Re: Oliver Sacks

[From the Brain InLv forum. Topic: (dys)functions of the brain.]

It is  29 Oct 96 01:43:05,

We'll return to pschwarz@ix.netcom.com and All's discussion of Oliver Sacks Heh... on ANI-L, whenever there is an outbreak (!) of Theory of Mind, someone or other is likely to wisecrack something like "Quick, call Uta [Frith]..."

Hehe. :-) I don't know about Baron-Cohen -- who, for choosing an insipid, scaled- for-media-consumption-as-single-sound-bite title like "Mindblindness", is really the one who should be getting the catcalls -- but Frith herself, if her web page (http://www.cdu.ucl.ac.uk, I think) is any indication, has come at least to the realization that most HFAs develop a theory of mind (not' necessarily identical to the NT variety) by adulthood, by (paraphrasing her here) mechanisms yet unknown. (I consider it classic reverse engineering, myself :-) .)

You're probably right here. NT's don't have any idea what an undertaking this reverse engineering is. :-) And Francesca Happe, who studied under Frith, seems to be going further: to regard seriously the notion that HFA/AS -- or at least the bigger-than-anyone- is-prepared-to-realize undiagnosed penumbra -- really represents a personality type, new extrema on the dimensional axes of normative personality, that break down the standard psychiatric model that posits a wall, a discontinuity, between "ill" and "well".

Interesting conclusion. I've known for a while that traditional personality types 'break down', when I'm around. The 'models' psychologists don't fit, and I fit discontinuous fragments of most of the accepted types. (like existing in a higher dimension,psychologically speaking? :) ).

This is very encouraging to hear. In effect she takes the same stance I do: that autistic wiring-of-mind in and of itself is a difference, not a defect, and that disability arises from the incompatibility of those differences with a less-than-accepting society, and from secondary effects that accompany the wiring differences -- rigidity of thought, phobias, etc., born of perpetually- reinforced disconnects, setbacks, and loss of control of one's own condition -- basic lower and middle layers on the Maslovian pyramid.

I also believe that this is a lot closer to the real picture than what most psychologists think. My own experience is that while I have noticible defecits in social function, and some "everyday" aspects of life, I also have a lot of real, practical abilities.

For example, being in a technical support field, it looks, from my perspective thatmost NT people range from plain 'stupid', to positivitly 'disabled', when it comes to dealing with any hi-tech gizmo. In a sense, this is a special situation where the rules of common-sense are turned around in away that favours me. I'm becoming more sure that what allows the human race to progress socially and technologically is the neurological diversity of people. I.e., the atypical among a society provide the different perspectives needed to generate new ideas and advances, whether they be technological, cultural, artistic or otherwise.  (JS. Yellow highlight added by Dekker, not me)

Perhaps this point of view will lead to a clinical psychotherapeutic future in which mere oddness or difference in AS is not symptomatized, and instead clinical and therapeutic focus are brought to bear upon the truly disabling secondary effects.

The day this happens will be a bright one. However, I believe that a lot of this 'curing' needs to be applied to society at large, rather than the people with AS, for a long term cure to be achieved.

IM(NS)HO, Western society is very sick and in need of urgent treatment... :)


Appendix 4: Harvey Blume's role


 Vale

Harvey Blume

17 Oct 2023

I was shocked to discover that Harvey passed away while I was writing this section. 

Last week when I heard the news, it was about 3.30 in the morning. I was having a sleepless night and I wrote this. I'm a sceptic, but what can I make of this? It seems a hell of a coincidence that I should suddenly wake up and wonder if he was "still alive".  

I couldn't sleep last night. All kinds of thoughts cycle through my brain in these dark days, and finally thoughts of Harvey Blume popped up. He and I corresponded intensively for a year at least from 1997, and intermittently for the next 10. Not a lot about about Autism and ND, mostly about Jewish identity and wide-ranging issues of current politics or the arts. We fell out a long time ago mostly over Middle East Politics... not an unusual thing to happen ... and other things which I may write about, and no, we were not "in a relationship". Still, over the years I have occasionally thought to myself... "I wonder what Harvey is up to" ... and I go check out his Facebook page.
But this time, I had a different, an unexpected thought. I found myself thinking..."I wonder if Harvey is still alive"... and then ... this ... what came up first on google...

Obituary...

I tell myself "Surely Harvey Blume is a common name in America," 

But there is the picture I took of him when I met him in Boston.  

 I'm gutted
Harvey had the most brilliant intellect of anyone I have ever met. He had a dazzling mind and way with words. I visited him in Boston at a time I can never forget - In Septermber shortly after 9/11. I took the picture below at a cafe near his home. 

Harvey was a shining star even within the intellectual hothouse that is New York-Boston. He is a great, great loss to the world. 

In the traditional Jewish words of condolence, I wish all Harvey's near and dear, "a long life"

I was not able to repost Harvey's Obituary here but it can be found on the Boston Globe site


 

 -----------------------------------------------------------

The rest of this appendix was written before I heard the news

The Provenance

There have been concerted efforts from time to time to give Harvey Blume equal billing on the provenance of the term Neurodiversity, especially on Wikipedia. He and I communicated for several years beginning in 1997, mainly by email and occasionally by phone. 

The reality is that Harvey got the word from me. 

I first discussed my thoughts on Neurodiversity with Harvey in 1997 via emails which I archived quite a while ago. And due to a surprising discovery while unearthing several cases if documents, I even have the yellowed paper transcripts of our emails to prove it. 

Being a journalist he had no obligation to cite me. OTOH I cited him in my thesis as I admired his brilliant way of writing about neurological diversity, which as I said above was NOT a new idea. It should be noted Harvey had no idea of Disability Politics, or the Disability Rights Movement or "the social model of disability" until I filled him in on it. Nor did Harvey have any skin in the game. He literally wrote that one piece and moved on from the field. OTOH, I remind readers that this work is my life - a lifetime of outsiderhood.  Then add to that the hard graft of years of scholarship to produce my theories. 

It is hard to know why the Wikipedia entry on Neurodiversity keeps being changed to minimize my role. Is it due to innocent ignorance by unqualified self-appointed "editors" or hardcore malice? 

Innocently enough perhaps, if edited by entitled Americans and Brits who imagine that every big idea must originate in the Northern Hemisphere. There's a word for that: Northocentricism

Or has the Wikipedia entries about my work been deliberately rewritten by nameless, envious malicious cowards? 

In short, ignore Wikipedia on anything to do with current issues. 

Harvey Blume also published the term in the Atlantic Monthly, September 1998 well after our discussions and correspondence. Note that he gathered data from the spoof site ISNT - Institute for the Study of the Neurotypical - where I was a contributor. You will find a couple of satirical pieces by me there. Now archived at https://erikengdahl.se/autism/isnt/ntskills.html

Judy Singer - Bibliography

Thesis

Singer, J. (1998). Odd People In: The Birth of Community Amongst People on the “Autistic Spectrum”: a personal exploration of a New Social Movement based on Neurological Diversity. A thesis presented to the faculty of Humanities and Social Sciences in partial fulfilment of the requirements for the degree of Bachelor of Arts Social Science (Honours), Faculty of Humanities and Social Science, University of Technology, Sydney, 1998.

Book

Singer, J. (2016) NeuroDiversity: The birth of an idea. Kindle https://www.amazon.com/NeuroDiversity-Birth-Idea-Judy-Singer-ebook/dp/B01HY0QTEE/ Also available in paperback

Book Chapters

Singer, J. (1999). Why can't you be normal for once in your life?: From a 'Problem with No Name' to a new category of disability. In Corker, M. and French, S. (Eds.). Disability Discourse Open University Press UK https://www.worldcat.org/title/disability-discourse/oclc/39182312

Singer, J. (2003). Preface: Travels in Parallel Space: An Invitation. In Miller, J. K. (ed). Women from Another Planet? Our Lives in the Universe of Autism 1stBooks Library, New York

Singer, J. (2019) Reflections on the Neurodiversity Movement 20 years on. In Neurodiversity: 20th anniversary of the birth of the concept: Advocacy for positive recognition of human diversity and its future available https://www.etsy.com/ca-fr/listing/701221413/neurodiversity-20th-anniversary-of-the?
French Language Version available at La Neurodiversité - 20e anniversaire de la naissance d'un concept: Plaidoyer pour la reconnaissance positive de la diversité humaine et pour son avenir https://www.etsy.com/ca/listing/688599087/neurodiversity-20th-anniversary-of-the?

Government Publication

Singer, J. (2000).  Disability Employment Services Information Kit.  Department of Family and Community Services, Australian Government publication (Comprises 8 illustrated booklets, half in Easy English and half in Pictorial English, fact sheets and posters. 50,000 copies in print, distributed to every Disability Employment Service office in Australia)

Academic papers

Singer, J. (1999). No Longer Fair Game: Human Rights for Nerds, Weirdoes and Oddballs: The current situation of people with Autistic Spectrum Disorders in the NSW education system. A paper given at the 1999 Conference on Human Rights, Disability, and Education at the University of NSW.

Singer, J. (1999). Uncovering the Neurological Procrustean Bed. A paper given to the "Sydney Disability Research Network". University of Technology, Sydney

Singer, J. (1999). Voice and “Neurological Difference”.   A seminar paper given to the "Sydney Disability Research Network"  UTS

Blog

Neurodiversity 2.0

What is Neurodiversity?

Satirical pieces

Singer, J. (1998) NT Social Skills Deficiencies: A case study available archived online by Eric Engdahl at The Institute for the Study of the Neurologically Typical  https://erikengdahl.se/autism/isnt/

Endnotes



[i] I have been well aware of intersexuality since the 1990s and offered it as a choice in my “Gender” question for prospective members. I don’t recall Dekker’s InLv offering such a choice.

[i]What is harmful is that Western Christianity still adheres to the patriarchal male/female binary, with scant reference to intersexuality.  Other more enlightened culture many in Africas and Indigenous Australia recognise many genders, names them thus affording dignitiy to all. For example the Talmud recognised 6 to 8 different genders and they all have names. Those keyboard warriors against what they like to slur as “Terfs” have no idea how culturally blinkered they are.

* Content created on this website by Judy Singer is licensed under a Creative Commons Attribution-NoDerivatives 4.0 International LicensePermissions beyond the scope of this license may be available at https://neurodiversity2.blogspot.com/p/copyright.html.

Monday 6 November 2023

Vale Harvey Blume






Last week when I heard the news, it was about 3.30 in the morning. I was having a sleepless night and I wrote this, perhaps presciently. After all, it had been more than a decade since we corresponded. 

All kinds of thoughts cycle through my brain in these dark days, and finally thoughts of Harvey Blume popped up. He and I corresponded intensively for a year at least from 1997, and intermittently for the next 10. Not a lot about about Autism and ND, mostly about wide-ranging issues of current politics or the arts. We fell out a long time ago mostly over Middle East Politics... not an unusual thing to happen ... and other things which I may write about, and no, we were not "in a relationship".  Still, over the years I have occasionally thought to myself... "I wonder what Harvey is up to"  ... and I go check out his Facebook page.
But this time, I had a different, an unexpected thought. "I wonder if Harvey is still alive"... and then ... this ... what came up first on google...

Obituary...

Harvey Blume is a common name in America, surely, I tell myself ...
I'm gutted

Harvey had the most brilliant intellect of anyone I have ever met. He had a dazzling mind and way with words. I visited him in Boston at a time I can never forget, just 2 weeks after 9/11. 1. Took this pic in a cafe called "Carberries" near where he lived. 
He was a shining star even in the intellectual hothouse that is New York-Boston and a great, great loss
In the traditional Jewish words of condolence, I wish all Harvey's near and dear, "a long life"
I was not able to repost Harvey's Obituary here but it can be found on the Boston Globe website https://www.legacy.com/us/obituaries/bostonglobe/name/harvey-blume-obituary?id=53455963

 

Tuesday 14 March 2023

How not to define Neurodiversity

Well-meaning but misguided...

 
I am appalled to find that the influential journal, Psychology Today, has adopted the above misconceived definition of Neurodiversity disseminated by Stanford University psychiatrist, Professor Lawrence Fung. And that it has been "approved" by a host of their in-house "experts". 

Before proceeding please see my Official Definition of Neurodiversity 

My concept of Neurodiversity was intended to wrest "Neurological Disorders" from the exclusive ownership of the Psycho-Medical professions, to the extent that they practiced under the mindset of what we called the Medical Model of Disability, the idea that disability is located in the body of a contextless individual. Since the 1980s, disabled thinkers and activists, such as Michael Oliver and Lennard, challenged this one-sided model with a Social Constructionist Model. This balanced view sees Disability as part genetic and part constructed by a given society's assumptions, enablers and barriers. e.g. Western societies tend to demand eye-contact, thus stigmatizing many Autistics.Other Societies proscribe it in certain situations: e.g. Indigenous Australians, Ultra-Orthodox Jews. 

Let me make clear: I have huge respect for the psycho-medical professionals. I could not live without my doctors, my medications or my regular sessions with my psychologists, physios, pharmacists, dentists, and other ancillary professions. Why else would I spend about $8,000 per annum on their respective services? And that's after Medicare rebates! How else would I still be alive to harangue you all in my70s? I cannot help observing however, that while psychiatrists are at the top of the tree when it comes to prestige and income, I have found them the least knowledgable and helpful when it comes to understanding neurodivergent conditions. 

So, my intention was to balance the Medical Model with the a Social Model which frames Disability in the context of the intersections of class, gender, socio-economic status, disability, age, etc and gives voice to us as patients, clients, consumers. That is all. 

I know that Dr Fung does great work at Stanford University to afford practical help neurodivergent people. 

But he has no right to redefine "Neurodiversity", which he clearly does not understand. 

Not only is his definition a one way route back to the old Medical Model that wants to define ND in terms of individual "brains" devoid of social context, but it beggars belief that a professor in a science-based profession does not understand basic statistics. Surely...

IF everything is NORMAL, then NORMAL has NO meaning!

Increasingly I am finding that the Psycho-Medical professions are trying to corrall the concept of Neurodiversity back under their own sphere of influence. 

Not that I think they have bad intent. Instead, they suffer from "When-all-you-have-is-a-hammer, everything-looks-like-a-nail" syndrome. 

So, when all you have is psycho-medical training, everything looks like a psycho-medical problem.
 
Meanwhile the general public and the media are awed by psycho-medical authority. Not unwarranted by any means, as I have referred to above. It's just that Neurodiversity is not a Medical Problem. 

Neurodiversity, like Biodiversity, refers to the degree of variability of a specific variable in a specific location. In the case of  Neurodiversity, it refers to the entire human population of the location called Earth. 

Its usage, as I defined it, was simply to name a Social Movement for people who were misdiagnosed, misunderstood and marginalised by categories invented by the Psycho-Medical Model which aligned itself very much with the needs of the 20th century capitalist economy for a standardised, obedient work force. My intent was  
  1. to broaden the scope of "Disability", which, in 1990s only included 3 categories:
    1. Physical
    2. Intellectual 
    3. Mental Illness (which included everything else that the medical profession didn't understand)
Clearly another category was needed: Neurodivergences is not "mental illness" even though many of us may have been rendered mentally ill by punitive attempts to "normalise us", and by stigma, exclusion, ridicule and discrimination. 

      2.  to ensure that Neurodiversity was always contextualized by what we now call Intersectionality

For those who get histerical* (sic) about "Identity" politics, btw,  suggest to them that they should refuse to fill in their National Census, because if will ask them for their:

Ethnicity | Sex or Gender|  Disability | Class aka Socio-Economic Status| Age etc

These intersectional categories determine our degree of privilege or disadvantage. They have always been tools of government who represent society's attempt at distributive justice, ie "who gets what" support in society. 

So let's keep Neurodiversity as a banner term for our Activist Movement
by Neurodivergents for Neurodivergents!


* You don't have to have a womb to get irrationally angry