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.
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Click to read Dekker's piece
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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
- Summary
- My response
to Dekker’s “Corrections”
- Appendices
- Appendix
1: The Provenance of the Neurodiversity Concept
- Appendix
2: Response to Dekker’s "Recent behaviour" smear
- Appendix
3: Preface to Dekker's additional allegation
- 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:
- Ignorance
of academic protocols
- Confirmation-biased
false memory
- Anecdotal
testimonies
- Anachronisms
- Confusion
about the difference between a “term” and a “concept”
- Negatively-biased
interpretation of ambiguities
- 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
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My corrections
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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.
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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
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My corrections
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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].”
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While I appreciate Mr Dekker’s beginning on this bright note,
it does discredit Mr Dekker’s later libellous claims
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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”.
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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.
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Dekker’s allegations:
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My Corrections
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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”.
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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.
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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)
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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”.
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It may also be worth noting that Singer:
- Did not fully consider herself part of the autistic
or neurodivergent community.
- 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”.
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This is an example of Dekker’s negatively biased
interpretation of my words, and it is utterly untrue
- 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
- 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.
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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
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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
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Misleading interpretation of “Prior” Art
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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
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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.
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[… 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.
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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).
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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.
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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.
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My Corrections
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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.
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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: - derive data derived from interviewing subjects - with their permission and ethical oversight
- aggregate and analyze the data
- form hypotheses and conclusions
- 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".
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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
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.
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 License. Permissions beyond the scope of this license may be available at https://neurodiversity2.blogspot.com/p/copyright.html.