The Price of Fame: Envy

First published September 204

Click to read my rebuttal of the false allegations

I cannot deny enjoying the recognition that I have received since my 1998 Honours thesis in which I coined the term Neurodiversity was rediscovered in 2013 by Steve Silberman*.  I worked hard for it and based it on the "lived experience" of my family, a life of hardship, outsiderhood, disclocation and poverty in a land of opportunity, which I later realised had much to do with the fact that the female line of my family are all autistic. And compounded by the injuries of history, which turned us into refugees from Eastern Europe when I was 5 years old.  But with Fame comes a price. We are all prone to a selection of the Seven Deadly Sins, but I am not in a confessional mood about mine. So let's move straight on to the sins of the self-identified "international scholars" who over the past 6 months since the 12th March 2024. have been making my life a misery with their selectively researched and libellous falsehoods I don't know which other sins they are capable of, but there is one that is suggestive. The perceptive among you will have guessed it... Envy  Hieronymus Bosch the Seven Deadly Sins

Over the past year, two prominent figures in the development of the neurodiversity discourse, Robert J Chapman and Nick Walker, along with their associates, have initiated a disinformation campaign targeting me

At best, for their sake, and my own belief in human decency, I can only hope these people sincerely believe their calumnies, and this is not simply a pitiful case of vicious academic rivalry.

They appear to rely heavily on the testimony of Martijn Dekker, a computer programmer, who had the skills to set up InLv an online email discussion group.  But as far as I can see he has no knowledge of the discipline of sociology. . 

Dekker has written a blog piece that is a massive and uneducated attack on my reputation, and dare I say tinged with resentment and malice, for reasons I cannot understand. 

He is so ignorant of what sociologists do that he claims that I got my "ideas" from InLv

Not at all. 

Click to enlarge

I "got" my ideas from Disability Studies and the Social Constructionist Model of Disability 

What I got from InLv was just some of my data. 

Because InLv was far from the only group I belonged to. 

I was a member of several other Autism support groups,: Some international, some  Australian,  some online, some face to face: 

Online: 

I was a member of 

• InLv of course, as above. 
• the Leeds University Disability List, the pre-eminent international discussion group for academics and scholars in the Disability Studies field
• Ozautism, an Australian Support Group
• the  Women from Another Planet collective formed to publish a collection of essays by autistic women on their experiences. I wrote the preface to the collection. 
• and a few others whose name I have forgotten - this was 20+ years ago! 

I created 

• ASpar, an online international discussion group, for people raised by Autistic parents. 

In person:

I was 

• the secretary of Sydney and regions largest autism support group, the Inner West Autism and Aspergers Support Group
• an elected director of Shelter NSW the peak body for low income renters. both private and public housing, where I advocated for more research on the relationship between Autism, poverty and homelessness
• the instigator and then co-creator in 2003 of ASteen a social club for autistic teenagers which had around 200 members by the time I handed over the reigns when my daughter was out of her teen. I provided the parameters of the club, which were my insistence that we would be strictly about having fun - fortnightly weekend family outings to fun venues in sSydney and surrounds and camps, and absolutely NOT about trying to change our children. More than 20 years later, I see the club is still going strong! 

My perceptions of InLv

InLv was a support group where people shared narratives basically about sharing our experiences of growing up autistic. But what struck me about this group, was the lack of awareness of the extent to which disability can be socially constructed.  It was not surprising because the Social Model of Disability was not well known in those days, so I was fortunate in discovering Disability Studies in those days.  I believe I made some efforts to respond by adding some insights about the social construction of disability, but on the whole I was glad to be given the space to share my own experiences of exclusion and discrimination as an autist, and I did not wish to preach. 

I salute Martijn Dekker for making this group possible with his technical expertise. Because InLv was the largest of al these groups, and the one in which I participated most,  I decided to ask several members for permission to quote them in my post.  With their agreement, we also decided on aliases for them in work. All who I approached agreed. There was one individual who did wish to be identified, and I honoured that too. I cannot recall now whether they were InLv members or not. 

Please take care to read my line by line refutation of Dekkers calumnies on this blog at Confabulations or Lies? A Correction of Martijn Dekker''s False "Memories".

It is extraordinary that despite the combined intelligence that doctorates should surely confer on these 6 eminent scholars, they have somehow managed to suspend all disbelief at Dekkers clearly unscholarly opinions. Again, it is anyone's guess why they would stoop to this. 

The defamatory and easily-refuted falsehoods of this confederacy have had a huge impost on my time and well-being.While easily refuted with factual evidence, the process is immensely time-consuming, and has created ongoing damage to my health and well-being. 

This gang have managed to get their farrago of misinformation published by the esteemed academic journal Sage Publication. It has taken me months to refute their confabulated and cherry-picked allegations. 

Note that unlike this crew, I possess original documents, while they rely on internet scuttlebutt and their their own wilful imaginations. 

It is so much easier to make up a story than to meticulously refute it,  but it takes a massive effort to disprove it.  Because... 

I am just about finished with my line by line refutations, 

I have made a start on 2 refutations here:

Reflections on the Neurodiversity Paradigm: Sage Journals publish defamatory allegations by Chapman, Walker et al (neurodiversity2.blogspot.com)

Reflections on the Neurodiversity Paradigm: My Response to Martijn Dekker's Libels (neurodiversity2.blogspot.com)

How they display themselves versus the reality

 Draw your own conclusions

* A note on Steve Silberman

I am grateful for this article by Steve Silberman for bringing my work to wider attention. 

Sadly Silberman fell for the Transphobia Libel, disseminated it, and refused to discuss it with me. 

For that refusal, I am not feeling forgiving. I see it as evidence of underlying misogyny, a biased willingness to believe derogatory information from a sense of gay victimhood,  and unforgivable for an experienced journalist.