Monday, April 11, 2011

A repost of a riposte

Ever since I spoke publicly in October 2007 to challenge a posthumous "diagnosis" of Janet Frame as autistic, I have been hounded, publicly and privately, and around the internet, by a person or persons who are deeply offended by my stance. These people claim to be associated with the autism "community" and place me as an enemy of this community because I have refused to agree with their opinion that Janet Frame must have been on the autistic spectrum.

My opinion is actually informed by a thorough knowledge and understanding of the latest research on autism, but more importantly than that, it is based on a close personal association with Janet for 50 years, as well as an extremely good working familiarity with all of her published and much of her unpublished work. I happen to know that the person they are "diagnosing" has no resemblance to the real Janet.

My argument is not with autism itself.

My argument is with the description of Janet Frame that is used as the base for their posthumous diagnosis of Frame. It is patently wrong.  Their delusions about Frame include such especially outrageously incorrect claims such as that she had "extreme difficulty with most social interactions" (Dr Sarah Abrahamson, speaker slide, Victoria Autism Conference 2010).

There is a host of possible evidence from a multitude of sources including Frame's autobiography, the biography about her, and even her whole oeuvre of literary work taken in context, that this myth of Janet Frame is not just an exaggeration or a matter of scale; it's completely off-track. Numerous people who knew Frame have put on record her extraordinary verbal and communicative facilities, and her ability to relate with ease to anyone from the Prime Minister to the Queen of England to the family next door, from gang members to the artistic elites of New York.

The evidence they cite for Frame's 'social and communicative disability' is taken largely from Frame's fiction, and also from selective readings and misreadings of her memoir, which in itself was a selective document in which Frame told her story, not the story of her relationships, because she didn't want to intrude into the privacy of those who were close to her.

They do not know or describe the real Janet Frame, so how can they possibly diagnose her?

The caricature they describe is based on hearsay, provincial ignorance, malicious gossip, cultural myths, a fictional portrayal, and a poor understanding of the literary genres Frame employed. And it suffers from vast omissions of all the counter evidence to a diagnosis of autism.

I have sustained the most vicious and unkind personal attacks on me from people who seem to think that because I am "in denial" as they term it, about my aunt, that I must have a poor opinion of anyone who is on the mild end of the autism spectrum. According to them, that can be the only reason I do not agree with them. They have drawn a portrait of me as an autism hater.

I am nothing of the sort, and I sincerely hope that this is obvious to any reasonable observer. But the defamatory attacks on me continue to this day.

Almost anywhere there is mention of me or Janet Frame on the net, these internet "trolls" come in with derogatory and defamatory comments about me specifically in an obvious attempt to discredit me. I have tried to ignore it and to "rise above" but the trouble is, this sort of mud sticks.

I have never said anything disparaging of any autistic person, no matter what end of the spectrum, and I have known many people who genuinely fall along that spectrum, from one end to the other. But I am often quoted by my attackers as saying that the only reason I don't like the autism diagnosis of Frame is because I am supposed to take it as some sort of "slur" on her character.

If she had been autistic, I would not see it as a slur. I don't think it is a slur on anyone to say that they have any degree of autism. The reason I speak up against a false diagnosis of my aunt, is because I prefer the truth, and their diagnosis is based on a whole bunch of lies.

The suggestion that Janet may have had high functioning autism is a satisfying one to those who believe the myths about her, but I can't help preferring to point out that the person the diagnosis-hounds think they are talking about just did not exist. But they want their poster child and they don't care who they will slander and try to destroy in order to secure their cultural property.

Because it is known that my daughter has classic autism, my detractors claim - repeatedly, although I try to explain that they are wrong - that I must just ignorantly not realise there are two ends of the spectrum. They patronisingly tell me, over and over, and say of me, that high functioning autism manifests differently to 'classic' autism.. They think I confuse HFA with the severe type that they believe my daughter to have.

I do not have a negative opinion of any kind of position on the autism spectrum - not of one end or the other. Some of my detractors apparently have a low opinion of those who like my daughter are located nearer the severe end. They seem to have a horror of any association of autism spectrum disorder with "retardation" or even of 'mental illness". They put words into my mouth and then slander me for their own terror of any possible "dark side" to an autism diagnosis.

They seem to be the ones who fear any association of high functioning autism or Aspergers with intellectual disability or mental illness! In fact they seem to be the ones with a deep disrespect: for people with mental illness and severe autism.

Perhaps they are are afraid they will be given these labels themselves? In fact they seem to be shopping around for the coolest geeky label they can find, and "genius-autist" is the label du jour.

I've had to put up with abusive emails and texts, with toxic poison pen emails and vicious blog comments including those casting aspersions on my own love for my daughter and even cruelly suggesting that I might be ashamed of her.

It's incredible to me that anyone who claims to speak for the "autism community" should so horrifically attack a mother who has supported and loved a family member with autism for nearly 40 years, but there you go.

And in attacking me, these so-called "autism advocates" are attacking someone who, for many years before autism was a well-known condition, advocated for human rights for people with autism and belonged to and served in a voluntary capacity in organisations publicising autism. And I also was studying issues of communication in people with autism less than ten years ago, when I was enrolled for a PhD in linguistics. Yet these people say of me, "she must have issues with accepting her own daughter's autism and that's why she rejects the truth about her aunt".

Generally I just delete the toxic attacks but not until I have saved them and saved the IP information identifying where the person was when they posted the comment to the internet. In case I ever decide to sue these people to try to stop the slanders once and for all. I do have plenty of evidence, including facebook posts and radio interviews, and the libellous messages these people send to my associates and family members, signing their own names.

The below "anonymous" comment was made on a blog post I wrote in September 2008. The blog post was about the fact that Frame was a lone twin: her twin died in utero:

http://slightlyframous.blogspot.com/2008/09/longing-to-belong.html

Here's the anonymous comment that was made:

"Mrs. Gordon - noone agrees with you on this, except perhaps for a few people with no idea about autism and some autists in denial. Any of us with autism will know she exactly describes the mental state in so many of her books, especially the ones which are definite autobiographies or very thinly veiled, and the biography. I don't think you know how little most respect your opinion on this, how most people who meet you think you are a stuck-up bitch with a very boring public speaking style, and how much of a laughing stock you are among people with some idea about autism. You don't even have any friends or colleagues who can be bothered posting any comments supporting you (maybe you need to make some up?) And by the way noone is fulled by your A Customer Amazon posts: can't you even try to sound like a normal person not a literary wanker? And the biography clearly documents your daughter has a severe mental retardation issue, not just autism, so that doesn't really make you an expert on that, apparently. JF said herself anyway that despite this she could identify with her! Have a good hard look at yourself woman. Little hope of this I know but whatever, you've annoyed and offended lots of good people, and the autism community, without it appears feeling any "empathy". Maybe you should just try even meeting one or 2 non-retarded autistic people, but oh no, Pamela knows everything.

Love an autistic non-fan"

Tracking software indicates the above comment originated from Victoria in Australia from a medical server humenet.com.au.

I did compose a reply that went more or less like this:

Dear "Anonymous",

I have to concede that my speaking style isn't scintillating; I have never felt that the role of literary executor really called for a high level of entertaining delivery. Believe it or not, I'm not doing this extremely challenging job for my own personal glory. I'm here because of the loving personal relationship I had with my aunt, and out of a sense of duty to her hugely important literary legacy. And because she asked me to do it. She knew I had the qualifications, including a post graduate degree.

Sorry but I don't know what you're talking about with the Amazon comments, I have never in my life posted anything on Amazon or any of the other places I'm accused of posting. This blog of mine is where I have my say. It sounds like you've encountered a genuine "literary wanker".

Or, perhaps, as has happened several times on Wikipedia, somebody has impersonated me just for the purpose of attacking me, because they have been unable to cope with my silence there.

And the reason my friends and colleagues and other experts don't "rally to my defence" is not because I don't have support - it's because your position and your methods, are beneath contempt and do not warrant their effort or even their comment. And because they think I'm doing a good job anyway.

Oh and by the way, if you want to be an effective health advocate, it might be a good idea not to call somebody with an intellectual disability "retarded" - that's incredibly insulting.

Pamela

Posting my response just led to a further stream of abusive comments and I became tired of the negativity and just took it all off line.

But I don't like the idea of being bullied into silence by these stalkers, so here is the material again, for the record.

I would just like to add,

Dear 'Anonymous',

I feel I know you well enough by now to hazard a possible diagnoisis for you. I know you have access to the DSM-IV list of all the disorders so please look it up. I seriously hope you will get help for what seems to be a classic case of 'borderline personality disorder'. If you had some reliable professional counselling and the appropriate medications, you would feel so much better about yourself and other people, and feel strong enough to take some responsibility for your own problems instead of blaming other people, and learn to build some bridges instead of dynamiting them.

Pamela

2 comments:

Ross Brighton said...

Pamela - so, so much love for this.
I cannot begin to express my extreme worry about the unethicial and deeply worrying practice of posthumous literary diagnosis. Anyone who has had any connection with psychiatry or any other form of treatment should be aware of the dangers of misdiagnosis, (about which I know from experience), and how this happens when you're in the same room as the clinician, and talk to them... To think that one can impose a diagnosis on someone who can not only not speak for themselves, but is no longer with us, purely on the basis of artistic work that is in no way of a clinical nature, is unconscionable. To do so to someone who had such a frought and terrible relationship with the psychiatric establishment is even worse. No one has the right to impose themselves on someone else, let alone someone they have never met.
The "genius-autist" trope that you mention is yet another example of the incredibly damaging concept of the "mad genius", generally epitomised by certain romantics, or characters like the mythic construction of Sylvia Plath (which bears little resemblance to the Sylvia one finds if you actually look at her, rather than the spectral construct) - unfortunately in New Zealand Frame seems to be the main target for appropriation. I find this trend incredibly worrying, as it leads not only to the mystification of mental illness (or non-neurotypicality), but also the creation of a mythic figure that serves as a barrier between the reader and the author, a filter that colours any interaction with their work, something incredibly difficult to get through - the type of persona constructed by people like James K Baxter or Allan Ginsberg - often I think as a means of asserting control over the way that they were read. This doesn't work for Frame, and should not be attempted - it would be nothing more than the imposition of someone elses ego onto her work.
Furthermore, and perhaps more importantly, the conception of mental illness, autism, or non-neurotypicality that is generally used by such people is far from clinical. It tends to be either a generalisation of their own experience, or some kind of romantic ideal, and does a disservice both to those others who live with the condition in question, and the writer/artist - this ties in with what you were saying about your detractors' attitudes toward those on the more severe end of the spectrum. It reminds me of a seminar I attended recently where they were using Lacan to talk about madness and writing, and seemed completely oblivious to the possibility that psychosis could be a horrible or traumatic experience.
essentially what I think I'm saying is that this kinf of behavour not only alienates, but also erases large aspects of the real human in a writer. By appropriating a figure to your cause, they become a symbol with your words in their mouth - and such ventriloquism is a deeply unfair thing to do.
Disclosure - I am a writer who suffers from mental illness, and who is a strong advocate of other writers who promote/demonstrate different ways of thinking about/experiencing the world. I am also soon to be assessed for ASD. So I'm not a hater.

Pamela Gordon said...

Beautiful and important post, Ross, thank you.