davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
 Good interview in the Guardian with Judy Singer on how she created the term neurodiversity. Slightly stunned that it was a consciously political creation from the word go - she was explicitly referencing the American Civil Rights movement with the 'diversity',  and that she did it in her _undergraduate_ thesis. And it's a very Social Model of Disability construction.

"As a word, ‘neurodiversity’ describes the whole of humanity. But the neurodiversity movement is a political movement for people who want their human rights."

The mother of neurodiversity: how Judy Singer changed the world
davidgillon: Dina Meyer as Oracle, sitting a manual chair in front of a clock face (Wheelchair)

There's a thread trying to analyse where the Sad Puppies and the rest of SF/F fandom stand over here. I've been kibbitzing around the edge of it for a couple of days, because I've always thought the Puppies were likely to be problematical when it came to pushing for disability equality in SF/F, and particularly for getting rid of cure narratives. I just didn't realise how much of a problem.

Yesterday I picked up a particular point in the Puppy spokesperson's opening statement, because it seemed to be especially problematical for harassment and access policies, outlined how I thought it was an issue for me as a disabled person, and asked her to clarify if I was interpreting her position correctly and if that was part of the Puppy platform.

She hasn't replied. But Brad Torgerson, the whole Puppy movement's leader, has. And oh boy do I have a problem with what he says!

You can read the full thread at the link above, but I'm excerpting my point, the disability part of Torgerson's reply (for an Army CWO he's got a good line in bleating victimhood I don't need to recycle), and my reply.


Me: Hi, Stephanie S

I'm interested in your statement in the original post around "non-falsifiable accusations of racism/sexism/homophobia/etc." When most of the SF/F that addresses disability wants to cure me of being me, I'm sure you can see how the way I'm addressed might be important to me. I've been insulted in the street too many times for being disabled in public, but it's the calls to eradicate people like me that really hurt, and the only place I see them being treated as a positive representation of disabled people is in SF/F, in response to stories with a cure narrative.

It really doesn't take much research to find that whole hordes of disabled people are actively opposed to the idea that we want to be cured (and it's worse cousin that it should be imposed on us, a view that actually made it into the Conservative Manifesto in the recent UK election). Deaf, Neurodiverse*, followers of the Social Model of Disability, many born-disabled, we all find the cure narrative hostile to us, for many of us it isn't tantamount to hate speech, it is hate speech. And if it's hate speech, then clearly it's ableism.

*Autism seems to be a particular draw for cure narratives, particularly problematical given both the vociferous opposition to calls for a cure from autistic self-advocates and the attempts to deny autistic people a voice of their own by people claiming to speak for them (full disclosure: I'm certainly Neurodiverse and have been told by a psychologist I'm likely somewhere in the vicinity of the Autism Spectrum).

But that's not a widely held view among non-disabled people (see not bothering to do the research). So that brings us back to "non-falsifiable accusations of racism/sexism/homophobia/etc." If I say that a story that calls for curing people of being autistic (which David Weber did in one of the more recent Honor Harrington books, even claiming it as evidence of the good guys superior medical ethics) is not just problematic, but is engaged in ableism and hate speech (even if inadvertent) then isn't that an example of the 'non-falsifiable' claims you say are a problem?

I've quoted it elsewhere here already, but UK law enforcement works on a hate speech/hate incident/hate crime definition that foregrounds the perception of the victim:
"A hate incident is:‘Any non-crime incident which is perceived by the victim or any other person, as being motivated by hostility or prejudice based on a person’s age, disability, gender identity, race, religion / belief or sexual orientation’"

When I'm attacked for being me, I'm the only person who can tell you how much damage it did to me. Anyone who tries to tell me whether it did or did not damage me is treating me as a child, who doesn't know their own experience (and being treated as a child is a particularly problematical form of disability hate categorised under the name infantilisation).

In talking about 'non-falsifiable' incidents of hate speech, are you actually saying we as individual victims don't get to say if we are victims or not? And are you saying that is part of the Puppy platform?

Torgerson:

Disability is not an identity. Nor is it a lifestyle. Disability is a predicament. Ask any disabled veteran if (s)he'd prefer going back to life prior to the bullet/bomb/accident, and you'll get a resounding, "YES!" I've written about people with disabilities. The main character of my award-winning novelette "Outbound" is a paraplegic who finds his skills advantageous in a zero-gee environment. Of course, when technology gives him the use of his legs (something he's never had before in his whole life) he takes it all in stride. Pun thoroughly intended. Again, disability is not an identity, and it is not a lifestyle. It's a predicament. That doesn't shame or diminish the disabled. It recognizes the truth of their existence. A compassionate society can still be compassionate, without losing sight of the gravity of the actual situation. This is why whole medical industries remain mobilized to find solutions to various disabilities, both physical and mental.

Me:
Wow, the arch-Puppy himself. I'm honoured. Actually, no I'm not, because your point erases the preferences of huge numbers of disabled people.

I identify as a disabled person, as a disability rights activist, as a repeated victim of disability hate speech, disability hate incidents, and yes, disability hate crimes. Who are you to tell me disability is not an identity?

"Disability is a predicament." Nope, I'm Neurodiverse, I'm quite sure being me is not a predicament. And the Neurodiversity movement as a whole is adamant you don't get to call it a predicament. It's who we are.

I'm also a wheelchair user, pretty sure that's not a predicament either. I had a huge grin on my face this afternoon because the new chair's so much better. Better than the old one, better than walking. Now not every disabled person is going to agree with that. But ask them which they prefer, no chair, or a chair? Wheelchairs are incredibly liberating, but the normie population, who can't be arsed to do the research to see what we actually think, persist in thinking a wheelchair is a tragedy. The disability that leads to you being a wheelchair user may, or may not, be something you consider a negative, the chair itself is a positive on top of that.

"disability is not an identity, and it is not a lifestyle. It's a predicament. That doesn't shame or diminish the disabled. It recognizes the truth of their existence."

Contemptuous much? You get to judge what our existence is worth, we don't? Ask the Neurodiverse community, ask the Deaf Community, ask any follower of the Social Model of Disability, ask many born-disabled people, all of whom consider their disability a fundamental part of their identity and in no way a negative, nor 'a predicament'. And before you do that, go away and review what I said upthread about infantilisation as a particularly pernicious form of disability hate that denies disabled people the right to be treated as adults with our own opinions, and our own identity.

"A compassionate society can still be compassionate, without losing sight of the gravity of the actual situation"

I don't want your compassion. I want you to look me in the eye and tell me you accept me as your equal just the way I am, and that you accept my right to identify myself any way I damned well please.

And do the damned research! Huge swathes of disabled people consider disability to be a core and inseparable part of their identity and want no part of any cure. It's not even as if it hasn't been all over fandom in the past month with the SF Signal/Amy Sterling Casil/"We Are All Disabled" fiasco!


Wow! Just wow. I don't know if he took umbrage for me taking on cure narratives seeing as he admits above to having written one, or if he has a particular problem with people who don't accept disability as some kind of victimhood, or if I'm running into some odd corner of his LDS theology, or what.

But what I do know is that he doesn't get to indulge himself in infantilising me by telling me that my disability is not my identity, and then to victimise me.

I'll undoubtedly blog about it when it's had time to sink in, but for now, colour me furious and flabbergasted.

davidgillon: Text: I really don't think you should put your hand inside the manticore, you don't know where it's been. (Don't put your hand inside the manticore)
 My problems with anxiety seem to have finally passed the threshold at which I'm more anxious about not doing something, than I am about doing something about them - the final straw being that I'm finding it impossible to send out submissions of the #Pitchwars novel to agents, or even effectively research them.

So I've got a doctor's appointment booked for tomorrow, at which the intention was to raise this and say I need help, but unfortunately I think I'm going to have to use it for something else (I've picked  up a physical infection that isn't getting any better, plus we're supposed to be doing a drug review) but I'll mention what my intention was and arrange a further appointment.

So the intention is to talk about the anxiety and:
Emphasise that I think it's secondary to being neurodiverse - and that may be a discussion all on its own as I don't think they realise I am.
That I think it's gotten worse post bullying by Evil Aerospace / Atos / DWP and constantly being on trial for being disabled.
That it's stopping me applying for benefits I should be entitled to/following up on things like wheelchair assessments the surgery have asked me to do, renewing Blue Badge etc.
That trying to deal with finances is causing panic attacks
That I'm catastrophizing over pretty much everything.
And so on.

I'm mostly thinking aloud here, both to organise myself and make it more difficult to back out, but if anyone has any thoughts on things that should be mentioned under ' and so on', or on strategies to take or avoid, then chiming in would be very welcome.
davidgillon: Text: You can take a heroic last stand against the forces of darkness. Or you can not die. It's entirely up to you" (Heroic Last Stand)
I was out for lunch with friends yesterday at our normal Saturday place. Which was good, I hadn't seen two of them in a couple of months. But then the place starrted to fill up, with Santas. There was a Santa fun run in aid of some charity or other in town yesterday, so there were hordes of people in Santa costumes, hyper from having just run, coming into the bar. And of course they then added beer or wine to the hyperness and the noise levels started to climb.

It isn't the first time I've started to feel uncomfortable from sheer noise levels in there, but it's the first time it's progressed far enough for my friends to notice and ask if I'm all right. I brushed it off as being tired, and fortunately it quietened down a bit, but if I'd been there on my own I couldn't have stayed. Having helped someone log this stuff for a PIP application just recently I was probably in a better position to analyse what was happening, and as far as I can tell it really was classic neurdiverse sensory overload, and specifically people talking that was the trigger. I wouldn't have enjoyed background music at the same level, but I don't think I would have been quite so freaked out by it. Sometimes you need that external perspective to understand what's happening to you.

Not much I can do about it, but hopefullly I'll have a better understanding of what's going on when it happens again.
davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
I'm not convinced this does what it says on the tin, it's mostly a badly written (just what the hell is an 'official detailed working screener document'?), poorly structured listing of every symptom ever even peripherally linked with the Autism Spectrum (and some not - 'Possesses psychic powers' Seriously?) the overwhelming majority of which I found just as applicable to me as a male who's been told he's probably somewhere in the AS area. But it's trying, and as the female Aspie friend who flagged it up pointed out, that alone makes it almost revolutionary.

Possible trigger/annoyance warning: It does talk about gender dysphoria in relationship to AS, it also talks about 'experimenting' with gender and sexual orientation to 'try and fit in', the overall effect seems to be slightly dismissive of gender dysphoria, reducing it to a symptom/coping mechanism in a way that made me uncomfortable even as a cis reader.

(Having panned it, I should admit it did make me realise I do have some stimming-type behaviours I hadn't previously considered as potentially symptomatic). 
davidgillon: A foot, mine, in a camwalker brace (Boot)
I had lunch with a friend who had seen my mention on FB of doing the Living with HMS/EDS thing for DiversifYA, and in the course of chatting about it mentioned the fellow bendies I'd met at Worldcon. That got us talking about the fact all of us weren't just bendy, but neurodiverse* even though there's no documented link and she made an interesting point (well I thought it was interesting anyway).
 
She'd asked me how common HMS/EDS is, I'm not sure what the figure for HMS, but I've seen 1 in 2500 to one in 5000 suggested as the incidence for EDS, which on a UK population of 60 million suggests around 12-24,000 UK bendies. My friend has Post Polio, and commented the UK Post Polio population is about 120,000, so 5 to 10 times the size of the EDS population (this surprised me, I'd have guessed the two populations at about the same), and just as with EDS, the Post Polio peeps suspect there are a bunch of co-morbid conditions, but even with the much larger patient population no one has actually sat down to confirm the links. So if it hasn't happened with PPS, maybe it's no surprise it hasn't happened with EDS.

* And those are by no means all the neurodiverse bendies I know, I'm actually struggling to think of any bendies I know who aren't neurodiverse, and most of those are queer too...

In other bendy news, wearing an AFO seems to work just as well as the Camwalker in managing my ankle, which is randomly unhappy again, and with the bonus of not inducing a two or three inch leg-length discrepancy, which makes my pelvis happy...

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davidgillon: A pair of crutches, hanging from coat hooks, reflected in a mirror (Default)
David Gillon

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