davidgillon | SF/F, Erased by the Head Puppy!

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.

Current Mood: Incandescent
Current Location: Thwapping Puppies with a rolled-up newspaper (rolled around a crutch, that is)

Flat | Top-Level Comments Only

From:

recessional

From network: fwiw from merely being an observer all through last year's Mess, that is exactly the response I would have expected from Torgerson.

From:

lilysea

I have mixed feelings about the cure narrative.

As someone with chronic fatigue syndrome (among other things) which causes severe mental exhaustion, difficulty concentrating, aphasia/loss of words, difficulty reading, difficulty with auditory processing if there's background noise, chronic pain, sleep difficulties etc etc, I totally want a cure. I want to go back to all the things I could do before I got so ill. I also want to live without the fear of my illness (and level of disability) getting worse - CFS often severely and permanently deteriorates if you over-exert yourself.

But in the meantime, my powerchair makes my life so much easier and better than it would be without a powerchair.

But I want a cure because I'm sick/ill in addition to being disabled. Or, to put it another way, my particular disability arises out of my illness.

I can totally see that someone who is disabled *without* being sick/ill e.g. neuroatypical, Blind, Deaf, spinal injury, amputee, would find the cure narrative extremely offensive and smacking of erasure (and hints of eugenics.)

I'm now wishing I could find the essay I read a few months ago about the tensions in Disability activism between disabled people who are sick eg Chronic fatigue, MS, Parkinson's,

vs disabled people who are healthy e.g. neuroatypical, Blind, Deaf, spinal injury, amputee.

From:

davidgillon

Oh, absolutely there are valid arguments both ways. I have a mild preference for a cure for my chronic pain, but not to the point of sacrificing all else for it. I'm on record as saying I would rather do without any pain control at all than use gabapentin again, and gabapentin worked, it was just the neuro-fog I couldn't stand. And I'd quite like less anxiety.

But the chair I don't mind, and the neurodiversity is what makes me me!

From:

lilysea

Yes, if I could fix just one of my symptoms it would be the brain fog / mental exhaustion / difficulty concentrating. Some of that comes from meds, but most of it comes from chronic fatigue / fibromyalgia / Lyme etc etc.

I'm gradually weaning myself off Lyrica/pregabalin (which is closely related to gabapentin) because I found the brain side effects intolerable. On less Lyrica, I can watch TV again! and read books again! and listen to audio books again!

looking forward to getting of it completely, but it's a long slow torturous process.

From:

shehasathree

Is it Susan Wendell's "Unhealthy Disabled"?
If I was in the conversation at any point, it was probably that.

From:

jesse_the_k

Oooh, thanks for that reference--now to find it.

Her book The Rejected Body (1996) was crucial for understanding myself and the world through the disability lens. Long out of print, it's finally available as an ePub on Kobo & B&N, and Kindle on Amazon.

From:

shehasathree

I can email you a copy, if you like.
I haven't looked for a while, but there are probably still second-hand copies floating around for non-ridiculous prices on the internet, too. *g*

From:

jesse_the_k

Thanks for the offer. I loved it so well I bought two copies way back then––one for borrowing, another to keep. Managed to hold on to the keeper.

From:

capri0mni

I'm someone who, like

davidgillon, has a life-long condition that does not cause pain or illness.

But, even though I have no desire for a cure, I understand the desire to recover an identity which has been lost to Disability -- especially if that previous life was free of pain and exhaustion.

I think (I hope) that both sides of the disability divide can come to an agreement about the harm of the "Cure Narrative" in our society as it exists, now, though, because that narrative makes the disabled individual out to be a burden to society, and that they must therefore be cured (of their outward differences) before they're allowed to participate in society.

Yes, you want a cure. And you deserve a cure (or at least, if you can't get all the way back to your life before your illness, effective treatment that makes life comfortable).

In the meantime, while working on that cure/treatment, you also deserve to have people look you in the eye and accept you as a fully human human being right now, and respect you as an adult who's capable of making her own decisions on which avenues toward cure you wish to pursue.

This is what I call the "Diversity Narrative;" it includes the search for cures as part of its vision. But the "Cure Narrative" does not include Diversity.

Edited (fixed grammar) Date: 2016-02-28 12:55 pm (UTC)

From:

davidgillon

Just want to clarify that pain, via Chronic Pain Syndrome and dodgy joints, together with associated fatigue is something I deal with.

As for the rest of that, wow, fantastic point! I'm perfectly fine with some disabled people wanting a cure (especially for the ultimately fatal disabilities/illnesses!), but it isn't unreasonable to expect the same recognition for not wanting one. And your point then takes that further when it focuses on cures as a jam tomorrow argument, and demands respect today.

From:

capri0mni

it focuses on cures as a jam tomorrow argument

*Nod*

The biggest problem I have with the Transhumanist movement as I've encountered it,* is that it tries to gain public support for pursuing a technological fix for mortality by arguing that: "Once we eliminate the problems of disability and aging, society will be free to achieve perfect peace and harmony."

To which I respond: "So, in other words, you want to eliminate the disabled, because we're getting in the way of a perfect society?"

"We don't want to eliminate the disabled, we just want to cure all disabilities, and make it so your life is not so sad and miserable, because you are broken."

"I'm not sad."

"But you're broken."

"I'm really not... Look, why don't we work on peace and social justice now, because it's easier to work on those cures you want in a peaceful and just world?"

"There's too much inequality for that! Because there are so many broken people!"

"Maybe that's because you refuse to accept that I might, in fact, be your equal as I am? Is that why you want to get rid of people like me?"

"Stop talking like we're a bunch of Fascists! Can't you see, we're your saviors?"

"Goodbye."
---

Meanwhile, I'd love to organize a charity marathon to raise money and awareness to keep curb cuts and and public transportation, instead of raising money for specific conditions...

*(I haven't actually sat down to read any published tracts of transhumanist philosophy, but I've had online conversations with people who self-identify as members of the movement, as paraphrased above).