Otter's Rock

Lots of people in fandom are aware of the Social Model of Disability, which is a direct contrast to the Medical Model of Disability. Problem is, most of those people only understand half of the Social Model.

If you don't know what I'm talking about, the "in a nutshell" version is that the medical model views disability as something that is broken and which needs to be fixed, and little or no consideration is given beyond trying to cure it (and little or no consideration is given to the needs and wishes of the person who has it). The social model of disability, on the other hand, says that the thing that disables a person is the way society treats them. So, for example, if someone is paralyzed and can't walk, what disables them from going places is buildings that are not wheelchair accessible. (Or possibly not being able to afford the right type of wheelchair.) Inaccessible spaces and support equipment you can't afford are choices society makes, not a problem with the disabled person.

People then take this to mean that the only problem with disability is the society that surrounds it, and therefore in some utopian future where capitalism is no more and neither is ableism or any other form of bigotry, all problems disabled people have will be solved.

Except that what I've just described is not actually what the social model of disability says. Or, rather, it's only half of what the social model of disability says.

The actual social model of disability begins with a distinction between impairments and disabilities. Impairments are parts of the body/brain that are nonstandard: for example, ears that do not hear (deafness), organs that don't work right (e.g. diabetes), limbs that don't work (paralysis), brain chemistry that causes distress (e.g. anxiety, depression), the list goes on. The impairment may or may not cause distress to the person who has it, depending on the type of impairment (how much pain it causes, etc.) and whether it's a lifelong thing they accept as part of themselves or something newly acquired that radically changes their life and prevents them from doing things they want to do.

And then you have the things that disable us, which are the social factors like "is there an accessible entrance," as described above.

If we ever do get a utopian world where everyone with a disability gets the support they need and all of society is designed to include people with disabilities, that doesn't mean the impairments go away. Life would be so much better for people with impairments, and it's worth working towards, but some impairments simply suck and would continue to suck no matter what.

Take my autism. A world where autism was accepted and supported would make my life so much easier ... and yet even then, my trouble sleeping and my tendency to hyperfixate on things that trigger my anxiety would still make my life worse. I don't want to be cured of my autism! That would change who I am on a fundamental level, and I like myself. My dream is not of a world where I am not autistic, but a world in which I am not penalized for being autistic and have the help I need. And even in that world, my autism will still sometimes cause me distress.

There are some impairments--conditions that come with chronic pain, chronic fatigue, etc.--where pretty much everyone with that impairment agrees that the ultimate goal is a cure. But nobody knows how long a cure will take to find (years? decades? centuries?), whereas focusing on the social things disabling you can lead to improvement in your daily life right now.

In conclusion: the social model of disability is very valuable, and much superior to the medical model on a number of levels. But please don't forget that the social model makes a distinction between disability and impairments, and even if we reach every goal and get rid of all the social factors that disable people, some impairments will be fine and cause no distress to the people who have them, some will be a mixed bag, and some will still be major problems for the people who have them.


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Every year, Uncanny Magazine does a special "Destroy Science Fiction!" issue. (Women Destroy Science Fiction! Queers Destroy Science Fiction! People of Color Destroy Science Fiction!") This year, it's "Disabled People Destroy Science Fiction!"

The issue itself isn't out yet, but many of the personal essays about disability and science fiction are available for free on the Kickstarter page. They're all good, and you should totally check them out.  Here are some of my faves:

K.C. Alexander, We Are Not Your Backstories:

Science fiction shapes generations—how we think, the way we act. It influences the careers we choose and our thirst for knowledge. It cautions against the worst of our impulses, and quietly teaches us empathy. Without knowing it, we are slowly acclimated to people and beliefs that live outside our rigid monocultures.

A.T. Greenblatt, The Stories We Find Ourselves In:

So, I'll let you in on a secret, the thing I've learned about having a life-long disability, the thing that lots of stories never quite grasp: The real trick, the true solution to a disability, is to find a balance between your abilities and your goals.

Michael Merriam, We Are Not Daredevil. Except When We Are Daredevil:

I live in this world. I can't toss my white cane aside when I need to spring into action: the cane goes with me everywhere. I travel around my city on public transportation. My other senses are not supernaturally sharper because I am blind. I simply pay better attention to those other senses. It's a learned skill. I live within my blindness every day, and I want to read about fictional characters who also live with and within their blindness.

 

Marissa Lingen, Malfunctioning Space Stations:

I have a major balance disorder. When I am awake and able to use all my senses, I can reason out the vertical. If you make me close my eyes, I can still get it to within about five degrees of the correct answer if I'm sitting still on a firm surface. If I’ve got a squishy surface, motion, or other things confusing my senses, doubtful. Asleep? All bets are off. I literally do not know which way is up.

Since I have read and written science fiction for decades, what my sleeping brain knows to do with this much disorientation is to process it into a malfunctioning space station. And so I dream. Occasionally my dreams veer into carnival rides, roller coasters, giant swooping swings. But that is someone else's genre. This is mine.

H. Ace Ratcliff, Nihil de Nobis, Sine Nobis:

I narrowly avoided the temptation to throw my Kindle and watch the book shatter into a million plastic pieces. If it had been a printed paperback, I’m positive I would be able to show you the dent in the wall. “For the record,” I tweeted out to the hashtags The Expanse was using, “you can be a fucking Valkyrie in a goddamn wheelchair.” I can assure you that any human with the wherewithal, sheer willpower, and pain tolerance to put her skeleton back into place on an hourly basis absolutely deserves a place in any mythological pantheon.

Day Al-Mohamed, The Stories We Tell and the Amazon Experiment:

As an example, I once asked a room full of authors what their response would be if I asked them to make the protagonist in their current Work-in-Progress a woman – most nodded, yesses were heard around the room. Then I asked if they could make their character a person of color – again, nods around the room. Then I asked if they would make the character disabled – silence. The discomfort was palpable. In theory diversity and disability was great to include in fiction but when it came to implementation, they couldn’t easily connect disability with their protagonist. They had trouble adjusting to the practical reality of disability existing outside of the boxes they knew. This is why 134 stories on Amazon could be broken down into five story categories.

Ada Hoffman, Everything Is True: A Non-Neurotypical Experience with Fiction:

When I read #ownvoices autistic characters, I often think the authors have had that same feeling. Many of these characters have devoted family, friends, romantic partners, even when the world at large is awful to them. Most of them first have to overcome a broken relationship with themselves. To learn to believe that they're worthy as they are.

With autistic characters written by NT authors, it often feels like everyone is tired of their shit from the start.

You don't have to be tough. People sometimes say things like, "If you can be discouraged from writing, you should be," and use that as a way to justify being unkind to people who are tender. I don't think it's meant as a cudgel against disabled people specifically, but it can function as one. If you doubt your abilities, if you are sometimes crushed, if you feel like an impostor—that's fine. It's normal. If only tough people wrote stories, then we'd only have their perspectives, and we would lose all the things other people—you—have to offer.

Haddayr Copley-Woods, Move Like You're From Thra, My People:

I was glad I didn’t have this unfortunate internalized disableism stilling my movements, but I didn’t know why I’d found it so easy to make the switch until I sat down with my little boys to watch The Dark Crystal, which I hadn’t watched in decades.

I didn’t know. It took my breath away. The reason why I am fine with moving like this, the reason I am fine with people staring and why I love myself this way, is because of The Dark Crystal.

 

The issue is more than fully funded, right now they're adding content left and right as more people pledge, and if they get to $45k (they're at $39,425 with 9 days left to go) they'll do a hardcopy of it for supporters pledging $50 or more.