sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
(I left this as a comment on facebook)
Thinking this through, I think these "standing wheelchairs" are less about the "health" or "independence" of disabled people, and more about making disabled people conform to non-disabled standard, to make us more acceptable to non-disabled society. If a few individuals get benefit from them, OK. But they are not part of the social justice model of disability.

Instead:
Imagine altering the built and social environments so that wheelchairs are normal. No one comments on them in hostile ways. There are ramps and elevators aplenty. Everything is reachable from wheelchair height, or if not, someone is around who can help reach, or there is assistive tech for helping with that. This would be probably cheaper than providing these "standing wheelchairs" and benefit many more people, including kids, people with fatiguing illnesses, short people, etc.

An apology

May. 31st, 2016 04:51 pm
sasha_feather: the back of furiosa's head (furiosa: back of head)
At opening ceremonies I attempted to give an "elevator talk" (2 to 3 minutes) describing the social model of disability.

The metaphor I used was eye glasses and contact lenses: many of us wear corrective lenses and do not consider them to be a marker of disability. While impairment exists in my vision, my eyesight is not disabling because society does not make it so. It is relatively easy to acquire corrective lenses in most cases, because both brick-and-mortar stores and online stores supply them, and because doctors and community members encourage you to use them. There is wide support for these pieces of assistive tech in the society I live in, and they are mostly non-stigmatized, with some exceptions such as very thick lenses.

I contrasted corrective lenses to wheelchairs, which are highly stigmatized. Doctors and community members will generally not encourage you to use them; they are expensive and difficult to acquire; difficult to fix when broken; and infrastructure in our society does not support them, unlike corrective lenses.

A WisCon member pointed out to me later that I missed an intersection having to do with race: Glasses are designed for white people. People with flatter features (for instance some Asian people) can have a lot of trouble getting glasses that fit correctly, as glasses tend to rest on a prominent nose.

I completely missed this intersection of oppression and I apologize for causing pain. I will be more mindful in the future.
sasha_feather: the back of furiosa's head (furiosa: back of head)
Last week [personal profile] jesse_the_k and I went out shopping to a store we like where we know a number of the staff members. Jesse took her walker rather than wheelchair, principally because it is easier for me to drive and load the walker in my car, than it is to load the wheelchair into the minivan.

One thing that happened as we were leaving the store is the staff person said to Jesse, "It's nice to see you up," as in upright, not using the wheelchair.

This is a microaggression.

First, the assumption that an acquaintance or even stranger has the right to comment on your assistive tech, on your presumed health status, on your body-- that you would even want to know what some stranger thinks. But people do this all the time and they think it's a good thing. They think it's welcome praise, that is a nice fuzzy compliment.

They think it's praise because they value being upright and walking over using a wheelchair, even though it is a value-neutral distinction. It may be better for you and your self-care to use to the wheelchair, but hardly anyone will praise you for that. You should use what will work best for you, cause you the least pain, not what society values.

They think it's praise because they think it's an improvement in health status. This demonstrates an incomplete and failed knowledge of chronic illness, mobility impairments, and assistive tech. Many people who use assistive tech use that tech occasionally or periodically, and again, it is value-neutral to do so. Diseases get worse and they get incompletely better. It happens. And sometimes you use the tech for more practical reasons that have nothing to do with your disease/impairments, but rather to do with the barriers that exist in society. Maybe walkers or walking sticks are easier in the airport than your wheelchair is, for example, even though the wheelchair is more comfortable. Maybe you don't want to risk the airport damaging or losing your expensive and valuable wheelchair. Maybe you'd use your wheelchair all the time if society didn't suck so much.
sasha_feather: Max from Dark Angel (Max from Dark Angel)
I got most of my thinking on this topic from [personal profile] jesse_the_k; also some folks on twitter and at conventions.

A disability exercise is a training for abled folks, where a teacher or leader encourages people to take on the trappings of disability for a short time in order to learn about what it is like to be disabled. This might take the form of tooling around in a wheelchair, wearing a blindfold or ear muffs, or some other form of what is essentially "crip face": taking on part of the identity of a disabled person without experiencing the fullness of that identity.

I highly dislike such exercises and this post is about why. First off, I don't think that they are 100% bad or wrong, and I don't think it is always wrong to play with one's identity. I have written elsewhere about how I approve of abled people helping to make assistive technology cool, as does Ben Mattlin is his Op-Ed piece, When Wheelchairs are Cool. I think there is nuance and shades of experience everywhere.

But the main thrust of disability exercises-- to think that in a short space of time that one can teach a group of people about what it's like to be disabled-- is basically wrong.

* When you first becomes disabled, and/or first start using assistive tech, you are likely to be bad at it. There is a learning curve, just like learning to dance, swim, or ride a bike. It takes a while to become competent at adjusting to your body's differences and the tech you are using. But eventually you do become competent at life. Doing a disability exercise for an hour, day, or even a few days gives you only the experience of incompetence, and likely will lead you to believe that disabled people live very hard lives-- the lives of doggie-paddle swimmers instead of practiced butterfly-swimmers.

* Many disabled folks live in a community. We have the support of friends, family, and a disabled community of our choosing. I have a chosen internet community and political identity that I value very much. I doubt that such disability exercises present or explore these identities and networks. Separated from them, again my life would be much harder than it is.

* The social justice model of disability can be shown in other ways. If disability is created in the environment, this can easily be created in an exercise to make abled people disabled. Have them, in order to get onto a stage, be required to climb up a knotted rope, for instance. As one friend said on Twitter: in order to simulate my disability, wait endlessly in a doctor's office and then be scolded for taking pain meds. This is a way of expanding our ideas about disability and accessibility: requiring to fill out complex and endless paperwork for Medicare is way of disabling people. It's a more political thought than putting a blindfold on someone and having them stumble around a room.

* Some of the supposedly abled people in any group may be disabled and not know it, or may not identify as such. Learning about the social model of disability will likely help them. The social model helps me frequently identify barriers in the environment and think about ways to lower or deconstruct such barriers (not "overcome" them, a term that focuses on personal triumph rather than community or political will).

* I do think that exploring stigma is valuable. For instance, even using a cane, for me, will get me questions from strangers and acquaintances as my disability moves from invisible to visible. People will open doors for me and treat me differently. Walking with a friend in a wheelchair (when I'm not using a cane) means that people think I am a personal carer. Observations like these are valuable.

* However, simply listening and believing disabled folks when they speak and write about their experiences is sufficient. One does not have to do a "disability exercise" which is essentially disability tourism, and can be exotifying. The same is true for listening to stories and experiences that are different than your own in any way.
sasha_feather: Retro-style poster of skier on pluto.   (Dr House)
Do y'all have any recommendations for canes?
sasha_feather: Retro-style poster of skier on pluto.   (Default)
Me and My 424 a Dark Angel vid by LC. This vid is about Logan and his obsessions. I've been asked to talk about it at WisCon, which I'm sure I can do off the cuff, but this is me starting to think about it in a bit more of an organized manner.

Me and my 424 lyrics )

Does anyone know the actual meaning of this song? Is a 424 actual obsolete tech that I should know about?

Nude Descending a Staircase No 2 - Wikipedia

image of Marcel Duchamp descending a staircase )

In canon Logan is obsessed with wanting to walk again once he is disabled. SF means help him get closer to being able to: blood transfusions from the mutants, the exoskeleton. There is an emotional distance between himself and Max because she is so much more physically able than he is, except when she is not: she has seizures that are poorly controlled (this very interesting plot line was dropped in S2).

The vid expands on Logan's character by showing him as a person who loves technology for tech's sake. Who will fiddle and repair things just for fun. But tech's weakness, as especially experienced by disabled folks, is that if something becomes obsolete when you are dependent upon it? You are SOL. Tech is also not able to fill the distance between Logan and Max: witness them hanging up their phones. They reach out to each other, sometimes they touch, sometimes they fail to. Embodiment, technology, disability, ability.
sasha_feather: Black, white, and red image of woman with futuristic helmet (Sci Fi Woman)
A narrative vid you love

Half the Man by [personal profile] isagel. Multifandom.

This is a vid done for [community profile] kink_bingo, what used to be the "amputee fetishism" square (which has now been incorporated into body alteration/injury). I recommend reading the warnings and notes at isagel's journal.

I love this vid for many reasons but partly because it's a great disability narrative. At the beginning, there is fear, horror, villains with hooks, violence. Moving onto living with a lost limb, darkness, despair, pain and isolation. Then the turn, shown in the putting on or taking off of clothing and prosthetics: owning one's body, acceptance, even pride. And the variety of the prosthetics here is awesome (chainsaws!). Then onto images of awesome, of romantic success, of conquering one's enemies, of playing the piano and the guitar, of enjoying life. This vid makes me want to cheer.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
I keep meaning to write about the WisCon panel I was on called "Flesh Colored bandadges and Skin Jobs in real life and SF."
What do class, gender, age, race, and ethnicity have to do with our social perceptions of prostheses? Do class, age, race, gender, or ethnicity matter when it comes to cyborg enhancements of the body? Or is the body of a cyborg a smooth, ideology–free zone?

Luckily, a couple of others have written about it, which means I don't have to remember everything:

The Hathor Legacy

"Dr. Ben Mack: Prominent User of the Internet" (epi-lj)

I talked a lot during this panel and felt that the panel itself was very thought-provoking. My mind goes in five hundred directions on this topic and it's hard to rein myself in.

I mentioned Aimee Mullins who is an athlete, model, and speaker. She has many different prosthetic legs that she wears. Some of them are works of art.

"Flesh-colored bandages" refers to the beige tone of band-aids and ACE wraps, which of course is racist, and the whole reason they are colored this way is for white people to try and "pass" as non-disabled. It's not like people don't notice and comment on such things anyway. Once in a while you might be able to pass. Do you want to pass? Would you rather have a flashy, stylish piece of assistive tech? I talked about wearing a wrist brace, and how I would rather wear one that looks like a gauntlet, or is gray with circuits, or is argyle. In short, something stylish. If people are going to notice, let them notice! Make it cool! Someone said that kids' band-aids often have cartoon characters for this reason, the coolness factor.

We all struggled with the "ideology-free zone" concept. I don't think anyone knows what this means. I said that ideology is not just how others see us, it is how we see ourselves. My disability status is part of my self-identity. I ranted about James Cameron's Avatar a bit and how I don't believe in the dream of turning in one's disabled body for a fresh, new alien one. First of all, doesn't the alien body have a brain (and therefore mind) of it's own? Secondly, Jake Sully's body is him. I reject your Cartesian mind-body disconnect! This gets complex, of course, and I could go on and on for hours, back and forth over this point. The feminist discourse in particular values "our bodies, ourselves" and for that reason thinking about how one sees oneself and one's body is very important. It is very important to me personally and my identity. Someone (I think Laurel) talked about the internet and how it allows "escape" and how it is assistive tech for many people, including disabled people, and this is where part of the avatar myth may come from, which is a good point.

Something I enjoy thinking about and struggle with is something that I've been calling the spectrum of "body acceptance" vs. "body modification". Someone who is extremely into body acceptance would modify her body very little, and only out of practical necessity; someone very into body modification might download her brain into a robot avatar. I'm more towards the acceptance end: I don't even have pierced ears! And there is probably a natural tendency to fall on different places along this spectrum.

Then there is a division between people who modify their bodies by choice, and people who modify their bodies not by choice, and all the things that might affect choice: money, cultural influences (including race, class, etc), employment and immigration status, enrollment in the military, etc.

Is body modification an "improvement"? I am very careful to say-- to whom? Hopefully it is to the person who gets it. No one else should be the judge. I myself struggle with this point.

I find lately that I do not draw a line between the concept of "cyborg" and "android" (sentient android). What is the difference really? Some biologic material? For that matter, where is the line between cyborg and non-human cyborg, I mean non-cyborg human? Is there one?

We didn't talk about SF as much as I would have liked to. We did not discuss The Cyborg Manifesto (which I have not yet read), or Blade Runner, for that matter. Some other titles did come up.

***

When I talked about hacking a wheelchair, I got that idea entirely from Liz Henry, who is all over the internet, including at Composite: Poetics and Tech, Hackability, Geek Feminism, and DW. Why is a wheelchair a medical device and a bike can be bought anywhere? Why is assistive tech proprietary and obscure? It should be open source. What does it mean if part of your body is owned by a corporation? What if the part breaks down and the corporation no longer exists?

Idea for next year: Do-it-yourself Assistive Tech panel.

ETA: Here is the slide show I was thinking of:

Liz Henry's Your Flying JetPack AWESOME!

ETA2: Video of the OSCON flying jetpack talk (autoplays)
Liz's report of the talk (near the bottom of the post
sasha_feather: Retro-style poster of skier on pluto.   (Default)
Or, hey look I wrote something!

Guest Ableist Word Profile: Crutch at FWD/Feminists with Disabilities

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