sasha_feather: Retro-style poster of skier on pluto.   (Default)
http://velamag.com/superbabies-dont-cry/

SuperBabies Don't Cry
by Heather Kirn Lanier

"With my woo-woo belief that the mind could control the body, I’d pushed disability away. I’d done this by subscribing to the belief that disability always had an avoidable cause. I’d believed I could control the body because I could not stomach the truth: that the body is fragile, ephemeral. I had not realized this about myself. I had not realized this about my parents. I did not see our adamant devotion to vitamins and affirmations and organics as fear-based, as an attempt to control the uncontrollable. I also did not see it as political. I saw it as morally good. I was making a SuperHuman. What was wrong with that?"

Content Notes: Pregnancy, Birth, Parenting, Internalized Ableism
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: Retro-style poster of skier on pluto.   (Default)
Today I read an obituary which said, despite the person's chronic disease, "he rarely missed a day of work."

As someone who has often called in sick, I'm always bothered by this common phrase; it praises people who put work before health. Not just their own health, but the health of others: coming to work while having a communicable illness puts others at risk too.

This phrase serves to enforce our place in a capitalist, production-oriented society, where work is the most important thing, and health and rest are distant followers. Workers are granted sick days, but to take them is some sort of indulgence rather than a necessary part of being a human being with a body. We also forget that sick days are something that unions have fought for.

Because I'm always sick to some degree, I often struggle with deciding whether I am sick "enough" to call in, sick "enough" to stay home and rest. Typically I will feel guilty if I call in sick, even though my body demands rest. Having a chronic illness means that I need much more rest than the average person, and something like a migraine or cold will add to my need for rest. Language valorizing people who don't call in, ever, doesn't help to alleviate my guilt.

As I saw someone say on twitter: self care is a radical political act.
sasha_feather: Simon Pegg from Hot Fuzz holding a gun looking tough (hot fuzz)
I hope you all know by now that language and its effects are an issue near and dear to my heart. Language can be hostile or welcoming, centering or othering. This is particularly on my mind as I look at various "accessibility" policies for conventions in the SF/F world.

I am creating List of such conventions for the Geek Feminism Wiki. (This was inspired by their List of cons with anti-harassment policies.)

First, why is it helpful to have such policies online?

Because information is good access. The more information you can provide to people, even if it's to say that there are barriers to access, the better people can plan for their trip.
Secondly, if people have to ask to receive information, that in itself is a barrier. As many of us with anxiety, fatigue, or other disabilities know, it can be difficult to make that phone call or send that email. A lot of us are used to dealing with people on the other end of the line who aren't our allies and might make our lives more difficult when we ask for information.

As and someone working access, do you really want to give out the information again and again? Why not just do it once, and then point people at your webpage or printed materials?

I know there are some conventions that have had good access but don't have their policies online. Open Source Bridge, I'm looking at you. :)

Other conventions have their policies online (good!) but then make all kinds of mistakes with language. They send signals that they really don't want PWDs to attend at all, that they think people are faking disabilities in order to get good seats or other services (no one does this! seriously), and otherwise hostile language.

Several of these pages use the term "special needs". I don't think very many people on this planet have special needs. Most people have the same needs, it's just that some of us need accommodation in order to enjoy the same events at conventions, like getting to the programming rooms in a timely manner, being able to move through the hotel, being able to understand what is going on, being able to visit with friends, etc. I realize special needs is an introduced PC term for disabled people, but I am just not sure that it fits or is accurate. It makes it sound like disabled people want "more" (like champagne) when what we really want is the same stuff as everyone else (water in a glass we can hold).

Whenever you want to say or write "special needs", I suggest you substitute "accommodations" instead.

Let's Break down some of the specific policies and why they are problematic:

DragonCon

"We will have the Con schedule in large print available (to be read at our table or we can email a copy to you to print or download to your screen reading device)

If you have low vision, you better have a device for reading the program. Otherwise, you have to sit at the registration table to read the program! It's apparently too hard for them to print off a few more copies for low-vision attendees. (Remember, this is a for-profit con.) I really don't know why you would want people clustered around your reg desk that way.



We offer 5 stickers for badges, based on needs:

Wheelchair seating: for our wheeled folk, of course.
Chair in Line/End of Row: for non-wheeled folks with mobility impairments.
Proximity/ 50 ft. to Screen: for visual/lip reading access.
Sightlines: for access to the interpreter, safe space for working animals, and certain other unique situations.
Medical: This sticker is merely a place to put emergency information if you have a medical condition that the EMT needs to know about before they put you in the ambulance. It does not entitle you to any other services.


A person has to out themselves in order to get any of these services. It's right there on one's badge: everyone you interact with at the convention then knows you are a disabled person. It also positions whoever gives the sticker as an authority. I know a lot of people with mild hearing loss who don't consider themselves disabled, but who might benefit from line-of-sight seating. Such people wouldn't want to get a sticker even if they might use an otherwise reserved chair.


One important thing to remember: we will do our best to make sure events are accessible to you, but that does not mean we guarantee you a front row seat, or head-of-the-line privileges. If you are going to a very popular event, you must get there extra early to get a good seat, just like everyone else. The accessible seating will not be in the front row.


I guess if you move slowly, are delayed by crowded elevators, etc., you are screwed. Several other websites said this. Maybe these conventions should put a cap on their membership? (Oh wait, DragonCon is for profit.)

Phoenix Comic Con This is the worst one.

You get a special badge! Lucky you.

But the badge doesn't get you:

· Early access to panels and special events
· Guaranteed access into special events, photo ops, autographs, or panels.
· The ability to skip lines

So fuck you I guess! Especially if you are someone who can't stand for a long time!

Service Animals are always welcome at the Phoenix Convention Center. Animals are sometimes questioned if the need is not apparent, so we suggest attendees carry documentation with them for their companion.

Does anyone know if this is actually illegal? It sounds illegal to me. [eta: it is, see comments] Then again, it's Arizona... I don't think "welcome" means what they think it means, also, to be pedantic, you won't get very far questioning an animal!

Some of the other policies are much better, including for ReaderCon, FogCon, and Arisia (and WisCon, but no need to toot my own horn--plus, I always want to improve.) Some suggested bits of activism for those involved with conventions, or even those who aren't but who can do emailing:
*Encourage Conferences and Conventions to develop Access policies and list them online. Professional and Academic conferences, trade shows, etc can be included here.
*Encourage those with bad policies to improve them.

Comments and suggestions welcome.
sasha_feather: "subversive" in rainbow colors (subversive)
The "Ehrmagerd" meme needs to die.

Perhaps it is making fun of the way certain disabled people talk, in which case it is mean-spirited and ableist. Perhaps it is making fun of Valley-girl speech, in which case it is misogynist and still mean-spirited.

I am not humorless: I love memes; I just think they work best when pointing fun at those in power, not those who already lack power. In other words, I don't like it when humor is use to reinforce existing oppressive structures.

Feel free to link this post.
sasha_feather: Retro-style poster of skier on pluto.   (Default)
I was reading the other day at This Ain't Livin' about the Ashley X case: On Growth Attenuation and Moral Compromise. A warning: This is an upsetting case to read and learn about. (Thanks [personal profile] torachan for the link).

I first heard about this at a talk I went to where a candidate for a professorship was giving a slide show and lecture focused on disability. During the Q and A someone raised the issue of the Ashley X case. The questioner summarized the controversy and some discussion ensued. I remember that one young woman in particular seemed confused and defensive/uncomfortable.

The presenter, whose name I unfortunately do not recall, let the discussion go on for a bit before stopping it. She said, and I paraphrase, "All of the medical details can get confusing and upsetting, so I like to use a metaphor. Imagine you are caring for your elderly grandmother. It's difficult to get her up and down the stairs and into the tub because she is a tall woman. So, to fix this problem, you decide to cut off her legs to make her smaller."

That silenced the room.
sasha_feather: cake that says WTF on it (WTF cake)
[unlocked at DW, locked at LJ]

Bionics by Josh Fishman

...
But another bionic device has shown that the marriage of mind and machine can be both powerful and enduring, having been implanted in nearly 200,000 people around the world during the past 30 years. That device is the cochlear implant, and Aiden Kenny is among the latest recipients. Tammy Kenny, his mother, remembers when, a year ago, she learned that her baby was beyond the help of hearing aids.

"I would just hold him in my arms and cry," she says, "knowing he couldn't hear me. How would he ever get to know me? One time, my hus­band banged pots to­gether, hop­ing for a re­sponse." Aiden never heard the noise.

He hears banging pots now. In February 2009 surgeons at Johns Hopkins Hospital snaked thin lines with 22 electrodes into each cochlea, the part of the inner ear that normally detects sound vibrations. In Aiden, a microphone picks up sounds and sends signals to the electrodes, which pass them directly to the nerves.

"The day they turned on the implant, a month after surgery, we noticed he responded to sound," Tammy Kenny says. "He turned at the sound of my voice. That was amazing." Today, she says, with intensive therapy, he's picking up language, quickly catching up to his hearing peers.



All is takes is one click to Wikipedia to find out that there is a history of controversy around cochlear implants, because some in the Deaf community view them as a threat to Deaf culture and a way of "fixing" something that is not necessarily seen as a problem.

What I find more disturbing is that the above paragraphs focus on the emotions and desires of the presumably able-bodied parents, and there is no mention of what the child may need or want. It also plays into the trope of deafness as HOPELESS TRAGEDY. Well gee, people, maybe you could learn sign language.

Dear National Geographic, maybe you should hire better reporters.

OH FOR CEREAL.
sasha_feather: Teyla from Stargate: Atlantis (teyla)
This is in response to Feministing and Ableist Language; the link roundups are at [community profile] access_fandom.

It turns out that [livejournal.com profile] mystickeeper and I both got into separate arguments over ableist language in which the defender cited the dictionary. We each found it pretty upsetting. "How do you even argue that?" She asked me.

Well if someone is going to hold up a Holy Book and thump it at you, maybe there is no talking to that person, and you should disengage for the sake of your own emotional safety.

But this argument assumes that dictionaries are set texts, a canon handed down to us from a central authority, rather than living, changing texts that reflect the culture they arise from. We the people get to decide how language is used, not some cabal of dictionary writers sitting in a locked room somewhere. We have a lot a power!

I have a 1965 dictionary in my house, and I just looked up an offensive word in it. It does denote "usually taken to be offensive." I imagine the earlier editions did not have that note included in the definition.

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