Inside the Little Plastic Castle

From "An Unquiet Mind," s.e. smith's excellent monthly column at Catapult.co which explores disability identity and its interaction with the world at large.

What If Accessibility Was Also Inclusive?

“This was fine for someone else,” someone frustrated at being asked to accommodate me says, as though I am not an expert on my own self, as though all disabled people have the same needs. Why isn’t this thing that someone who isn’t you found perfectly acceptable enough? We spent all this money on it. As though being disabled does not in itself confer a literal body of knowledge, an expertise, a skill, an awareness of precisely what I need—because I have spent a lifetime fighting for it. I have a mastery of myself, a master’s degree in myself, yet I am followed, everywhere, by reminders that myself is too much. https://catapult.co/stories/what-if-accessibility-was-also-inclusive-column-unquiet-mind-s-e-smith

I adore s.e. smith’s viewpoint and way with words! Two other essays introduced me to myself.

The small beauty of funeral sex

OMG! It’s not just me who finds death sex so highly charged.

There is a thing that happens with those adjacent to death that many people seem to be afraid to speak of, perhaps because it feels startling and shameful when it happens to them for the first time. Perhaps because no one speaks of it, they assume they are alone in this, perverse, broken. But those of us in the know are well aware that funerals—memorials, celebrations of life, transition ceremonies, Passages (always with a capital P)—are absolutely the best places for hooking up.

https://catapult.co/stories/the-small-beauty-of-funeral-sex-essay-s-e-smith

When disability is a toxic legacy

s.e. smith nails the concept of "debility," something I struggled to understand last year at the SDS conference. When impairment is the result of trauma — whether that’s state or personal violence, especially due to marginalized status — the social model of disability isn’t enough.

Talking about how environmental disparities can contribute to disability becomes complicated as a disabled person who is proud and confident in my identity.

https://catapult.co/stories/when-disability-is-a-toxic-legacy-se-smith

I met s.e. smith through FWD: Feminists With Disabilities, an excellent group blog that’s further proof that longevity is not equal to value. Later I had the good fortune to meet s.e. in person. I’ve always admired smith’s ways with words, and I was delighted but not surprised to learn that three of smith’s monthly columns at Catapult won a 2020 US National Magazine Award.

Explore s.e. smith’s stuff at https://www.realsesmith.com/

I really loved Have Dog, Will Travel—Stephen Kuusisto ( 5 of 5 )

( excerpts )

45-minute audio of author interview with Charity Nebbe, Talk of Iowa public radio

Scores of guide-dog related posts from Kuusisto’s blog include early drafts of the book

Back in October 2013, I had the good fortune to attend the “Disability Disclosure in/and Higher Education Conference.” It was a disability studies rock-star event: many of my favorite thinkers presented, and I learned tons of stuff. The focus was on disclosing in order to get accommodations: unusually, we examined both faculty and student experiences. An essay collection resulted from the bubbly stew of ideas, new from the University Michigan Press:

Negotiating Disability: Stephanie L. Kerschbaum, Laura T. Eisenman, James M. Jones, eds.

https://www.press.umich.edu/9426902/negotiating_disability

I sampled it via JSTOR, it’s also available on other electronic databases: http://www.worldcat.org/oclc/1012609341.

I was particularly delighted by the essay challenging stoicism and disability pride from Josh Lukin joshlukinworks. Josh floats in my ethereal intersection of disability studies and SF, and I first met him at WisCon. He's a wicked punster, a much-lauded teacher, and my kind of all-around intellectual. Josh rightly points out that when us social-model types push “disability pride” we can also create our own version of the “overcoming” trope we love to hate.

Essay nut graph:

begin quote
Once one realizes that one’s disability is not a moral failing, one is supposed, judging by the syllabi, books, and blog posts I have encountered, to embrace the social model of disability, become a proud activist, and write a memoir. I do have an unpublished draft of a memoir (Urgency: Growing Up with Crohn’s Disease), and I have been credited with activism in my teaching and scholarship. But the social model part and the pride part don’t work well for me, and I know from a number of students and from conversations in the disability community that I am not unique in that. So I want to consider why that might be, and how theoretical and science-fictional models offer alternative ways of being disabled–ways that are not really new discoveries on my part but that are already immanent in crip culture.
quote ends

“Science Fiction, Affect, and Crip Self-Invention–or, How Philip K. Dick Made Me Disabled.” pp. 227–242. www.jstor.org/stable/10.3998/mpub.9426902.17

ETA: I wrote this for May 1st, Blogging Against Disablism Day. many more posts
http://blobolobolob.blogspot.co.uk/p/blogging-against-disablism-day-2016.html

Nineteen ninety-three: I got my first powerchair, my city began a growth spurt, and the ADA design guidelines had just been published. This should have meant smooth rolling: many new accessible buildings!
( Yet many accessible locations are destroyed by deliberate barriers )

This is the continual battle against the normate space invaders. This is why accessible design and construction isn't enough.

If you think this barrier wasn't really created on purpose, that it's just the thoughtlessness of the ill-informed, I know that's not the case. I've visited this particular shop to inform them they've recreated barriers unnecessarily, and asked them to stop destroying the built-in accessibility. Their response is Oh, don't worry, we'll be happy to help if you just ask.

Nondisabled people may wonder, so what's so hard about asking? Great effort has been made to create accessible environments. Why should this thoughtless disablism require us to ask permission over and over? We are here; we are the public, as Dave Hingsburger put it so eloquently. When nondisabled people recolonize our spaces, we must regroup, react, and respond.

Today the Americans with Disabilities Amendments Act goes into force. Sadly, the implementing regs have not yet been written, and as with most US Federal laws, the regulations are the details where the devil resides.

However, the purpose of legislative intent on the Amendments Act is clear: reverse the US Supreme Court's radical restriction of who was considered disabled under the law, and therefore who was protected under the ADA.

The Job Accommodation Network has the clearest description (I've seen) of how the Amendments Act language accomplishes this goal. Don your logical thinking beanie and read all about it on JAN's website.

Here's one example of how the changes in the Amendment Act mean better coverage for people with mental illness, cancer, diabetes, and epilepsy, where it's not so much the conditions themselves, as the implications of living with them, which require accommodation. Before the Amendments Act, the Supremes basically said, "If you can medicate the condition, then it's not a problem."

JAN's summary of the changes:

One thing to keep in mind regarding a request for reasonable accommodation is that the accommodation does not have to be tied to the substantially limited major life activity that established that the employee has a disability. For example, a person with cancer may establish that she has a disability because she is substantially limited in normal cell growth, which is listed as a major life activity under the “bodily functions” category in the Amendments Act. However, her accommodation request is related to fatigue and nausea resulting from her medical treatment. Once the employee establishes that she has a disability, then the employer must consider providing accommodations for any limitations she has as a result of her impairment, not just the limitation that established her disability.

Editorial aside: one of the reasons I love JAN's explanation is its "twelve days of Xmas" format. Very tasty for the slow learners among us.

Substantive commentary on WisCon awaits the day I can ingest more than 400 calories (my brain needs protein to work, and the Madison Misery hit me on Tuesday).

Not surprised but perturbed that what gets singled out for scorn as "political correctness" in this local article are all disability accommodations. In some lights this means that the disability rights movement has arrived firmly enough in general consciousness to be mocked, but I think it's more likely that mocking people with disabilities' needs has always been fashionable.

[ETA 29-May-08 before *eating dinner*] I was too sensitive to the words "politically correct" -- details below.

On the plus side, the loving mutual support in the face of RL and online hatred towards non-skinny, non-cis-gendered, non-normate bodies is evidence of what we can do right.

My impairments are visible and invisible, which matters more to non-disabled people than to me. Besides, I'm totally out about the invisible ones, so it's not like I'm passing for a sane person.

They are also absolute and relative, and that's taken much longer to understand.

Absolute impairments have hard limits. No glasses, can't read print, period. Eat gluten, gut swells, headache, disgusting things happen.

Relative impairments are designated by chalk lines. Reach above my head today? OK fine. Reach above my head tomorrow? Get dizzy. Reach above my head last week? Passed out cold. Where do I draw the chalk line? What if I'm really hungry for that can of sardines? Do I wait?

Go with my partner to the dog park. Known distance I can travel with two walking sticks. Have been doing it for months. Today, it's around 8 degrees warmer. Almost pass out twice. Rest of afternoon is spent horizontal recovering.

Really thrilling book. Want to finish it -- only 100 pages left! But if I stay up past midnight, will I crash into depression tomorrow? Dragging my butt through the day, maybe it's my bloods. Ooooh, a cup of lapsang souchang! But will that trigger mania for a week? Would mania be a positive alternative to dragging my butt?

I draw the chalk lines. Their "true" location depends. If I draw them too cautiously, I'm missing out, or not contributing enough. If I get fed up with drawing them, I pay and pay and pay.

I finally had my left shoulder in a totally pain-free state six years ago. Wheee! Time to get a new stick of chalk! Let's experiment with something new! Take an "adapted" class from a clueless teacher. I try one motion, it hurts, I ask for help, she shrugs and the damn pain is back again. Four years later and I'm still feeling it.

Repeatedly chalking in the lines is as enervating as applying for Social Security Disability. Sure fine let me spend months filling out forms detailing all the things I can't do. Oh, now it's time to define a favorite activity as outside the circle. How close to the edge should I draw the line? Post-con and now I have to draw them again?