jesse_the_k | Entries tagged with disability:history

Wow I loved this doc! Is there anybody out there?, 87 minutes, UK, 2023. Directed by Ella Glendining, in English with precise captions and audio description.

Blurb:

Born with a rare disability, filmmaker Ella Glendining wonders if there is anyone who can share the experience of living in a body like hers. This simple question—one which non disabled people take for granted, leads to a journey to not only others who live like her—but to the realization that meeting them changes how she views herself in the world, as well as many surprises along the way.

Glendining includes archival footage of her own childhood (older videotapes with flashing lights across the bottom of the screen) as well as horrifying evidence of rank bigotry that disabled kids in the UK. She talks about loving bodies, her own and others’. She documents accepting parenting from her own youth and with her own child, as well as the challenges of wanting to have a "perfect birth" (no drugs, no knives). She demonstrates access intimacy and cross-disability solidarity, interacts with one great doctor and one surgeon-on-a-mission to normalize kids through massive pain, and finally answers the title question yes! meeting three people with bodies similar to hers. I got bi vibes from the doc but I don’t remember her explicitly coming out. In this extensive interview at Diva Magazine, she does explore her bisexuality: https://diva-magazine.com/2023/11/13/ella-glendining-is-there-anybody-out-there/.

I want every parent of a kid with orthopedic impairments to watch this film today, before they ponder any more "treatments." It would also be a great discussion starter for a classroom or activist group.

( Where to watch and trailer )

Kevin Gotkin’s Crip News shows up in my mailbox on Mondays. His principal focus is on English-speaking crip art and artists (like himself), but he inevitably encounters disability policy issues. Today I appreciated:

MLK, Guaranteed Income, & Disability

Guaranteed income (GI) programs offer monthly direct cash transfers to people who need help. And when organizers talk about this work (like Michael Tubbs on NPR in 2021), they often cite MLK’s 1967 “Where Do We Go From Here?” speech.

MLK named disability in his case for GI. Black single mothers of the National Welfare Rights Organization (NWRO) helped him understand that expanding access to employment was an incomplete approach. For “those at the lowest economic level,” including “the aged and chronically ill,” he said, “we must create incomes.”

But today’s GI movement, which has swelled since 2020, has abandoned the radical legacy MLK helped popularize. The NWRO proposed a Guaranteed Adequate Income. Not a cash supplement. An income that can actually support a family. Most programs across the U.S. today offer several hundred dollars per month (rarely over $1000) for only a short period of time.

This doesn’t just leave disabled people behind - it causes harm. Most often, GI programs force people enrolled in existing public benefit programs, like SNAP and SSI, to choose between accepting the cash payments and experiencing a double cliff (the cash reduces or eliminates other benefits and then disappears itself). Some programs even specifically exclude anyone who receives SSI. And people like Andrew Yang are hijacking the framework to imagine cash transfers as a consolidation or wholesale replacement of public benefit programs.

https://cripnews.substack.com/p/mlk-guaranteed-income-and-disability

Another great column from s.e.smith, who goes deep into the flock of starlings metaphor. The topic is the surge of people newly disabled by post-acute sequelae of SARS-CoV-2, better known as Long Covid. While disability elders can see this as a chance to mentor the newbies, it’s also a chance for us to see the world anew:

( 340 words )

https://catapult.co/stories/se-smith-year-in-review-long-covid-disability-chronic-illness

I’ve got around 400 books I no longer want to dust. (I'm saving my vision for new graphic novels.)

100+ science fiction or fantasy, dating back to Again Dangerous Visions from the Science Fiction Book Club
100 fiction, non-fiction, poetry standards found on the bookshelf of every 65-year-old feminist
40+ art topics including architecture, type, books, Celtic patterns, beadwork, songbooks
160+ disability related: theory, history, memoir — in print or graphic novel formats

I’m not interested in making money, and shipping them out would cost a lot as well. Almost all these titles are already available in my municipal and UW-Madison libraries, so donation seems unlikely.

MyGuy has volunteered to scan the titles into a database. That gives me a list, but what do I do next?

Money, marriage, and madness:
The life of Anna Ott
Kim E. Nielsen

Nineteenth century feminists battled patriarchal definition. Learned men asserted that women's bodies were constitutionally subject to weakness and madness. This is sexism and it's also ableism. Men asserted our defective bodyminds disqualified us from public education, voting, and many kinds of work.

Nielsen writes about Anna Ott, an early 19th century Swiss immigrant. Ott married and divorced a doctor in Ohio, gaining enough money to move to Madison and purchase property just as the town was booming into Wisconsin's capital city. She married again and practiced medicine. Her violent husband committed her to the local insane asylum, where she lived for 20 years until her death. A handful of "newsy" facts about her can be found in local newspapers: her divorce, that every room in her house had two doors, her alleged deathbed confession to bank robbery.

Nielsen writes as an historian of feminism and disability. I found her prose, midway between popular and academese, to be quite understandable. She always recognizes Ott’s peculiar social status: negatives include woman, immigrant, "mad" while positives include: property owner, doctors, whiteness. Even Anna Ott, who was remarkable for several reasons, is more clearly seen by her absence from the historical record. Before I read this short work that statement would have mystified me. That most of the events are set where I live makes this an engaging read, even though it’s full of physical and emotional violence and repression. Content notes: forced commitment and treatment in 19th century asylums; domestic violence; children disappearing.

ETA: Thanks to tarascon for getting the book's title right!

425 words capture Nielsen’s style and philosophy:

( words words words )

Get yours here:

ebook - Bookshare - Find in library - U of I publisher - JSTOR

thanks to Susan & Teddy Fitzmaurice, with grants from a wide variety of folks, ADA 30 - Michigan is a festival of disability voices. They're currently at week 4 of 9. Until 27 September, you can attend their daily free programming, mostly 2pm CDT (1900 UTC).

These are all virtual events. Closed captioning and ASL interpretation will be available for all. Audio description will be added for primarily visual events. There is no cost to participate. But you will need to register at Eventbrite to get a password

registration link is labeled "Eventbrite" at the home page[1]

https://mi-ada.org

Don't let "Michigan" stop you: program includes items of world-wide interest, such as personal narratives, advocacy strategies for IEPs, history lecture, accessible movement and dance, films, and much more!

I particularly recommend today's session with Tom Olin, Photojournalist of the disability movement. He was there for the noisy disability activism in the US, for the last 40 years. (24 August 1900 UTC)

Too many to list them all; this one looks great

True Inclusion is Revolutionary: Disability Inclusive & Accessible Organizing Practices

Learn with member Dessa Cosma how Detroit Disability Power is mobilizing Detroit’s disability community to fight for inclusion, rights, and respect, alongside and included with mainstream activists and protesters fighting for justice. (3 Sept 2020 1900 UTC)

[1] home page is also the landing page for all events, with a single link via workshop title. Very accessible information design -- thanks to Susan's lived experience with intellectual disability.

The Crip Camp documentary celebrates a hippie-run summer camp where many disabled people discovered the power of crip community. Audio-described trailer at the end.

As a follow-on, the producers are running the Crip Camp Official Virtual Experience.

Ninety minute online seminars on Sunday afternoons through the end of August, featuring disability justice leaders from all over the US. They’re foregrounding black, indigenous, and people of color. (Commonly abbreviated BIPOC, which I initially read as "bisexual")

The Zoom presentations will have ASL and captioning, and you can address other access needs on the sign up form.

https://cripcamp.com/officialvirtualexperience

There's an accompanying private Facebook group, too.

( click for Crip Camp trailer )

Another fascinating essay from nursingclio_feed explores how anti-Asian racism builds on stigma, as per Goffman.

But targeting wet markets as the source of future pandemics obscures the complexity of changing human-wildlife relationships in the 21st century and their role in disease emergence. Anthropogenic changes to the environment including industrial and residential development, habitat disruption and destruction, and agricultural practices introduce new opportunities for pathogens to jump from one species into another. Wet markets that feature many different wildlife in the same space provide one opportunity for such species jumps to occur, but so do logging, mining, road construction, and rapid urban growth. Zoonotic diseases may emerge from interactions between fruit bats and pig farms in Malaysia, as in the case of the Nipah virus, or alongside residential development in the formerly forested suburbs of Connecticut, like Lyme disease. Exclusively focusing on wet markets and coronavirus ignores the history and reality of disease ecology.

https://nursingclio.org/2020/06/02/absolutely-disgusting-wet-markets-stigma-theory-and-xenophobia

AndrewPulrang always makes me think with his posts pondering disability issues. Lots to love at his blog, https://www.disabilitythinking.com

In the last month, he’s been posting a lot at Forbes on the intersection of disability, bigotry, and COVID-19

( hard truths to ponder )

Nursing Clio is a fascinating site, "an open access, peer-reviewed, collaborative blog project that ties historical scholarship to present-day issues related to gender and medicine." Its name honors Clio, the muse of History in Greek Mythology, and declares the double intention to nurture history and document the caring and power of nursing.

Two brief tastes

( 250 words )

Nursing Clio’s resources pages provide even more lively reading at the intersection of medicine and politics, broadly conceived — connections to archives, discussions, and platforms that explore women, health, race, disability and history.

https://nursingclio.org/resources/

(I've just added nursingclio_feed to my Dreamwidth feed reader -- it will take a few days to update.)

beatrice_otter does a good job explaining why my visceral reaction to the Tiptree Award has always included repulsion re Alice Sheldon's final acts of murdering her husband and committing suicide. With links to the Tiptree Motherboard statements as well as File 770 discussion.

https://beatrice-otter.dreamwidth.org/388310.html

Summary of the issue:

https://emceeaich.dreamwidth.org/225120.html

Extensive local-to-Dreamwidth discussion

https://james-davis-nicoll.dreamwidth.org/12372638.html

Josh Lukin was a polymath: smart, kind, musical, punster, every day, high academic. Every time I encountered him, he radiated assurance that this was the start of something wonderful.

There are hundreds of tributes on (his wife) Ann Keefer's Facebook feed.

https://www.facebook.com/746109651/posts/10156931539849652

I regret the adventures we'll never have. I was thrice drawn into Josh's orbit: at several WisCons, at the 2013 Disclosing Disability conference, and at the 2014 Society for Disability Studies conference. I admired his masterfully terrible puns on FB, and his prose in many places.

He studied and wrote about mysteries, science fiction, and life with chronic pain. He was an Associate Professor in English at Temple University, and it's no surprise that his students loved him.

A handful of full-text articles appear on his blog. For each he generously shares the path to publication, because:

I provide some background on how each of these got published in order a) to give credit to everyone responsible and b) to give novice scholars a sense of how the process worked. I owe almost all of my appearances in print to the support and generosity of grad school mentors and/or of editors I met at conferences.

https://joshlukinwork.wordpress.com/about/

Some of my favorites since the last time it was cold (because it will be cold again soon).

A BRIDE’S STORY—Kaoru Mori( 4 of 5 )
Swimming Studies—Leanne Shapton ( 4 of 5 )
Good Kings, Bad Kings—Susan Nussbaum ( 4 of 5 )
Fading Scars—Corbett Joan O'Toole( 4 of 5 )

Just found out about a really cool movie in production, called FIXED. Made by a disabled filmmaker, the movie explores the meaning of assistive technology in our society. Must disabled people accept AT to become "normal"? What happens when the AT makes us superior? Do normate values inform the funding priorities for AT? Why should we research brain implants when people don't have access to health care?

As the filmmaker, Regan Brashear, puts it:

begin quote What's the film about? What does “disabled” mean when a man with no legs can run faster than many Olympic sprinters? With prenatal screening able to predict hundreds of probable conditions, who should determine what kind of people get to be born? If you could augment your body’s abilities in any way imaginable, what would you do and why? From pre-implantation genetic diagnosis to neural implants and bionic limbs, researchers around the world are hard at work developing a myriad of technologies to fix or enhance the human body, but what does it mean to design “better humans” and do we want to? FIXED follows three remarkable people: Gregor Wolbring, John Hockenberry, and Patty Berne – a scientist, a journalist and a community organizer – each of whom has a personal story of disability and a passionate engagement in the debates around emerging human enhancement technologies. quote ends

She's got lots more details and testimonials on her Kickstarter page
http://www.kickstarter.com/projects/394281483/fixed-the-science-fiction-of-human-enhancement-doc

I could tell she's One of Us by the donor categories, which include THE BORG SPECIAL; THE BIONIC WOMAN; and THE PROFESSOR XAVIER NEURAL ENHANCEMENT.

Current Mood: excited

Because I'm a worrier, the last few months have been hard for me personally. My family's bequest has meant I'm somewhat directly insulated from the impact of Wisconsin's conservative revolution, but many of my friends and colleagues aren't that lucky.

People with disabilities interact more with government. We are more likely to be poor, and therefore more likely to need the welfare system (living expenses, housing, food discounts, medical care).
Only comprehensive, government-wide action can undo the decades of systematic oppression documented in the prelude to the Americans with Disabilities Act.

The Disability Advocates Wisconsin Network provides a detailed yet understandable accounting of how people with disabilities are going to be affected in so many ways by the budget just passed.

I bring up this list because it neatly reminds us all that "disability issues," like "women's issues," are pretty darn broad.

Are you wondering "Who's ALEC?" The American Legislative Exchange Council was founded in 1973 by Henry Hyde, Lou Barnett, and Paul Weyrich. In brief, they're a group of policy wonks who develop model laws based on the values they hold dear: absolute free market capitalism, elimination of governmental regulation, deployment of public-private partnerships wherever possible. Wm Cronon, a UW-Madison history professor explores in greater detail on his web site.

I bring up ALEC because the misery we're experiencing may be coming to a state like you -- and it may be letter-for-letter what we've been protesting against. Informed is always a good look on a radical.

Current Mood: anxious

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.

Current Mood: awake

The Whirlwind Network of wheelchair builders was born in 1980 when Ralf Hotchkiss met a group of 4 disabled men who shared one wheelchair in a hospital in Managua, Nicaragua. They hatched the idea of setting up a shop in Managua that would build wheelchairs made from locally available parts, be locally repairable, and which would require little initial capital to get started.

This is the very best sort of appropriate technology: power in the hands of the people who need it the most.

WWI's RoughRider wheelchair Manual wheelchair with wide bicycle tires, very wide casters, and gracefully curving frame.

The first design was near completion by 1983, having undergone numerous prototype revisions and having been tested over hundreds of miles by many different riders. Since then, the Network has expanded to hundreds of organizations and individuals in more than 50 countries around the world and includes disability activists, rehabilitation professionals, and international development non-governmental organizations. The Network has supported the cross-fertilization of new ideas and designs generated around the world. The active involvement of wheelchair riders in design and production has been integral to the Network’s success.

The Whirlwind Roughrider is inexpensive to manufacture, made from widely available stock materials. Unlike the second-hand chrome wheelchairs donated by well-meaning first world countries, Whirlwind Chairs are designed for dusty dirt roads and easy maintenance. As Marc Krizack put in his in-depth examination of the shortcomings of first-world wheelchair donation:

Providing wheelchairs is not about wheelchairs. It is about providing people with the one thing they need to move out into their own communities—to go where the action is. It is about integrating people with disabilities into their society.

Current Mood: grateful

Disability-rights advocates hate institutions. Their high walls and one-way doors nurture a culture of sexual, physical and mental abuse. The most important Supreme Court ruling so far on the Americans with Disabilities Act has been Olmstead v L.C., which held that sentencing people with disabilities to institutions when they could live in the community constituted discrimination.

Almost ten years later, states are still fighting to keep large institutions open (and advocates are still suing to switch spending from supporting institutions to supporting people living in the community). As always, civil rights laws never automatically mean discrimination is over: it only gives us the legal standing to sue.

Today my invaluable Inclusion Daily Express brought news of excellent political theater necessitated by the State of Texas' refusal to implement the Olmstead decision.

As the Inclusion Daily Express Archives show: Texas Houses Largest Number Of Americans Behind Institution Walls

( Shouting 'Fifty-three murders on your watch!' and 'People are dying, shame on you!' the group of about 20 protesters interrupted the meeting. They waved signs and emptied a bag of 53 toy watches, painted red, on the floor near the panel. )

"" (Watch on YouTube)

Current Mood: angry

Truth stranger than SF, yet again. Brrrr.

People with albinism share some characteristics: a host of vision impairments; very pale skin with little or no melanin; and intense stigma for being so visibly different. Any kind of human, no matter their "race," can have albinism: at the home page of the National Organization for Albinism and Hypopigmentation, there's a photo featuring African-American, Asian, and White people with albinism.

The absence of melanin in their skin means they're particularly vulnerable to skin cancer, especially in tropical locations such as Tanzania, where there's a relatively high number with this genetic variation: 1 in 3000 compared to 1 in 17,000 here in the US.

Numbers can't explain, however, why some folks are murdering people with albinism in order to use their body parts as good luck charms. Here's an excerpt from today's NYTimes story: Albinos, Long Shunned, Face Threat in Tanzania

--- begin forward ---

The night used to be theirs, a time when Mr. Mluge and his fair-skinned sons and daughters could stroll outside together without worrying about the sun.

Now they bolt themselves in, peering through bars.

Just two weeks ago, while Mr. Mluge’s children were sleeping, a car pulled up to their house and four men got out to look around.

“I’m worried,” he said. “They know we are here.”

Mr. Mluge said he tried to read the license plate. But he couldn’t make out the numbers, and the car drove off.

--- forward ends ---

Current Music: Enya

Post WisCon means 1000 new books on the reading list. But I'm still working on the list from previous cons.

This week:

Forced myself up to disk 5 of 11 on Harry Potter number 2. Just couldn't go forward. The narrator surpassed the material: he created vocal personas without drawing attention to it. A touchstone of modern SFF and I just bounced. Ah well.

Vigilant SF by James Alan Gardner. Fun strong heroine, nice alien interactions, little bit too grounded in early 21st century roles & slang, don't know what I make of the "Explorer Corps" staffed solely by disabled people. Short chapters make for perfect bedtime reading. May go back to the earlier works. I wish I could time travel back and exchange these for the Heinleins I inhaled ca 10 - 12. Not quite up to Rite of Passage, but in the same place for a young teen.

We Are On Our Own memoir by Miriam Katin. Holocaust stories--whether Hungary 1944 or Rwanda 1994 -- are better told through fiction, and increasingly better told through comix. The histories I've pored over supplied me with ample nightmares and details, but very little of the experience. The comix enable the reader to zoom in & out between the daily horror and the conflicted now. Katin alternates smudgy charcoal with Disneyesque colorful pencils. Hungarian Jewry was "lucky" as the Final Solution touched them very late; Katin makes clear the minimal difference between Nazi and Soviet invasions. Told principally through the eyes of a small child; an excellent bookend to Fateless, Imre Kertesz's uniquely adolescent viewpoint of the trip from Budapest to the Lager and back.

The other bookend (a triangular bookshelf! Would it hold more?) for Katin is Deogratias, Jean-Philippe Stassen's stunningly beautiful and deeply horrifying tone poem on Rwanda's autogenocide.

Time to leave the written word behind and step forward into the rainy day.

Current Mood: contemplative

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Inside the Little Plastic Castle

adventures with Jesse the K

Entries tagged with disability:history

rave: "Is there anybody out there?" film documentary

boost: Learning from MLK and the NWRO on Guaranteed Income

MLK, Guaranteed Income, & Disability

boost: Listening to Long Covid’s Lessons and Teachers—Today and Tomorrow

help: Take My Library, Please

Kim Nielsen writes Anna Ott’s Life from historical voids

Five weeks of disability history, justice, culture & celebration

True Inclusion is Revolutionary: Disability Inclusive & Accessible Organizing Practices

Learn with Disabled BIPOC Teachers on Free CripCamp Webinars

boost: Absolutely Disgusting: Wet Markets, Stigma Theory, and Xenophobia

boost: Andrew Pulrang on Health Care Triage and Disabled People

signal boost: Nursing Clio

Tiptree Award renaming controversy

Remembering Josh Lukin -- Pop Culture Scholar, Disability Studies Advocate, Punster, Mensch

Backlog reading backlog

FIXED The Science Fiction of Human Enhancement

Concrete Impact of ALEC's Budget Implementation

(Almost) Plain Language re: ADA Amendments Act

Rolling Into the New Year

The Only Safe Institution is an Empty One

Cruel Confluence of Superstition & Disablism

On the nightstand

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