Disability Thought Of The Week: More On Advocacy and Activism

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I’m going to try to write a blog post later this week on something I have been thinking about a lot lately.

My thought, which I am trying to tease out and shape, is that what is usually called “self advocacy” and what is generally understood to be “disability activism” are of course related, but call for very different strategies. Approaches that can be smart, ethical, and effective for self-advocacy in your personal life are not always right or successful for larger-scale systemic advocacy on disability issues. And vice versa, maybe. I hinted at this in a post from last month, but I want to explore it in more depth, with more specifics.

I hope to have more to say on Friday, or maybe the weekend. In the meantime, feel free to use the comments to suggest examples.

Disability Thought Of The Week: Judging Activisms

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Can We Stop Arguing About the “Right Way” to Be a Disability Activist?
Andrew Pulrang, Rooted In Rights - May 4, 2018

People seem to like this piece I wrote for Rooted In Rights. TL;DLR … We should stop judging others, and ourselves, for which modes of disability activism they / we choose.

I may write what would probably be a more controversial followup on how we think about the content of disability activism, as distinct from methods. Should we be as open and accepting of all disability activism goals as we are of how and where to pursue them? What do we do when a disabled person does disability activism activities in pursuit of, say, medical research, or a personal advocacy goal, or to keep a sheltered workshop open? Does it matter what “we” think?

Disability & Food: First Survey Results

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On February 18, I posted a survey looking for data on the shopping and eating practices of disabled people ... or at any rate, of disabled people who read disability blogs. Today I'm going to share preliminary results from the 52 people who have responded so far. I would like to get more responses before commenting, so I am leaving the survey open for another week.

You can take the survey by clicking here.

If you have already done the survey, please share it with other disabled people you know, on other platforms.

Next weekend, I'll close the survey, post the final results, write a little about why I'm interested in food and disability, and offer some notes ... maybe conclusions, too ... based on the data and comments.

Here are the results so far:

Respondent comments:

What I can and can't eat, and thus how my food must be processed and prepared, is a huge part of my disability. I eat "frozen dinners" and packets of things I can heat in the microwave, but they all have to be prepared in my home from scratch, a few exceptions of specific brands of things in cans or boxes.

Only recently started cooking at home so much--started treatment for my undiagnosed ADHD in November at age 45. Now I can more easily plan to cook and get the right items purchased in advance, and make time to prepare it. I've wasted a lot of emotions and food over the years on good intentions and poor implementation.

Refrigerated, microwaveable meals Microwaveable boxed pantry meals

i mostly eat food that i get from the grocery store and that comes out of the package edible... like bread. or fruit. everything else, i cannot prepare

I get the majority of my groceries via grocery delivery service. I assumed that counts as home delivery but wasn't sure. That being said, while I do my own cooking, my mobility tends to dictate how elaborate my meal will be. Not that my meals are really that elaborate lol but how much spoon / labor will be involved. For an example, my kitchen is not fully wheelchair accessible, and so if I want to reach certain cabinets etc., I need to be able to get up out of my chair. So there are times, I just don't have access to certain foods in my kitchen and will eat whatever I can reach. For this reason, I very very rarely use the stove. Me and the oven are BFFs though lol

Respondent comments:

Staff take him shopping

I live in a city with multiple food coops. I shop there most often, but no one store carries all the foods I need in a week. Food shopping involves stops at two to four stores a trip. I do not drive and public transport is inaccessible to me. I need rides for all of this.

Respondent comments:

not sure where autism goes in here. also chronic illnesses

Chronic pain/traumatic brain injury

Autistic, and irritable Bowel Syndrome and PCOS. Not a fun combo.

Chronic illness- asthma

Medical conditions

Type 1 diabetes

Disability Podcasts ... Updated

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It’s been awhile since I posted about disability podcasting. That’s partially because there is still surprisingly little of it out there. What I mean by “little of it out there” is that there are few podcasts by disabled people posting episodes regularly. My own podcast’s checkered, inconsistent history is a good example. I also get the feeling that the same creative impulse that prompts people to do audio podcasts is being channeled more into making YouTube videos. Still, there are a couple of newish disability-themed podcasts I listen to that are worth your time.

The Accessible Stall

Emily Ladau and Kyle Khachadurian are friends who have different disabilities, and subtly different ways of thinking about disability and disability issues. Actually, sometimes the difference isn’t subtle, though their disagreements never become unfriendly. Basically, this is the podcast to listen to if you want to explore the pros and cons of different schools of thought on disability. It sounds serious, and it is in intent, but the dialog itself is fun and surprisingly light. This is a great podcast for anyone in the disability community, but maybe especially for people just beginning to think about disability issues in a deeper way.

In Sickness + Health

I have only just started digging into this podcast’s back catalog, but I’m pretty sure I’m going to learn at lot from it. In Sickness + Health explores what you might call the chronic illness sector of the broader disability community, focusing on how we actually think about and relate to our bodies when they don’t work as designed … or when they actively rebel against us. I tend to gravitate more towards the social, political, and practical aspects of disability culture, yet my own disabilities very much fit into the more medically involved chronic illness zone. So this podcast is probably perfect for me. At the same time, it also seems to do a good job of connecting the very personal physical and emotional aspects of disability with the social and political dimension. Basically, I am very intrigued. I’ll be listening more in the near future.

Note: I am also adding this as an update to a post I did back in August, 2014: Disability Podcasts.

The Tyrion Test, Updated

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Earlier today, someone unearthed and tweeted my old blog post about what I called the Tyrion Test, a disability version of the Bechtel Test. I named it the Tyrion Test after Tyrion Lannister from Game Of Thrones, one of the best disabled characters I have ever seen. After reviewing my version, I decided it’s time to try again, and offer a simpler test of disability depictions in popular culture, one that is a closer parallel with the original.

The Bechdel Test is a semi-famous “test” to evaluate how women are depicted in popular culture … TV shows, movies, books, and the like. To recap, a piece of culture “passes” the Bechtel Test if it:

1) Features at least two women, who
2) Talk to each other,
3) About something other than a man.

So, although I still endorse my original formula, I’d like to offer a simpler one:

A disability depiction passes the Tyrion Test if it:

1) Features two or more disabled characters, who
2) Talk to each other,
3) About something other than their disabilities.

I still think it also matters whether disabled characters have real agency, whether or not they are fully developed, and what kind of role they play in their stories. I also think it’s good when writers avoid leaning on a few tired disability tropes and stereotypes. But maybe this simpler test is enough. It's certainly easier to remember and apply.

What do you think? Are there other criteria you use to evaluate disabled characters and disability-based stories in popular culture? How do disabled characters in pop culture stand up to this test or others? Let me know in the comments!

Return Of The "Pool Noodle?"

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Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

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Throwback Thursday

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Two years ago in Disability Thinking: Remembering The Pakleds.

I recently re-watched "Samaritan Snare.”

Ooof, it’s pretty awful. I think the writers meant well. I think they were trying to make some kind of bland point about underestimating people you assume are weak or incapable. But the portrayal is so insulting that any good is undone. Ultimately, you have a fictional alien species transparently crafted to display stereotypes of cognitive impairment. You have lines clearly intended to be mildly comical. You have our good Starfleet officers responding with a veneer of patience, just barely hiding irritation at having to deal with these obviously stupid humanoids. Hardee har, har! You have to work awfully hard to pull a positive message out of all that. Just check out the comments to the video below.

The episode is worth watching though, if only to be reminded that good intentions don’t guarantee good disability depictions.



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#DisabilityStories

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Erin Blasco - July 14, 2015

Blue box that says “#DisabilityStories July 15, 20150” with a pointing hand symbol.

I will be spending most of the day dipping in and out of this huge Twitter event, marking the 25th Anniversary of the Americans with Disabilities Act. It’s organized by the National Museum of American History. Click the link above for a good summary of what it’s all about and how to participate. Click here to see a schedule for the day.

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Airline Incident Followup

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Autistic Self Advocacy Network - May 21, 2015

Last week’s discussion about the autistic teenager and her family being kicked off an airliner frustrated me on two levels.

First there were the commenters who seemed to mold and manipulate this particular  incident into their preconceived ideas about overly-demanding special needs parents inconveniencing everyone else in pursuit of unrealistic accommodations for an annoying child. The fact that the flight attendants ended up providing what the autistic teen wanted in the first place, which means they could have done it right away without argument, didn’t matter to people intent on making the obvious point that an airline can’t meet every conceivable need.

Second, nobody seemed to share my concern about the teenager’s mother, (who I think was right in her advocacy), using negative stereotypes of autism to try to get what she was after. On reflection, I think she may not have been as insulting and harmful as it sounded.

Throughout the dialog … in news articles, blogs, Twitter, and Facebook … I kept wondering what the Autistic Self Advocacy Network would think. I am pleased to see that once again, ASAN has presented an issue in a strongly worded but well-reasoned press release centered on a useful response … asking the Department of Transportation for clarification of the applicable law, the Air Carrier Access Act. This is more than expressing outrage. It might actually help.

It can’t be said enough. The Autistic Self Advocacy Network is the most articulate, effective, and authentic voice for autistic people in the country, possibly the world. If you have any interest in autism from any angle and aren’t familiar with ASAN’s work, you are missing out.

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Apple Followups

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Photo of a vintage Apple Macintosh computer
A couple of months ago I blogged about possible disability uses for the new Apple Watch. It looks like folks are finding unexpected uses already:

Max Plenke, News.Mic - May 4, 2015

Also of note, well-deserved recognition for Apple’s VoiceOver, just one of the many accessibility features installed standard in all Apple devices.

Buster Hein, Cult Of Mac - May 6, 2015

I’m honestly not on Apple’s payroll. It’s just that I’ve been using Apple things since the late ‘80s, and I’ve met many disabled people who swear by their accessibility tools.

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