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.

Inspiration Without Inspiration Porn

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Green highway-style road sign reading InspirationFirst read this …

Charles Roberts, America News - November 11, 2015

… and marvel at the stunning insensitivity it took for this woman to congratulate herself for doing a good deed, after “stubbornly” overruling a disabled veteran who said several times he didn’t need or want her help, and forcibly helping him anyway. It takes a lot for a news item to stun and offend me personally, but this one had me swearing aloud to my iPhone.

Now read Dominick Evans’ terrific blog post about the story:

Dominick Evans - December 16, 2015

Yes, it’s “Inspiration Porn” again. Why are we so bothered by people who are just trying to be kind? Why won’t we leave it alone?

Because it keeps happening, it’s genuinely disturbing, and people keep finding ways to make it even worse.

Still, I hate being a sourpuss. Just because I loathe sentimentality, doesn’t mean that all sentiment is wrong. Just because I don’t exist for your inspiration, doesn’t mean it’s wrong to feel inspired by whatever happens to inspire you. The alternative to Inspiration Porn isn’t gross negligence, like stepping over a disabled man choking to death in a McDonalds. There are decent, acceptable ways to be decent, kind, and helpful to disabled people.

Can you do a "good deed" for a disabled person without offending them?

Is it possible to do inspirational stories about disabled people without being smarmy and condescending?

 Yes and yes!

First ask, "Can I help you?", and then respect the answer. And if the answer is "No thank you," or even just plain "NO!", don't take it personally. How each disabled person answers depends on many factors. I’m not often asked if I need help. When I am, I usually say, “No thank you, I’ve got it” because I’ve got it. Sometimes I say, “No thanks,” then pause a moment, survey my situation, and say, “Actually, yeah, that would be great, could you …?” and then I tell the person exactly how they can help. Sometimes, I say, “Yup!” right away, and hand them the whatever that I’m trying to carry while inching my way down some stairs. The point is, it’s fine to ask, I call the play, and the only really offensive thing is if you don’t listen to my answer.

What about pictorial depictions of bravery, kindness, perseverance, inspiration, like Facebook memes or YouTube videos?

Never snap a photo, never shoot a video about a disabled person without the disabled person's consent. It doesn’t matter that you admire the thing you are depicting. It doesn’t matter that you do it to make people happy or uplift them, or teach them a lesson about gratitude. What matters is the result, and if the disabled person isn't on board with the situation or being used in your little morality play, any good you think you’re doing will be undone.

Above all, make sure the disabled person has a voice in the story or scenario or whatever it is you’re focused on. If you write about an actual, named, identifiable disabled person, ask the disabled person to comment and include what they say. You’ll discover pretty quickly whether they think the situation is amazing and remarkable, or pretty standard and nothing to crow about. And that should be your guide on how to think about it, too. Follow the disability rights movement motto: "Nothing about us without us."

If you focus on a disabled person overcoming adversity, ask questions about that adversity and why it is there. Stories of individual courage and character are uplifting, but disability discrimination and hardships don't happen in a vacuum. The problems disabled people face usually come from or are made worse by the bad choices and neglect of actual people and institutions that should be challenged. Battling institutional ableism doesn’t translate so easily to cute Facebook posts that make people go, “Awww!” but that’s part of the point. And anyway, fighting discrimination IS inspiring!

Finally, remember that not every disabled person craves "going viral." Most disabled people just want to get on with life. Believe it or not, many of us strongly prefer anonymity! Most importantly, we all want to be treated as people, with three full dimensions, unique points of view, and complex feelings, not cardboard cutouts employed to symbolize abstract values, or tools to make you feel swell and become Internet-famous.

But what if I can’t follow all these conditions and still tell my story?

Simple … just don’t tell the story! Sometimes, a little restraint is the best, most uplifting gift of all.

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Remembering Stella Young

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Stella Young died one year ago today. She is still my favorite well-known disability activist, writer, and role-model, and I miss her voice and her “cracking brain” so much.

I wanted so much to re-post some amazing videos from Stella’s Memorial Service in Melbourne, Australia, but it turns out the Australian Broadcasting Corporation owns those videos, and though they are still on YouTube, they can’t be viewed here in the United States. What the hell?! That really pisses me off!

Instead, I’ll share my two favorite pieces of Stella’s writing:



Her TED Talk on “Inspiration Porn” is essential:


I would so love to hear what Stella would have to say about Kylie Jenner.

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Invalid Corps Kickstarter

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Photo of a Civil War era Union Army button, brass colored, with engraving of an eagle
Hello, I'm back from my blogging break.

I have never done this before on my blog, and I probably won't do it often, but I strongly urge readers to support a Kickstarter fund raising campaign for a documentary film about the Civil War Invalid Corps and the Battle of Fort Stevens. This filmmaker is Day Al-Mohammed, who is well known in the disability culture and activist community. I know her through the disability blogging and social media community. Day works in Washington, DC as a policy analyst, so this project seems like a personal passion for her.

The Invalid Corps was a section of the Union Army in the Civil War, manned by wounded soldiers. These are soldiers who chose to keep serving and fighting, even though they had permanent disabilities like amputations, blindness, and what we would today call Post Traumatic Stress Disorder.

Let me quote Day on why this subject and project are important to her:

"Uncovering these heroes is a personal passion of mine. As a woman with a disability, and as a volunteer with the US Coast Guard Auxiliary, I feel a kinship with their need to serve and their desire to do what they could. After more than 15 years working on disability policy issues and working with youth with disabilities, I have seen how important it is to see people like yourself - models and mentors. Disability doesn't just exist today, but existed in the past."

"This is a lost history of men who sacrificed for their country and then chose to remain on duty; of men who chose to continue to serve with a disability. It is a story that should be told, not just from a historical standpoint but to understand and recognize the efforts of men and women in uniform today."

This project pushes all of my buttons, in a good way. I was a history major in college, and I am still a history buff today. In fact, the Civil War is one of my favorite subjects. And like Day, I am disabled, so this project has personal, crossover appeal for me.

I am making a pledge today. I hope lots of readers will, too, and spread the word, especially among your friends with disabilities and their families. As you probably know, you don't have to pledge a lot to make a difference. But do it now, because there are only 14 days left to go in the campaign, and the way Kickstarter works, they only get the money if they reach their $7,776 goal.


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It's Refreshing

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Illustration of a white 3-d stick figure sitting in a wheelchair at the bottom of a flight of stairs
Jeffrey Pfeffer, Fortune - July 14, 2015

Here we have a rare and refreshing thing. A business expert writes an article advocating stronger enforcement of disability rights laws, and it is published on a business magazine’s website.

What’s more, the writer, a non-disabled person who gained his initial insight through a temporary impairment, makes a stronger, simpler, more insistent case for disability rights laws than a lot of disability journalists, bloggers, and activists. Well, better than me anyway. I tend to hedge my advocacy posts with all sorts of caveats and acknowledgements of opposing views, something I think a lot of us are conditioned to do.

We have to keep reassuring the “average reader” that we are rational and realistic. We know our issues rarely make it to the front burner. We know “most people” don’t really understand, so they can’t be blamed. We have learned to live with unnecessary injustice. We’re not happy about it, but we’re not surprised.

Maybe that’s why laypeople and newcomers to disability issues can sometimes speak with a clearer, louder voice. What they lack in authority they make up for in fervor and sheer astonishment. They see, more clearly and emotionally that than some veterans of the struggle, that disability discrimination and inaccessibility at this point isn't just wrong, it is surprising, and it's bizarre.

It doesn't happen that often, but when a non-disabled journalist does a disability story and instead of crying tears of pity, instead asks, basically, "Why the hell are things still so shitty for these people?"... well, it's refreshing.

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Ideas, Not Mandates

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Two white 3-d stick figures shaking hands, each out of a laptop screen
So, first I read this blog post by Rob J. Quinn:

Rob J. Quinn, I’m Not Here To Inspire You - June 29, 2015

"But as I peruse Twitter and the blogs of people who specifically don the cap of advocate, I recently came across the term ableism. It’s apparently our version of racism, and to my surprise the term has been around for a while. And I wonder, as we tweet and write at the top of our lungs about the injustice that people with disabilities often face—the latest issue seemingly piggybacking off he Supreme Court ruling giving homosexuals the right to marry to discuss the “marriage penalty” some people with disabilities face in losing benefits due to a spouse’s income—how this post will be viewed."

"Am I being ableist against my own community for pining to be able-bodied? Am I rejecting my own identity?"

I started thinking about responding to this piece, mostly to reassure Rob and other fellow disabled people that we all have moments and days when we are sick of being disabled. And I’m not talking just about being sick of the inaccessibility and ableism that make us more disabled … though there is that … but also being sick of our own, actual physical or mental conditions.

Then, just a day later, I ran across a post on Tumblr, a reblog by Wheelchair Problems of a post by Fuckyoumyalgia:

"all of these are perfectly valid relationships to have w/ your disability. none of them are wrong or right or inherently healthy or unhealthy. they just are what they are. if you wanna improve your relationship w/ your disability that’s fine. if you don’t that’s fine too."

"the only thing that’s not fine is telling someone that their relationship w/ their own disability is wrong"

Bingo.

The thing is, it’s possible take some of the most commonly talked about tenets of “disability culture” as mandated beliefs or litmus tests. But really they are just ideas meant to break people out of far more common and truly self-destructive ideas people have about disability.

Too many disabled people think as Rob did about his disability, but all the time, not just for a moment or a day. Too many disabled people view accessibility as a special benefit and accommodation as some kind of favor. Too many disabled people internalize low expectations for themselves and spend their whole lives wishing they were normal.

That’s partly why disabled activists and Twitterers hammer on self-acceptance, double down on not wanting to be “cured”, and “call out” ableist language and “inspiration porn.” There are directions in disability thought that seem to be more productive and helpful for disabled people in the long run, and they mostly revolve around self-acceptance and asserting our rights. That doesn’t mean we are all obligated to feel proud, empowered, and bad-ass 24/7.

Because as the Tumblr post suggests, two other pillars of disability culture are personal choice and no longer allowing ourselves to be shamed. It is important to promote emerging progressive ideas about disability, if for no other reason than to make sure disabled people know there are many ways to think about their disabilities. But it will never do for us to tell each other that any of us are doing disability wrong.

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Catching Up On "Ouch"

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BBC Ouch: Disability Talk logo
A couple of evenings ago, I decided to catch up on a backlog of podcast episodes of Ouch: Disability Talk, the BBC's program dedicated to disability issues and culture. I keep forgetting how good the show is.

The hosts seem to have similar beliefs about disability as the activist disability bloggers I read, but they sound like they don't have to try as hard to express those beliefs.

They are casual and breezy ... aware, but not angry.

They are plain spoken, and steer clear of insider jargon.

They don't reject so-called Political Correctness, but they seem less anxious about it than one might expect.

Ouch gives equal voice to a broad spectrum of disabled people, including some with beliefs and ways of talking about disability that I don't like, that make me uncomfortable. Everyone gets a fair chance to say their piece. Meanwhile, the hosts ask probing questions, but don't pass judgment.

Of course they are British, and I like the way they say things, one minute funny:
"I was like, shuffling around like a granny, even more than I usually do."
The next, insightful:
“I think it’s true that people do want to get diversity. But it’s almost as if people want the “easy” disabilities ... I put that in very marked quotation marks … but you know they don’t want to deal with complex disabilities where lots of changes have to be made."
Ouch's hosts and guests often state flat-out some things we often think, but struggle to express:
Interviewer Kate Monaghan: "Surely all parents just want the best for their child?"
Guest Tracey Abbott: "Ah, all parents want their child to be as safe as they can be, and happy. That doesn’t necessarily equate to them going out and getting a job."
It's worth noting that later in the same show, Ms. Abbott says some pretty ignorant, borderline hateful things about what does and doesn't constitute a "real disability," which prompted a good deal of polite but sharp discussion among the hosts and guests.

And who could resist a show on disability with episode titles like:

“You walk funny"
Losing a leg, and being mugged
Who can use accessible loos?

I will be listening to Ouch more regularly.

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A Must Read on Two Kinds Of Disabled People

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Close up picture of a computer keyboard key with a thumbs up symbol on it
Cara Liebowitz, That Crazy Crippled Chick - June 17, 2015

This article is way too great to leave for my weekend Weekly Reading List post.

First of all, I am “Ugly Disabled” as Cara defines it here. Which is to say that because of my disabilities, I mostly don't fit mainstream standards of physical attractiveness. Which is not to say that I hate how I look, or that there’s nothing physically attractive about me. It’s just that, like Cara and so many other disabled people, I don’t look “normal except for …” So, I relate to this very personally. I get where she’s coming from.

Second, I wholeheartedly second the part about how people who are “Pretty Disabled” seem to have a bit of a social edge on us, even in a community that’s all about inclusion and equality. When I first started working in Independent Living, and for the first time found myself in rooms filled with fellow disabled people of all kinds, I admired the ones who looked really slick and put-together in their cool, quiet, lightweight manual wheelchairs. And, I am ashamed to say, I felt less than fully comfortable around the disabled people "who rock and flap and whose speech is sometimes not fluent.” I got over both the hero-worship and the internalized ableism ... mostly ... but the distinctions are still there in my mind.

Finally, I would like to point out how beautifully and precisely Cara describes her disability, in a neutral, non-melodramatic tone, and with concrete terms anyone can understand. I don’t know whether it was therapeutic or revelatory for her, but I have sometimes found it helpful to write a description like this of my own disabilities. I wonder if that would be a good exercise for teenagers growing up with disabilities, to help them explore what disability means to them, as opposed to whatever they have been taught to think about it?

Please do follow the link and read the post. It is important and a pleasure to read.


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Weekly Reading List

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Illustration of a stack of books of different colors.
A collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”

I had a busy week of Actual Life activities, so my blogging, tweeting, and browsing were on the low side.

Olivia Shivas, AttitudeLive - June 5, 2015\

I have almost reached the saturation point on discussing “Inspiration Porn,” and I’m not sure how effective we are at explaining it to he average non-disabled observer. This article does a pretty good job of it, focusing on the idea that disabled people simply being in media isn’t enough. It makes a difference how we appear and what the messages are.

Rob Stein, National Public Radio - June 9, 2015

This kind of situation complicates how many disabled people view advances in technology and treatment of disabilities. A better prosthetic hand, or a more effective hand transplant, can be a real tool for greater independence. On the other hand, these improvements are too often seen and portrayed as cure-alls for stigma and low self-esteem, rather than actual impairments. In any case, it is heartbreaking to read another story of a disabled person growing up with such intense self-loathing. I know it’s very common, and it deserves to be acknowledged and discussed, but somehow these articles rarely question the stigma and loathing themselves. They take for granted that the disabilities are, objectively, horrible and loathsome. How about an article about a kid born without a hand who grows up hating how he looks, and later accepting it and building self-worth … without an awesome new device or miracle surgery?

Lydia DePillis, Washington Post - June 10, 2015

Alice Wong, Making Contact - June 11, 2015

Here are two very different articles, covering the same basic topic from two very different angles. It’s interesting how disable people who rely for everyday assistance on paid caregivers have a much more detailed understanding of the ins and outs and, the ethics and the strategies of hiring and managing “domestic employees.” Granted, most disabled people don’t have much say in what their aides are paid, but they can decide on other ways to treat them with respect and show appreciation. And then there are the disabled people and families who do hire care providers with their own money. It is a relationship where the rules, both formal and informal, are still forming, still in flux.

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Weekly Reading List

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Illustration of a colorful stack of books

A collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into the week's “big stories.”

I usually post this list on Sundays. Sorry it’s late!

Joanna Rothkopf, Salon.com - June 3, 2015

I am completely comfortable saying that I oppose the legalization of euthanasia or assisted suicide. It is bad, dangerous policy, with great potential for abuse … where abuse means involuntary death of human beings. The enduring problem with this issue is that almost everyone else in the world other than significantly disabled people see this entirely as an issue of personal choice. Therefore, many disabled people say that they are in favor, at least for themselves, as Stephen Hawking does here. I think it is also worth noting that while Prof. Hawking is a brilliant physicist, he’s not necessarily any more savvy about social policy than anyone else. Some people have minds for politics and policy, some don’t.

Honestly, there is no theme - May 7, 2015

This is a lovely, simple answer to a particular form of “Inspiration Porn,” the kind surrounding proms and dating and non-disabled people in relationships with disabled people. It’s also good once in awhile to hear really great stuff about disability from people without disabilities, and who are not experts with credentials. It’s a valuable reminder that some non-disabled people don’t need to be “educated” … they just get it on their own.

John Meagher, The Montreal Gazette - June 6, 2015

The language in this article is horrible. The story itself isn’t bad. My question is, how do journalists determine what kinds of personal stories about disabled people are newsworthy? Not to take anything away from this new graduate, but it isn’t nearly as rare and remarkable for severely disabled people to graduate from high school as it used to be. At some point, won’t it become the expected thing, praiseworthy, but not enough for a big-city newspaper article?

Cripperella - June 2, 2015

I occasionally have to contend with people not just offering, but pushing help on me. Trust me, and trust “Cripperella,” it’s not always enough to just be polite in return. Some Good Samaritans need to be told … in words, flat, curt voices, or glares … to back off.

Mobility International USA - May 28, 2015

Here is a “feel good” disability story that works, that isn’t gross and sickly sweet. Just report the facts, and then let disabled people say what those facts mean to them.

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