Inspiration Without Inspiration Porn

First read this …

Young Woman's Treatment Of Disabled Vet At Walmart Goes Viral (Photos)

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:

Inspiration Porn Is Out Of Control

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

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:

A letter to my younger self

Stella Young’s letter to herself at 80 years old

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

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.

Click here to make a Kickstarter pledge.

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It's Refreshing

Why disability rights is everyone's business

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

So, first I read this blog post by Rob J. Quinn:

A Moment of Not Dealing with Disability

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"

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

On Being "Ugly Disabled"

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.

Via the Disability Visibility Project Facebook Page.

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Weekly Reading List

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.

Opinion: Is Disability News Doing More Harm Than Good?

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.

The Hard Work Of Waiting For A Hand Transplant

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?

How to pay the help

Lydia DePillis, Washington Post - June 10, 2015

Alice Wong investigates interdependence between the disability and caregiver communities

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

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!

Stephen Hawking: “I would consider assisted suicide” in certain circumstances

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.

It’s just a wheelchair

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.

High school graduation a triumph for John Rennie's Bradley Heaven

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?

I Said No Thank You

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.

Exchange Students with Disabilities Return Home

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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Weekly Reading List

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.”

Here is this week’s list:

Hawking’s fear cuts pose threat for disabled students

Patrick Sawer, The Telegraph - May 30, 2015

The article itself is a mess, (lots of bad disability terminology), but it is encouraging to see Stephen Hawking connect the dots between the supports he has enjoyed that helped him succeed, and the possible loss of support for disabled students today, due to expected budget cuts. People like to talk about what an amazing man he is to be as vital as he is with advanced ALS. By any measure he does have an extraordinary mind. But an important key to Hawking’s success is that he has had supportive help, funding, and technology that a lot of people find it hard or impossible to access. And something as simple as an election result can make it even harder.

Wanted by the BBC: a new weather presenter who 'must be disabled'

Camilla Turner, The Telegraph - May 28, 2015

I doubt very much that the BBC will hire truly unqualified weather presenters any time soon, disability or no. As they told the Telegraph’s reporter, they are offering a training opportunity only, not a guaranteed job. The problem is that the network specified it’s for disabled people, and that they are offering the training as part of an organized effort to increase the number of disabled people on BBC TV shows. A few thoughts here:

- It would be more helpful to offer training and internships throughout the BBC’s national and regional news operations, both in front of the camera and behind, not just the tiny niche portion of being a “weather presenter.” There can’t be more than a few dozen in the whole of the United Kingdom.

- It might work better and be less controversial for the BBC to fund disabled student recruitment at UK university media departments.

- The tone of the ad is so flippant, it’s as if they are offering free carnival tickets to disabled people, not career training. By making it sound like a job people can just try out on a lark, it devalues the whole thing, like it’s one of those foolproof “work from home” schemes.

I am beginning to realize that straightforward ableism is often less painful to see than well-meaning but ham-fisted do-gooderism by non-disabled people. It makes one wonder if they really care whether their efforts actually work or not.

On the accumulation of well-meant microagressions

Haddayr Copley-Woods, Fiction, Essays, Geekery - May 29, 2015

This is a very good first-person account that tries to explain why disabled people sometimes get angry at people who are trying to be nice to us. For me, it’s all about tone of voice. I don’t think I am every really bothered by unsolicited, unwanted offers of help. It only becomes a “microaggression” when it becomes aggressive, defensive, or condescending.

Forced to live like an old person: young people with disabilities trapped in aged care

Patrick Abboud, The Feed - May 27, 2015

It’s interesting to see that in Australia, if this article describes the situation accurately, the big barrier to getting out of nursing homes is lack of “affordable accessible housing.” That is often the problem here in the U.S., too, but here I think it’s even more of a problem getting personal care, reliably and in the right quantity. Nevertheless, this article describes very well just how wrong it is for disabled people to be forced by external circumstances … not by their disabilities … to live in nursing homes. I only have one quibble. The article keeps saying it’s terrible to make young people “live like an old person.” The thing is, it’s just as bad to make old people live like an old person, if that means shipping them off to a nursing home.

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Signal Boost: "Our ADA Stories"

The Disability Visibility Project is partnering with the National Council on Independent Living for a social media campaign called #OurADAStories.

From the announcement by the Disability Visibility Project:

Purpose

To celebrate the rich diversity of the disability community and the impact of the ADA on our everyday lives and activities.

How To Participate

1) Tweet your story! It can be a written message, selfie or a photo of things you see in your community that relates to disability rights. Be sure use the hashtags #OurADAStories and #ADA25 in any tweets! Follow @DisVisibility for updates.

2) Post an image or written message to the Disability Visibility Project’s Facebook group (you have to join first). If you post an image to this group, please include a written description of your image.

Click here to read more about the campaign.

The idea is to share your personal thoughts, experiences, and feelings about the Americans with Disabilities Act … in words and / or pictures. How has it affected your life? What are the law’s strengths and weaknesses? How has the ADA made your community better for people with disabilities?

This initiative will run from now until July 26, 2015 … the 25th Anniversary of the Americans with Disabilities Act.

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Weekly Reading List

This is 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.”

Here is this week’s reading list:

#StellasChallenge launches at TEDxSydney 2015

TEDxSydney - May 21, 2015

TEDx #StellasChallenge campaign using Stella Young angers disability sector

Melissa Davey, The Guardian - May 22, 2015

To be honest, I’m not entirely sure what happened here, which is why I haven’t written about it until now. From what I can tell, TEDxSydney, one of the loose affiliates of the TED Conference organization, decided to start a rather vague “media campaign” to honor the late Stella Young, the disability activist and all-around awesome woman who came to wider world attention for her TEDxSydney presentation a couple of years ago. It seems like disability activists, including people who loved Stella and her militancy, were upset by a combination of things, including a suggested starter question meant to help non-disabled people break the ice in starting discussions with disabled people, presumably to foster dialog and understanding or something. The question was something like, “Tell me about your disability …”

That question, and the whole tenor of the project, seemed very airy and abstract. Now Stella was an intellectual, so she was well acquainted with philosophies and social theories, but she was also very down-to-earth, businesslike, and very clear that most of disabled peoples’ problems stem from very real, concrete barriers in architecture and policies, not just “attitudes.” I think that’s why so many people got upset. It’s good to see TEDx responding, though the tone of their response seems equally guarded and bureaucratic to me, again lacking any solid point of view that can be pinned down. To be fair, these problems are perhaps to be expected from a TED initiative. TED talks are occasionally amazing, but just as often they are smug, self-congratulatory, and pandering to a certain sort of privileged, progressive, but apolitical audience that likes to feel like having a deep, meaningful conversation is the same thing as doing something. I’m a bit like that myself, but I see it as one of my weaknesses, not a strength.

Overcoming Overcoming

Smart Ass Cripple - May 22, 2015

Mike Ervin’s take on “overcoming.” His Smart Ass Cripple blog is always worth reading.

Disability as metaphor, and why you shouldn’t

s.e. smith, this ain’t liven’ - May 22, 2015

An excellent run-down of the most common ways disability is used, and abused, in literature and popular culture. s.e. smith suggests maybe writers might try a bit more creativity.

Disability rights activists seek higher wages for attendants

Nicole Cobler, San Antonio Express-News - May 19, 2015

Apart from the fact that home care workers are, usually, woefully underpaid, it’s good to see the people they work for fighting for them to be paid more. The problem is that home care users don’t have any real say in wages. It’s usually state Medicaid programs that pay. So the best home care users can do is organize, lobby, and protest their legislatures, as they did this week in Texas.

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Weekly Reading List

This is 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 whatever the “big stories” are each week.

Here is this week’s reading list:

Self-Identifying as Disabled

Tonia Says - May 6, 2015

It’s always good to be reminded by an actual disabled person why we use the words we do to describe ourselves. There are all kinds of intellectual arguments about this, but we feel personally about it, too. It’s not all a political stance.

Enough With “I Don’t Want Them Labeled.”

Mama Fry, Scary Mommy (date unknown)

Another angle on labeling, this time from a parent of a disabled child. She gets at the issue that bothers me about labeling, which is a seeming confusion between the label … the word … and the thing itself. As if the label makes the thing real, when really the label is just a way to describe something that already exists and is best recognized.

To the People Who Stare at My Kid: Your Confused Face Is an Ugly Face

Laurie Arnold, The Mighty - May 14, 2015

This is kind of a blunt, but also refreshing description of how it feels to be gawked at. Or, in this case, how it feels for parents to see their disabled kids gawked at.

Beyond My Wildest Dreams: Thoughts As I Graduate From College

The Squeaky Wheelchair - May 14, 2015

This is about college, obviously, but also a reminder of what it takes for people with significant physical disabilities to function independently. It’s a lot about management skills.

Why disability rights advocates oppose assisted suicide (Commentary)

Diane Coleman, Syracuse.com - May 11, 2015

The core disability rights argument against legalized assisted suicide. It’s not about religion or morality, it’s entirely practical … about bad policy more than bad behavior.

Think Twice Before Calling the Cops on the Mentally Ill

Conor Friendersdorf, The Atlantic - May 15, 2015

The former Executive Director in me cringed a bit while reading about a mental health counselor’s somewhat unauthorized practices, though they seem to be right.

The debate over prescription painkillers, explained

German Lopez, Vox.com - May 16, 2015

I appreciated reading the “other side” of this issue … the medical reasons why higher-octane painkillers can bad for you medically, not just morally or legally. Still, even those arguments seemed a bit weak to me, kind of circumstantial. The meds themselves seem to be no worse than any other, as long as they are used responsibly. And pain management is a big, big issue for many disabled people.

Report: White House Officials Deliberately Hid FDR’s Mechanical Spider Legs From Public

The Onion - May 15, 2015

“It’s important to remember that in those days, the need to rely on eight mechanical spider legs was perceived as a weakness,” said Elmore, citing a lack of education about the issue and the fact that most Americans simply chose not to talk about it."

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Quote

I’ve been away from Tumblr too long.

When I started disability blogging 2 years ago, I also started reading disability-related Tumblr blogs more or less daily. It helped me get a feel for, I suppose, a younger, more spirited, less careful community of disabled people. I carried on with regular Tumblr reading until maybe 6 months ago, and then for some reason fell out of the habit. I kept posting to my own Tumblr, but only rarely latched onto or “liked” other stuff on Tumblr.

I found the following this afternoon, a reblog by WheelieWifee, of an April post at Words N Stuff:

1. Ignore their stares. You owe no one an explanation.

2. If they are rude, be witty. If they are rude, be sarcastic. If they are rude, be ruder.

3. Never sacrifice yourself for their approval. You don’t need it.

4. Laugh in the faces of those who call you “faker,” those who call you “scammer,” those who call you “liar.”

5. Walk as slowly as you like. Let them sigh loudly behind you - you are doing nothing wrong.

6. If they’re in your space, tell them. If they don’t move, make them.

7. Don’t feel obligated to “look sick.” Don’t feel obligated to “look well.” Don’t feel obligated to look any which way except how you do right now.

8. Use their words against them. Take the ones they hurl at you and embrace them. They are yours now.

9. Flaunt your “imperfections.” Show off the things they hate. Put stickers on your braces and tattoo the hip that never stays in place. Don’t let them ignore you. Don’t let their eyes slide over you.

10. If they hurt you, if they slip past your defenses and under your skin, if their ignorance is more than you can handle. If they hurt you. Don’t let them know.

cripple punk

april 26/30//q.e.l.//

I don’t agree with every bit of it. For instance, I think that if “they hurt you,” it’s sometimes important to “let them know.” But it’s all good stuff to think about. It’s the sort of thing disabled people who are still struggling with their disabilities and internalized ableism need to read. I’m talking about youth with disabilities, and people of any age dealing with new disabilities. Parents and families should read it, too. It’s the nuts and bolts of disability pride, in very concrete, non-theoretical words.

Must not forget Tumblr.

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Weekly Reading List

I have decided to start another weekly posting tradition, to go with the "Weekly Wrap-Up" and "Tweets Of The Week." I’ll call it "Weekly Reading List.” Each Sunday I will post links to disability-related articles I read over the previous week, but didn’t have occasion to post about. I’ll keep the comments to a minimum, and the list size manageable. I hope you all enjoy the new feature.

Here is this week’s list:

“You’re So Inspirational”: Disability and the Overall Culture of Inspiration

Jason Harris, Jason’s Connection - May 7, 2015

I like how Jason takes a broader view of what “inspirational” actually means and why it seems to be so popular for all sorts of topics, not just disability.

Horrified mum who parked in Tesco disabled bay found this note on her car windscreen

David Keane, Daily Mirror - May 6, 2015

There is something about accessible parking that makes it grounds for confrontations that are all out of proportion to it’s actual importance.

How to Use the End of the Telethon to Teach Students to Cover Disability Rights

Beth Haller, PBS Media Shift - May 8, 2015

The end of the moldy, smelly old MDA Telethon as a teachable moment for journalists.

Living, and Dying, at Home

Alana Semuels, The Atlantic - May 1, 2015

It’s good to see a serious article on long term care, specifically non-institutional, in a mainstream publication.

Burlington's Karim aims for 2016 Paralympic Games

Alex Abrami, Burlington Free Press - May 9, 2015

I like the tone of this fairly by-the-numbers disabled athlete story about an amputee in my area. It’s uplifting without being sentimental.

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Education, Segregation, Isolation

It's time to end segregation of special education students, professors say

Mike Krings, KU News Service, The University of Kansas - February 10, 2015

Well, bravo. Seriously. It’s rare to see such an unequivocal statement in favor of inclusion.

I’m not knowledgeable enough to comment on the details of what these professors are proposing. I do want to note a few things:

- It’s great to see full inclusion strongly endorsed without the usual caveats and reservations.

- It blew my mind a little seeing the Education of All Handicapped Children Act of 1975, (now called the Individuals with Disabilities Education Act or IDEA), described as a law to segregate kids with disabilities, as if that was its purpose. I always understood the law to have been intended to provide education to kids with disabilities that previously had no legal guarantee of it in any form. I think what they are saying here is that the law ended up increasing segregation by turning education of disabled kids into a speciality.

- Calling Special Education “a place rather than a system of supports” is spot-on. That is what it has been for decades. Most schools it still treat Special Education that way. 

- It’s a broken record in the disability activist community, but bears repeating … How can we still be talking about inclusion as if it’s a new idea we might, maybe be ready for, when it has been a core principle of federal Special Education law since at least the early 90’s? 

- Reading "Special Needs Parent" blogs, I’m worried that segregation may be coming back into style among parents of kids with disabilities. It used to be the more apathetic or intimidated families that went along with keeping disabled kids in separate classrooms. Now we have a lot more parents choosing either homeschooling or private schools specializing in disabled kids. It seems like a rejection of public schools, and a vote of no-confidence for Special Education. Yet, the results tend to be just as segregated and isolating as Special Ed at it’s worst.

- Broadly speaking, I think public education in the U.S. is unfairly maligned. However, Special Education does seem to be a very “special” subculture within public education, where there are plenty of great people entangled in an outdated, bureaucratized system that is defensive and resistant to change. Special Education is in reality what all of education sometimes appears to be.

 

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"The Daily Dot" Article

The 7 disability issues everyone needs to know about

Andrew Pulrang, The Daily Dot - March 13, 2015

This is the first of what I hope will be more articles on disability published at The Daily Dot. Thanks to Alice Wong (@SFdirewolf) for putting me in touch with them, and huge thanks to S. E. Smith (@sesmithwrites) for patient editing and showing me the ropes at The Daily Dot.

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The Politics and Policy of Home Care

OHIO GOVERNOR KASICH'S PROPOSAL WOULD INSTITUTIONALIZE PEOPLE WITH DISABILITIES

Jane Hash, The Mobility Resource - February 28, 2015

I’m sure there are all kinds of quasi-budgetary, quasi-reform proposals currently meddling with generally functional home care systems in other states. I’m blogging on what’s happening in Ohio for two reasons.

One, I’ve been reading Tweets about home care in Ohio for months now, maybe a year. Two, this is the first full explanation of the issues I have seen so far. Three, it’s written by Jane Hash, who I met virtually when she discussed American Horror Story: Freak Show with me on my Disability.TV podcast.

It still amazes me that there aren’t more Republican politicians who buy into consumer-directed models of home care. It’s less bureaucratic, it relies on lots of individual responsibility, and, more cynically, consumer direction has an uneasy relationship with unionized nursing. It shouldn’t, but it does.

Of course, the sticking point is that it involves taxpayer money, comparatively large amounts of it, essentially being given, directly or indirectly, to low-income severely disabled people to manage home care for themselves. Personal responsibility may be a cherished value of conservatism, but giving poor people lots of money and services is definitely not.

I am curious about the issue of the alternative program mentioned, which would, apparently, make consumers the “employer of record”. In one sense, this sounds like a reaffirmation of consumer control. On the other hand, it makes it an all-or-nothing proposition … either you take ALL responsibility on yourself, or you give up all of it to a home care agency.

In New York State, where I live, consumer-directed home care typically involves non-profit agencies that act as “fiscal intermediary”. They don’t decide who to hire and fire, and they don’t train the workers. The consumers do that. But the agencies pay the taxes, cut the paychecks, and even provide decent health insurance to the workers, still at a lower cost and slightly better pay to the workers.

All of this aside, it seems like a bad idea to shake things up too often, even if it’s to implement possibly good ideas. Home care is an extremely delicate, intimate thing. If you’re able to find the right workers and create a healthy, functional system for your care, you don’t need loads of bright ideas imposed on you whenever its budget time again.

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