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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Conflicted

What message do we as disabled people want to send about our capabilities and resilience?

We can do anything. Just give us a fair shot. We are happy and independent. We have our acts together. No problem. Nothing to see here!

or

Having a disability is really hard. Disabilities are trying and painful. Social stigma, ableism, and real-life barriers are, if anything, even worse. Many of us have suffered trauma, and that needs to be understood and respected, too.

These things aren't contradictory of course. That's really the key to living well with disabilities. But from the outside ... and sometimes from the inside ... they sometimes seem like contradictions.

I feel like we are at a stage where the disability community spent several decades in which our general PR strategy was "toughing it out." Now, we are sort of redressing that by emphasizing "self care" and reminding the rest of the world that while we are fundamentally okay as people, disability isn't nothing, and we have real barriers to deal with.

This is the first of what will probably be a series of short blog posts on things disabled people don't have completely figured out.

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The Social Life Of The Disabled

I'm a little late in commenting on the Just Say Hi! campaign that got a lot of disabled peoples' blood boiling a couple of weeks ago. I've been thinking about it a lot, though. I have an idea about what the Cerebral Palsy Foundation is trying to do with this effort, ham-fisted and condescending though it may be, and at least one of the reasons why it rubbed so many disabled people the wrong way.

All of the negative social feedback we experience as disabled people can be boiled down to three main categories, or, if you prefer, flavors of interpersonal ableism:

1. Hostility

Undisguised disgust, explosive impatience, derogatory language, bullying.

2. Invisibility

Turning away, avoiding interaction, talking about you as if you aren't there, awkwardness.

3. Intrusion

Forced cheerfulness, condescension, strangers over-sharing and asking personal questions.

Each of us experiences a mix of these things, at different intensities and frequencies. But I think every disabled person experiences one of these more than the others. The kind of social ableism they encounter the most naturally influences their view of ableism itself.

The main problem with "Just Say Hi!" is that it only addresses “Invisibility.” It’s sole aim is to encourage non-disabled people to approach disabled people they see in everyday life and engage with them, starting with just saying “Hi!”. The implication is that the main problem disabled people face in social interactions is being ignored. Also, that the reason they are ignored is that non-disabled people are nervous about talking to disabled people.

There's nothing wrong with that, as far as it goes. It’s definitely a problem for disabled people, and for some disabled people, being ignored and having no friends is a huge and very painful problem. But choosing to address just "Invisibility" implies that it's the only social barrier we face.

Unfortunately the solution, encouraging non-disabled people to approach random people with disabilities and "Say Hi!”, actually ends up making the “Intrusiveness” problem worse. Most of the disabled people who criticized the project on social media said that the last thing they want is for strangers to come up to them and try to be instant friends, or ask them personal, intrusive questions. That’s the way I feel. When I go into my local Starbucks to write and drink my favorite tea, I enjoy exchanging pleasantries with the baristas. I like it when I run into people I know and we have a little chat. I do not want other customers I don’t know to look at me sitting there alone with my visible disabilities and decide to talk to me as their good deed for the day. On the rare occasions they do so, it’s excruciating. Among other things, it makes me responsible for being nice back to them, so I don’t come off as a prickly asshole. So a strategy meant to make me feel at ease has the opposite effect. Instead of feeling relaxed and socially included, I feel put-upon, on the spot.

There’s another factor here as well. It feels like this initiative is influenced by parents of kids with CP. A lot of the positive comments were from parents who wrote about how painful it is for them to see their kids ostracized, with no friends, no socialization. Like I said, this is absolutely a real problem, especially for kids and youth with disabilities. Some disabled adults feel this way, too, but my sense is that it’s much less of a problem for adults than it is for children and youth. So this seems like a campaign designed with disabled kids in mind, and little recognition that disabled adults might have different priorities and preferences.

By the way? How about encouraging disabled people to say “Hi!” if they want to interact with people and make friends? I know from experience … both good and bad … that the quality of my social life is at least as much on me as it is on others. I don’t mean to blame the victim, but as the saying goes, there are two sides to a conversation.

Addendum:

A couple of additional thoughts ... First, I'm not sure there is any sort of social media / awareness campaign that can adequately address the "Hostility" problem, so I don't really blame the Foundation for not dealing with it. It should be dealt with, but with a much deeper, multi-pronged approach. Second, I thought about whether it's important that the Foundation is for people with Cerebral Palsy. On balance, I would say this doesn't really make much of a difference. The issue I think they're trying to cope with is how people with very visible, perhaps audible disabilities are treated, and CP tends to be very noticeable. But so do many if not most other disabilities. So there's that.

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Fun With Fallacies

A couple of weeks ago, I was catching up on back episodes of a podcast called The Light Bulb, when I ran across one about logical fallacies. The hosts, Alastair Stephens and Lani Diane Rich were talking about them in the context of understanding popular culture, but I started thinking about how logical fallacies crop up in discussions about disability. Alastair and Lani referred to, Your Logical Fallacy Is, a beautifully designed website explaining the most common fallacies, with examples of each.

I am still struggling to think of how these mistakes in clear thinking happen specifically in disability dialogs. I’m sure they do happen, not just from non-disabled people arguing against the disability rights perspective, but within the disability community itself. I don’t think we are immune from deceiving others, and ourselves, even when we are basically right about disability matters.

Here are a few of the more obvious examples of disability-related logical fallacies:

No True Scotsman

Changing the definition of something in order to dodge a valid criticism. Otherwise known as moving the goal posts.

Disability example:

A: Autistic people can’t communicate and need constant supervision.

B: Well, I am autistic and I am articulate and mostly able to look after myself, so your idea of autism is too narrow.

A: You are articulate and competent, which means you can’t be autistic, so you have no authority to speak about autism.

Appeal To Authority

Arguing that something is true simply because an authority says it is.

Disability example:

I’m not sure if this is a proper example of this or some other fallacy, but I always feel uncomfortable when we back up some argument about disability with the fact that we have disabilities ourselves. It seems like an Appeal to Authority to me. Of course, it works both ways. Medical and disability professionals are always relying on the power of their credentials to convince us that our instincts are wrong. The key in both cases is that it’s an Appeal to Authority when neither side bothers to make any other kind of argument, and just relies on authority alone.

Slippery Slope

A modest, acceptable step will inevitably lead to a much bigger, more obviously objectionable and unintended outcome later on.

Disability example:

The first example that comes to mind is Assisted Suicide. Those of us who oppose it … including me … often argue that more modest, narrowly-defined legalization laws that many people support would lead eventually to much broader practices that most people now would oppose. Today’s law allowing terminal cancer patients in intractable pain to end their lives, would lead to quadriplegics and other disabled people feeling pressured to die in order to save their families cost and trauma. It’s a fallacy because people are capable of making decisions between one type of thing and another, and the first step on a continuum doesn’t always lead inevitably to the last.

Arguments against disability rights laws like the ADA often include the Slippery Slope fallacy, too. Alarmists argue that prohibiting obvious and avoidable disability discrimination will lead to disabled people thinking they are entitled to do any kind of job they want … blind people flying passenger planes and the like.

As Alastair and Lani were quick to point out in their discussion, knowledge of logical fallacies is unfortunately often used as a rhetorical weapon to impress or intimidate opponents. It’s also easy to misuse these concepts to not only question other peoples’ ideas, but to destroy them and humiliate the people who have them. Harping on logical fallacies is just plain annoying ... a lot like mansplaining and ablesplaining. It’s also important to remember the Fallacy Fallacy … the idea that if an argument contains a logical fallacy, it must be wrong. Sometimes, the slope really is slippery. Sometimes authorities are right. Sometimes it's appropriate to change or clarify how something is typically defined.

The true value of knowing about logical fallacies is that they can help all of us become more aware of the most common ways we misinterpret the world and even our own thoughts and feelings. Being aware of them doesn’t mean being a slave to them. It does mean that we at least try, and some point, to put our thoughts and feelings through a bit of self-examination and critical analysis. We may or may not decide to change course as a result, but it’s always better to be a bit more aware of what we are doing … as well as of what other people are saying.

What are your “favorite” disability-based logical fallacies? What kinds of logical goofs do we, and our opponents, make most often?

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Grace Period

How much time do you allow for people to catch up with new developments in disability language and ideas?

When I started out working in Independent Living, "crippled" was inexcusably insulting, unless used in a joking, in-group way among disabled people. "Handicapped" was just barely out date, but still very common; our general approach was to correct it kindly and patiently. "Person with a disability" was the ideal, and using it marked you as someone with a strong, progressive disability consciousness.

Today, 25 or so years later, hearing "handicapped" hurts to hear, and marks a person as hopelessly out of date. "Person with a disability" is in rough parity with "disabled person," but terminology is evolving fast towards "disabled person." Person First Language is in roughly the same position today that "handicapped" was 25 years ago. Some people honestly see it as an improvement over what came before, while others have left it behind. Advocates for Identity First Language give strong, passionate arguments in its favor, but say that they respect disabled people who still prefer to call themselves "person with a disability."

I see the same kind thing in disability-related thinking and practices. 25 years ago, most everyone agreed that large institutions were terrible for disabled people, and all but a few forward-thinkers viewed group homes as a progressive alternative. Sheltered workshops were generally viewed positively in the wider community, and were only beginning to be seriously questioned.

Today, I would view anyone who thinks group homes and sheltered workshops are awesome as well behind the curve, though I'm not sure yet that we are at the place where belief in these models can be fairly called shameful. I guess it depends on who I am talking to ... a random person in the community or someone familiar with disability issues.

On the other hand, people still talk about accessibility standards and the ADA like they are new requirements, even though the ADA just turned 25 and the first accessibility standards were published in the late '60s. And "inclusion" in schools, or, as we used to call it, "mainstreaming," is still often debated as if we are still pondering a new approach, when it's been the standard goal for education since the early to mid '80s ... at least on paper. To me, it's long past time for literally everyone to be on board with these things.

I think 25 years makes a pretty good grace period. If your thinking and practices around disability are older than that, I don't have much sympathy. But if you're still a little behind by, say, 10 years, we can talk.

How long is your grace period for social change?

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The Way Of The Advocate Is Hard

One of the reasons why strong, vocal disability advocates get more negative than positive response in social media ... such as when they criticize Inspiration Porn ... is that most people find strong, critical, negative opinions on any subject to be unattractive. Advocates can shape attitudes over time. They can bring about important policy change. A significant minority of people actually admire advocates and love what they do. But on just about any issue you can name, advocates and social critics who speak their minds are rarely liked.

This phenomenon is a bit more intense and hypocritical in the disability sphere because of the unique characteristics of ableism. But I don't think the backlash is much worse or all that different from the responses people get when they express challenging opinions on race, gender, politics, religion, economics, etc.

So what?

Well, it suggests that if you're going to be an advocate, especially in the realm of disability, don't be surprised if you catch a lot of crap for it. If you're very good at it, and articulate, you might gain a small but loyal fan base within the activist community. If you're smart about strategy and don't take things too personally, you can succeed in what you set out to do. But if you venture out into the wider public discourse, don't expect to be either liked or admired. Change is uncomfortable. Most people don't like to be uncomfortable. And people absolutely hate it when the people they think they are helping are the ones making them feel uncomfortable.

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Stuff That Worries Me

I’ve decided to start a new recurring feature called "Stuff That Worries Me."

Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.

My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.

Here’s the first one:

Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.

On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?

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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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Awareness Or Activism?

Minister fails to solve mystery of Swansea’s ‘Disability Confident City’ accolade

John Pring, Disability News Service - July 3, 2015

You don’t have to understand the intricacies of disability policy in the UK to realize that this article is about the enduring conflict between two approaches to disability advocacy … Activism vs. Awareness.

There are many ways to define these terms. What we see here is two different ways to accomplish roughly the same goal, significantly improving employment prospects for people with disabilities.

The Awareness approach is to persuade employers to hire more disabled people. It’s based on the assumption that the unemployment is high for disabled people mainly because employers don’t understand disability and harbor misconceptions about the capabilities of disabled people. If we can just reach all he employers, sit them down, explain where their thinking is off base, and maybe introduce them to a few highly capable and charismatic disabled people, then things will change for the better. All this requires maintaining more or less friendly, patient relations with employers. Employers don’t have to attend our seminars, and in fact, hiring itself is basically a matter of choice, not obligation, so accusing and alienating employers won’t help.

The Advocacy approach focuses more on structural issues that hold down employment of people with disabilities. This may include work disincentives, (in which you actually lose money due to reduced benefits when you take a job), a mismatch between open jobs and applicants’ qualifications, inaccessible workplaces, and both deliberate and unconscious discrimination. After decades of anti-discrimination laws that often seem toothless, it is easy to conclude that employers will never change their practices unless forced to do so. In this view, disability awareness seminars, corporate-level networking, and aspirational slogans are wastes of time. Worse, they can function as cover for people who don’t want to do anything of substance, but need to appear as if they are.

The Awareness approach is generally optimistic, but runs the risk of being naive, and coopted and hijacked by the people we are trying to persuade. As the article linked above suggests, it is frighteningly easy for bureaucracies to cynically adopt progressive rhetoric that bares no resemblance to their policies and practices.

The Advocacy approach is, at least on the surface, pessimistic, and many people unpleasant, but may be more realistic and effective when carefully targeted. Personally, I prefer Awareness as an activity, but I have more actual faith in Activism to actually accomplish things.

Within the disability community, these two approaches are not just strategies, they are separate subcultures.

Activists and awareness people rarely work together or talk to each other. And people seem to gravitate towards one or the other approach naturally, based as much on temperament as philosophy. Some of us enjoy teaching and shmoozing. Others prefer campaigning and protesting. For some, asking people to change feels like begging. Others don’t like the anger and sometimes irrationality they perceive in activism. It is both a strategic and a personal choice.

I still think there are arguments on both sides when it comes to improving the employment picture for disabled people. I’m skeptical that mere persuasion and “disability awareness” will ever make much of a difference in employment. Yet, I’m equally doubtful about how effective any sort of hiring quota or mandatory system would be in the long run. Both approaches seem rather futile to me.

How do we dramatically improve employment for disabled people? It’s one of the few disability rights questions I really don’t know how to answer.

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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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Disabled Youth & Vampire Slayers

Early yesterday morning, while I lay in bed snoozing and listening to a podcast, I came across some unexpected insight into part of the disability experience, thanks to Buffy The Vampire Slayer.

The podcast I was listening to is called Dusted, in which husband and wife professional writers dissect and analyze every episode of Buffy, focusing particular attention to writing and storytelling technique.

The insight came when Loni and Alastair were talking about Joyce, mother of Buffy, (teenage slayer of vampires), and Giles, Buffy's “Watcher,” that is, her trainer, supervisor, and mentor. The thought that woke me up fully is that Joyce and Giles’ different approaches to Buffy and her “special” identity look a lot like the different perspectives we see on what it means to have a disability.

To be clear, Buffy isn’t disabled. The premise of the show is that she is more or less “chosen,” by mysterious forces nobody controls, to be “the one girl in all the world” endowed with the strength, durability, and instinct to slay vampires and demons … who in the universe of the show are quite real, though most people don’t know it. Buffy did not choose this role. Although it comes with near-superhero powers, being the “chosen one” is also a massive burden, and pretty much precludes living a “normal life.” In fact, being The Slayer means a rather short life is pretty likely. Much of the first two seasons of the show involves Buffy coming to terms with her identity and duty. She wants to be a “normal” teenage girl … go to school, have friends, have a boyfriend, go to dances … and she does all of those things to some extent. But as Giles often reminds her, her life can never be “normal.” Whether she likes it or not, there is an important part of her identity that she can’t change. She can try to deny it, even run away from it, but on the show it’s clear that she will only find a semblance of peace and fulfillment if she embraces it.

(Spoilers ahead!)

Joyce and Buffy

Joyce finds out that Buffy is The Slayer late in the second season, and while she accepts the truth of it rather more quickly than any real-world parent would, her reaction reminded me of a parent dealing with a child’s disability. Notably, there are one or two moments where the writers have Joyce draw direct parallels to having a child who turns out to be gay, another type of identity where some people mistakenly hope that a little determination might make it not be so. “Have you tried not being The Slayer,” Joyce pleads. Later, when Buffy gets great SAT scores, Joyce latches onto this like a life preserver. Buffy can go to a college far away and escape this Slayer thing! Obtain all the trappings of normalcy, look normal and act normal, and you will be normal.

Buffy and Giles

Giles has a more subtle view. He knows, and endeavors to impress on Buffy, that she will never live a normal life. However, she can live a good life. In fact, fulfilling her unusual “destiny” is an important part of Buffy living a good, and fulfilling life.

Buffy's "parents" both want the best for her. Neither wants to see her suffer or struggle with things a teenager should never have to struggle with. But Joyce still thinks there might be a way out, while Giles knows there isn't, but that it still can be OK for Buffy, if she is proactive and embraces her role.

I am not suggesting that having a disability is anything like being a superhero … a tempting but misleading comparison. Having a disability isn't much like being a mystically chosen vampire slayer with a life-long, world-saving mission.

Yet, there are similarities.

Disability is partly a condition, partly an identity, something nobody chooses, and most people can't really escape. Like Buffy, you can live a good life, but there's going to be some danger, hardship, and some very specific kinds of pain. Most people, even some of those closest to you, don't really "get" what your life entails.

What hit me like a freight train is that Joyce and Giles’ different understandings of Buffy’s “special” identity tells us a lot about how we view the road ahead for youth with disabilities.

The “Joyce" strategy is to turn away, mask the disability, don't acknowledge or "give in" to it. Try just the right things, try hard enough, and you might just make it go away. I think this works for some people with certain kinds of disabilities, but more often it simply delays a real reckoning. Still, it’s an understandable reaction, and it may be going too far to say that it is entirely wrong.

The “Giles" approach may at first seem bleak, but it is just as loving and optimistic. He knows that Buffy’s unique identity is inescapable, and that the best thing to do about it is make the best of it. He doesn’t see this as settling for less, either. Being the Slayer is a gift. Buffy has an important role to play. And, her life can be wonderful as much because of that as in spite of it. It’s just going to be very different from what Joyce, and even Buffy, may have had in mind. It is like that with disabilities, too.

Whether you are disabled yourself or have a friend or family member with a disability, what are you … a Joyce, or a Giles?

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Another TED Idea

Doing justice to disability: the upside of TEDx’s Stella bungle

Gerard Goggin and Katie Ellis, The Conversation - May 25, 2015

(Via @Criptiques)

I had a little to say in Sunday's Weekly Reading List, about the TEDxSydney controversy, but mostly I was confused. Thanks the article linked above, I'm a little less confused, and a bit more interested.

"Key to the disappointment and anger felt by many in response to #stellaschallenge is a palpable irony. TEDx Sydney calls for conversations – but doesn’t recognise that there are already many conversations, relationships, and media, attitudinal, and social transformations underway. So, rather than speaking, genuine listening is required – often the hardest thing to do.

"Fabulous as Stella’s TEDx talk is, it’s time to go beyond just resharing it. We need to really listen to it. We must acknowledge and support the many other voices of people with disabilities."

I'm still not feeling the outrage others seem to feel, but I do agree the critics of TED's inital approach have made good points. It's not just the proposed methods, but the goal itself that should be re-thought, with Stella Young's specific points of view in mind.

Here's a thought ...

Why not keep it simple? Just sponsor a series of TEDxDisability conferences, in which all of the speakers are disabled people, representing a wide diversity of race, gender, sexual orientation, nationality, ages, disability types, and above all, diverse perspectives and and philosophies of disability, from the intensely personal to the hard-edged political, and all the tones, styles, and positions in between.

Let's hear from amputee mountain climbers and quadriplegic protestors; little person accessibility campaigners and blind entrepreneurs; youth self-help motivators and middle-aged policy analysts; artists with Down Syndrome and litigators with spinal cord injury; autistic teachers and Deaf rehabilitation counselors; bipolar bloggers and learning disabled journalists. It might even be worthwhile to hear a speaker who thinks "Insipiration Porn" isn't such a terrible thing. As long as all the voices are authenttic disabled voices, there is room for all of us to hear all sorts of ideas.

A new set of TED conferences sounds like more talking, less action, which is one of the problems with the original plan. However, I would argue that giving a high-profile, more or less equal stage to all of the branches and clans of he broader disability community would help us decide what our priorities really are. At the same time, the non-disabled community would learn a lot, just by listenning.

As I said, it's just a thought.

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“Inspiration” Without The “Porn"

There was quite a lot of discussion last week among disability bloggers and Facebookers about a viral video showing a restaurant employee “feeding” a physically disabled customer.

While newspapers and TV stations all over North America reported it as an unambiguous “good news” story, most of the comments from disabled people ranged from head-shaking to outrage. On one level, it was a simple reaction to standard “Inspiration Porn.” Inspiration Porn is that thing where someone writes a news story or posts an “inspiring” photo or video involving a disabled person, something clearly meant to make us go, “Awwww,” and appreciate bravery, persistence, or kindness, preferably without asking awkward questions about context.

On another level, this particular video raised very specific questions about privacy and objectification. Who is this disabled woman? What is her name? Did she know she was being filmed? If she had known, would she have been okay with the video being publicly posted and then going viral? Was she happy with how the employee was helping her, or did she have some other solution in mind? And, who is the customer filming the scene? Did he or she think for a moment about how the disabled woman might feel? Did they introduce themselves to her and ask her permission to film her and present this bit of her life in order to “inspire” millions of strangers? Is it possible a severely disabled person might have mixed feelings about being looked at in this way?

Of course, these questions provoked their own perplexed, angry responses from people who apparently felt cranky disability activists were raining on a parade they had been enjoying immensely. Why do people have to put a sinister spin on a rare “good news” story? Why are disabled people so angry about stuff like this? Aren’t they always asking retail staff to help them? The world is such a nasty place, and this is a nice story. Lighten up!

I have been thinking for awhile that we need to come up with a way to allow some cultural space for people who really love and crave “inspiration”, while keeping it from becoming “Inspiration Porn” that insults disabled people and sends ableist messages about disability.

Maybe we should make a checklist for would-be filmers, meme-makers, and reporters thinking about using disabled people as their subjects:

- Is the disabled person a willing participant in the story, video, or photo?

- Does the disabled person have a voice in the finished product … something relevant to say, in their own words?

- Is the disabled person credited by name? Does the piece include include any contact and background information about the disabled person, if they want it included?

- Does the finished product include enough accurate information on the situation and disability to put the scene or incident in context?

- Who is the “hero” of the scene? Are they doing something truly remarkable, or interesting only compared to very low, possibly insulting expectations?

- If you were the disabled person in the finished product, how would you feel about it?

- Consider how the disabled person might actually feel, not how you think they should feel.

If you look at this list and think, “Who’s going to be comfortable with all that?”, then that should tell you something about Inspiration Porn. If what you’re doing can’t pass these simple tests, then maybe the world doesn’t need your inspiring creation right now.

On the other hand, I think this list might be reasonable enough to allow a few disability-related photo memes, videos, and news stories of the “inspirational” variety to satisfy peoples’ apparent craving for such things. I think it’s worth noting, too, that some disabled people feel good about inspiring others, and actually spend time and creativity doing so through videos, photo memes, blog posts, and the like.

The key difference is that those are messages from disabled people, in which disabled people are active participants with human voices and points of view, not nameless objects on which others project their feelings.

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Throwback Thursday

A year ago in Disability Thinking: Defined By Our Disabilities?

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Notable Tweets

Student carries disabled friend to school every day for three years so he never misses a class http://t.co/nwvCDBuFxS pic.twitter.com/YPjNt23iAB
— The Independent (@Independent) April 26, 2015

don't be inspired by this, be pissed off no one else has provided this person w independent mobility to get educated https://t.co/DbF9ay1KIt
— Zara (@zaranosaur) April 26, 2015

I found these in my notes from last week. I saved them because together they explain why "Inspiration Porn" is bad. It's not just because it implies most disabled people are pathetic. The real problem is that by highlighting personal virtue, Inspiration Porn distracts from the unjust and entirely changeable situations that make such virtue necessary. Recognizing this takes nothing away from the individuals being virtuous by the way. In the absence of justice, a bit of one-on-one kindness and sacrifice is better than nothing. But let's not mistake them for solutions.

Thinking About Disability On TV

I doubt there are many people who think there's too much disability on TV. People come up with all kinds of reasons why it’s so rare, and why disability stories are the way they are. However, there is a near consensus that life would be better for disabled people if everyone saw more disabled people in popular culture.

That sounds sensible, though I am skeptical about any definite cause-effect relationship, for the good or the bad. Plus, it doesn’t answer a critical question. Which kinds of depictions do the most harm, and which the most good? What exactly are we looking for in disability on TV?

I love TV, I am disabled, and I like digging into why popular culture is the way it is, and what that means for people in real life. That’s why I started a podcast, Disability.TV, and why I have been participating in some great discussions about this on social media, including Saturday evening #FilmDis Twitter discussions. I’ve got so many questions and ideas floating around, at this point. I think this would be a good time for a brain dump. I’d like to see what others think about the questions I have been hashing out.

Questions

Would it be enough just to see more disabled characters on TV shows? What is the relationship between quantity and quality?

Do we want to see only uplifting disabled characters? Is there any value in disabled characters who aren’t admirable, or do they run too much risk of sending the wrong messages about disabled people?

Do most disabled characters on TV present an authentic disabled person’s point of view, a non-disabled person’s point of view, or a TV writer’s need for something to drive the plot?

What about TV portrayals of some of the terrible ways disabled people have been treated, now and in the past? When does accurate, brave depiction of evil become just more exploitation?

Do we automatically count it against a show if characters on it say things about disability we disagree with? What does it mean when a show clearly wants us to believe one thing about disability, but we see something else entirely on the very same show?

Is it possible to have good disability portrayals in comedy, without it devolving into mockery?

Are disabled character behaviors that fit into disability cliches and stereotypes inherently offensive?

Is it always offensive for non-disabled actors to play disabled characters? In addition to questions of equal opportunity for disabled actors, is it akin to blackface? Does “cripping up” negate any other value in a depiction?

Is there a correlation between broad popularity and good disability portrayals?

What kinds of disabled characters and disability situations on TV give us joy?

Tyrion Test

Before starting the Disability.TV Podcast, I tried to come up with a simple, clear criteria for judging disability on TV or in the movies. I started with the Bechdel Test, which evaluates how a show or movie portrays women, based on whether it:

1) Features at least two women, who

2) Talk to each other,

3) About something other than a man.

After a few tries, I came up with what I called the Tyrion Test, after my favorite disabled character, Tyrion Lannister on Game Of Thrones:

1) At least one character with disabilities is involved in significant plot developments not centered on their disabilities,

2) Disabilities are depicted realistically, neither less nor more severe than they would be in real life, and

3) Disabled characters are givers as well as receivers … supportive of other characters, not just supported by them.

This is an interesting measure, I think, but it leaves too many angles unexamined.

5-Star Rating System for Disability Onscreen

After several months of podcasting, and conversations about this over Twitter, I decided to come up with a more traditional 5-star rating system, similar to what Netflix and some critics use to rate movies and TV shows. Each TV show can earn up to 5 stars, but each star represents a particular measure.

Authenticity … Are the details of disability portrayed accurately?

Characters … Are disabled characters fully developed, low on cliché, and more than just plot devices?

Messages … Does the work have something to say about disability?

Representation … Are disabled characters played by disabled actors?

Watchability … Is the work overall entertaining and high-quality?

I allow half stars.

The best thing about this system is that it allows full credit for parts of the depiction that work, and takes proportional credit off the score for aspects that fail. Each category is of about equal value. So, since disabled characters are very rarely played by disabled actors, even some very good shows will loose half or a full star for lack of Representation. Similarly, if a show dutifully checks all the speciality disability boxes, but is dull and poorly presented, it’s not going to earn full credit for Watchability, which can significantly impact the show’s overall star rating.

On the other hand, I feel a little like the dour Headmaster in Dead Poet's Society who takes over Mr. Keating's class and tries to teach the kids how to appreciate poetry by use of charts and graphs.

How do you respond to disability on TV? What do you hate to see, and what would you most like to see?

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Making Accessible Campaign Propaganda (ahem) Materials

'Candidates should encourage disabled people to vote' Minister says

BBC News - March 26, 2015

I am not aware of anyone in the United States making a high-profile, publicized attempt to produce political campaign materials specifically for voters with intellectual disabilities. It sounds like a worthwhile thing to do, and a pretty interesting task.

For one thing, there are so many types and shades of intellectual disability ... which I believe is what the BBC means when they say, "learning disability".

And how, exactly, does one "translate" a party platform so that intellectually disabled people can understand it? What does "simplifying" mean? Do you take out all the metaphors and colloquial phrases? Do you use shorter words and fewer compound sentences? How does "large print" help an intellectually disabled person with (most likely) normal eyesight?

Or, is it about more than grammar and font size? Are there social studies texbooks designed to teach adults with intellectual disabilities what "liberal", "conservative", and "libertarian" mean? Do you try to alert intellectually disabled voters to opaque, misleading slogans that all sound good, even when they contradict each other?

I would really like to learn more about this.

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