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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Disability Blogger Link-Up - Post Your Favorite Disability Sites

I have decided to offer another Disability Blogger Linkup this weekend, even though we just had one last week and I normally post them every two weeks. As always, you can post anything you like, as long as its related to disability.

However, this time around I’m asking everyone to consider posting links to your favorite disability-related websites, blogs, podcasts, and video blog sites. What disability-related stuff do you read, listen to, or watch on a regular basis? Share it with the community!

Important note: To make the links easier to identify, in the “Your name” blank, type the title of the article or the name of website. In the "Your URL" blank, paste the whole website address of the item you are posting.

Then click the "Enter" button. That's it!

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, June 12, 2015.

Throwback Thursday

A year ago in Disability Thinking: Fault Lines in Disability World.

This discussion of the many divisions and subcategories of the disability community holds up pretty well, but I think it might be time for a re-think. Stay tuned ...

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Podcast Updates

I am having an extra busy week, so I am pushing the next Disability.TV Podcast episode to next Monday, June 8, 2015. As I have mentioned, my guest will be Christina Stephens, known on YouTube as Amputee OT, and creator of the Lego Leg video. We will discuss the disabled characters and disability themes in last fall’s Fox show, Red Band Society.

Here are some tentative topics for other upcoming episodes:

• The Jessa & Beedie Story On Girls
• Series Review: Seinfeld
• The Weird Prevalence of Disability in Don’t Trust The B … In Apartment 23
• Episode Review: Miss Fisher’s Murder Mysteries
• Disabled Characters On Police / Investigation Shows

If anyone is interested in being my guest on any of these episodes, send me an email, or message me in Facebook or Twitter.

And don’t forget, you can get all the episodes of the Disability.TV Podcast by visiting the Disability.TV Website, or by subscribing with iTunes or your favorite podcast application. Subscribing is free, and each new episode is downloaded automatically to your computer or mobile device.

On Social Security Reform

Yesterday afternoon I participated in a Twitter Chat on “Social Security Reform," hosted by Career ACCESS, an initiative to boost employment of young people with disabilities.

The Twitter Chat was mostly about gathering ideas about what the problems are how to fix them. Here is a Storify, created by Career ACCESS, with a sample of what the participants said:

This is a great start. It got me thinking about the different reasons people want to reform Social Security. We are not all on the same page on this. I have noticed that depending on point of view, calls for Social Security Disability and / or SSI reform usually have one or more of the following goals:

Ensure greater financial security for disabled people

We can pretty much assume that most disabled people want this, along with anyone else who actually cares about Social Security’s core mission. It is also an interesting opening for testing some of the new thinking about ideas like Guaranteed Income and the effectiveness of alleviating poverty by simply “giving poor people money,” instead of always trying to craft newer, more elaborate social programs.

Make it easier and more beneficial for disabled people to work and pursue careers

Disabled people want this, too. But so do a lot of social workers and others who believe strongly in the moral, spiritual benefits of work, apart from the financial security that comes from a secure, well-paying job. This point of view has the potential to get a little problematic, because it sometimes leads to some shaming of disabled people who aren't working. However, it is also where liberals and conservatives in disability policy find the most common ground.

Reduce overall Social Security Disability spending

It’s far from clear that Social Security Disability is too expensive or running out of money. The most we can say is that disability benefits are, at times, more costly than some people, maybe most people, think they should be. But who's to say what is the “right” amount to spend? Maybe we're not spending enough. That said, if reforms that accomplish the first two priorities also happen to “bend the cost curve," even a little, that would be a good thing for everyone.

Crack down on fraud

Evidence … as opposed to resentful perception … suggests that there is actually not much fraud at all in Social Security programs. Still, a simpler system, with fewer obscure rules, programs, and eligibility criteria might actually save money and reduce the opportunity for actual, bona fide fraud. Not to mention errors, which may be as much of a problem as fraud.

Confine disability benefits to people who are *really* disabled

This what you hear from people who divide recipients into two categories. There are deserving disabled people, and then there are lazy people and scammers, along with with people who have these weird conditions nobody heard of until a few years ago. They are convinced that common sense is all you need to tell who IS and ISN’T really disabled. Some people really believe this. For others, the argument may be a more socially acceptable substitute for what they really think, which is that the whole program is creeping socialism and should be abolished.

I hope Career ACCESS does more of these Twitter Chats. If they do, I hope more people will participate. We need as many disabled people as possible to keep the reform process on the right track.

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See June 6, 2015 Followup

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Music For A Monday Evening

Somehow, the day got away from me, and the plans I had to post something of substance fell through. Maybe tomorrow. Also, look for a new episode of the Disability.TV Podcast on Wednesday. My guest will be Christina Stephens, a.k.a. AmputeeOT, who spoke with me about last fall’s Fox TV show, Red Band Society.

Meanwhile, check out this Beatles video. I watched the Rock and Roll Hall of Fame Induction Ceremony last night, and one of the highlights was inductee Ringo Starr performing “Boys” with fellow inductees, Green Day. It was pretty great.

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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Weekly Wrap-Up

Monday, May 25, 2015

• Memorial Day

Tuesday, May 26, 2015

• Another TED Idea

Wednesday, May 27, 2015

• Signal Boost: “Our ADA Stories"

Thursday, May 28, 2015

• Throwback Thursday
• Disability In “Mad Max: Fury Road"

Friday, May 29, 2015

• Disability Blogger Link-Up

Saturday, May 30, 2015

• I Almost Overlooked A Worthy Petition

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I Almost Overlooked A Worthy Petition

"Make Drew Feel Incredible (because he is)."

"Everyone deserves the opportunity to feel special."

These are the first two lines of text I read of an email from Change.org. My first though was, “Oh, no! Another non-disabled brother, sister, or parent asking people to please, make a disabled kid’s day by helping them rack up a million “Likes”, or voting for them to win some “special hero" contest they’re about as likely to win as being struck by lightning. I see stuff like this a lot on Facebook, and occasionally in emails, too. They make me feel rotten because the intent behind them is obviously good, but the neediness implied underneath is nauseating.

Then, for some reason, instead of trashing the email, I read it more closely. First I noticed a sub-headline I’d missed because the text was a sort of gray color instead of black. It reads:

"Petitioning Warby Parker"

Now, because I listen to a few hipster podcasts, I know that Warby Parker is an Internet-based mail-order company that sells glasses. Apparently, you fill out a style preference questionnaire online and they send you several pairs of actual glasses of different styles for you to try on at home. You keep the one you like and send the others back. And of course, they’re all meant to be absolutely in style, especially, I’m guessing, for millennials and hipsters of all ages.

So, now I’m intrigued.

I read on, and discover that this is a petition to get Warby Parker to offer some more in-style frames that fit some of the unique face-nose-ear shapes and sizes common to people with Down Syndrome. The creator of the campaign, Bre Whitehead, appears to be the sister of a young man with Down Syndrome who she says, "has a killer fashion sense, and likes to be on trend.” He can’t get cool looking glasses though because none of those designs as currently offered work for his smallish ears and nose bridge.

Having a body that doesn’t match up well with clothes I’d like to wear is familiar to me. So, I’m sold. This is brilliant and amazing and here is why:

- If the petition succeeds, this will make Andrew (the brother, not me) feel special, but in a way that is very specific to his personality, not in some generic or essentially meaningless way, like a million “Likes” or a pizza party or something.

- The petition also calls attention to a very specific, probably not well-known, but really meaningful barrier to the general happiness and freedom of expression of people with a certain kind of disability. Assuming what the sister is saying is more or less true, an entire group of people being stuck with ugly specs is a big deal, especially when they, especially benefit from standing out visually in unique and expressive ways.

- Because we’re talking about cool glasses and not food, clothing, shelter, or healthcare, there’s probably nobody else even thinking about addressing this issue.

- The petition targets a company that can do something about it … if it’s possible to do so … and one that professes to exist partly to be altruistic.

- Andrew will feel special, and so will other people with Down Syndrome, because they will have more choices than before. Choice is something a lot of disabled people don’t have, because we need a thing, but they only make one kind of that thing that will work for us, if we are lucky.

- Finally, I love that Ms. Whitehead isn’t asking for something just for her brother. She’s linking what he needs with what a lot of other people like him probably need (and want!), and aiming for a systemic solution, not an individual gesture of charity.

The reason I am making such a big deal out of this is that because i first mistook this email for a syrupy disability beg, and then realized it was sort of the opposite, it helped me think about the difference between the two approaches people take towards “helping” disabled people. From a distance, people might not see the difference. But it’s night and day to me.

I’ve signed the petition, and so should you.

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Disability Blogger Link-Up

Right! Is everyone ready for another Disability Blogger Link-Up?

Use the blanks below to post a blog post or article on something related to disability … something you want to share.

To make the articles easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the whole website address of the item you are posting.

Then click the "Enter" button. That's it!

Note: If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next Link-Up Friday, June 12, 2015.

Disability In “Mad Max: Fury Road"

After reading about it and resolving to see it for real, I am finally ready to blog about Mad Max: Fury Road, which I saw in the theater last Saturday. Instead of writing a long, comprehensive think piece about disability in the film, I want to highlight two disability-related points that moved me the most — a theme, and a moment.

Genetic Mutation and the Quest for Purity

The main villain, Immortan Joe, and his hordes of pale, spindly "War Boys" all appear to have genetic mutations, presumably the result of nuclear fallout and other unspecified environmental fouling. In a sense, they are all disabled. And apart from the typical quest for uber-patriarchial power, Joe and his clan’s motivating goal seems to be the herding and rough nurturing of “pure” bloodlines … that is, parentages that will produce “normal” children. In pursuit of this otherwise benign goal, they will resort to just about any atrocity, including the kidnapping, slavery, and forced breeding of women who appear to have “clean" DNA. In a sense, Joe and his gang are self-hating disabled people who will do anything to reach an imagined cure of perfect genetics. It’s a lot for disabled people to think about.

Discarding The Arm

As has been fully discussed elsewhere, our hero ... who is unquestionably Imperator Furiosa, (Charlize Theron) and not Mad Max ... is missing half of her left arm, and through most of the film she wears an elaborate and versatile Steampunk-looking prosthetic. There are dozens of ways that this is awesome, especially for amputees who might be watching, but really for anyone with a physical disability. However, my favorite moment about this by far comes at Furiosa’s point of utter despair, when she stalks off by herself across the sand, dropping her extra gear and clothes, shedding her prosthetic arm almost as an afterthought, then kneels and cries out in anguish and frustration.

I am not an amputee. I have never used a prosthetic. But I did wear braces on my legs when I was a child, and I wore a heavy back brace for a year when I was 10. Even when I didn’t exactly hate them, there was something therapeutic about taking them off just to be me and me alone. I interpret this scene as Furiosa stripping herself down to her essential self, without add-ons, shields, or decorations, and that includes showing her naked, uncovered, unhidden stump, or “nubbin” as one blogger called it. “Showing” it isn’t the right word, either. She’s entirely unselfconscious in that moment. She doesn’t care if anyone is looking at her, or her stump. Even though her mood is sad, even despondent, in a way it shows that at least she’s fully at home with herself.

Unlike her enemies, who want to negate and change who they are, Furiosa doesn’t care one way or another. Her prosthetic is entirely practical, too. It proves to be endlessly useful to her, but it's obvious she put no effort at all into making it look like a “normal” arm. Plus, she is comfortable enough in her own skin that in her moment of crisis, rather than adding more stuff, more padding to hide and protect herself, instead she strips things away … including her arm … to become more herself ... as if to say, "Here I am."

As usual, I doubt George Miller or Charlize Theron thought these things through explicitly. This isn’t really a movie about genetics, prosthetics, or the social politics of disability. I don’t think it’s even meant to show audiences how capable disabled people can be. But I am pretty sure it is and does all those things anyway, and I enjoyed the hell out of it.

Plus, you know … there’s ‘splosions!

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Throwback Thursday

Two years ago in Disability Thinking: What’s The Deal With Kevin?

Kevin from The Office, that is.

Two years later, I think differently about cognitive impairment. I’ve also become a lot more attuned to how TV writers like to use ambiguously cognitively disabled characters, which allow them to poke grade-school-level fun at certain stereotypical tics, looks, and voices, while mostly escaping criticism for outright making fun of disabled people. I still believe the open questions about Kevin reflect similar uncertainty people sometimes have in real life, but I also think it gave the writer’s license to laugh at Kevin, supposedly guilt-free.

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