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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Disability.TV Ep. 24 - Red Band Society

What happens when a new TV show you’re looking forward to turns out not to be quite the show you were expecting. That’s what happened when I watched the short-lived, cancelled new series, "Red Band Society.” In this episode, We talk about what the show got right and what it got wrong about disability, and how we felt about the show overall, with Christina Stephens, known on YouTube as Amputee OT, and creator of the Lego Leg. Plus, her friend Adrian chimed in with his perspective on the show.

Red Band Society (IMDB)

Red Band Society trailer

Amputee OT (YouTube Channel)

Lego Leg video

Star Ratings for Red Band Society

Andrew - 2 1/2 stars

Christina - 3 1/2 stars

Adrian - 3 1/4 stars

Disability.TV Podcast

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Weekly Wrap-Up

Monday, June 1, 2015

• Music For A Monday Evening

Tuesday, June 2, 2015

• On Social Security Reform

Wednesday, June 3, 2015

• Podcast Updates

Thursday, June 4, 2015

• Throwback Thursday

Friday, June 5, 2015

• Disability Blogger Link-Up - Post Your Favorite Disability Sites
• Disabled Youth & Vampire Slayers

Saturday, June 6, 2015

• Social Security Reform - Followup

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Social Security Reform - Followup

Report: Social Security Overpaid Disability Benefits by $17B

Stephen Ohlemacher, Associated Press - June 5, 2015

It looks like there is somewhat more credible evidence now that at least some of the concerns about Social Security Disability are warranted. $17 billion is a lot of money, though it’s worth noting that this is the estimated total overpayment over ten years.

Still, it underscores the importance of disabled people being involved, and maybe taking the lead, in reform efforts. The article mentions the agency recovering $8.1 billion in overpayments, but it costs money to recover overpayments, and “recover” means forcing beneficiaries to pay the money back, with interest. In cases of outright fraud, I don’t have a problem with that. But what about people who are disabled and just worked a few too many hours a week that never got processed properly, or who forgot to report some paychecks, or, let’s face it, maybe never fully understood the whole wage reporting / Trial Work Period / Ticket To Work apparatus and made some easily overlooked but highly costly mistakes?

That’s why simplifying the whole thing appeals to me, along with online reporting of earnings or some kind of automatic tracking that works in concert with the IRS, which gets regular wage reports already. These can sound kind of Big Brother, but I would much rather focus on improving real-time accuracy all around than go for more punitive measures that will satisfy Rand Paul and Orrin Hatch’s craving for pounds of flesh, but perhaps do little to make the system better.

And then there is the sad example of the United Kingdom, which has been putting its disabled people through the ringer for two or three years now, to try and squeeze out the “scroungers” that Daily Mail and Telegraph readers are certain plague their system.

We will need to beware of being co-opted, and of legitimizing really bogus ideas about disability, but who better than disabled people themselves to offer constructive criticism and ideas to make Social Security’s disability programs more efficient and effective?

As is so often the case, the key here is "Nothing About Us Without Us." Usually that's quoted in situations where disabled people are omitted or kept out of important discussions and decisions. In this case, it's probably up to us to join in. Failure to do so may be just as harmful as if we were being kept out.

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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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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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