Friday, March 20, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
All ready for another Disability Blogger Link-Up?

Use the doohickey below to post a blog post or article on something related to disability  something you want others to read.

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 thing 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, April 3, 2015.

Thursday, March 19, 2015

REALLY!?!

Photo of Amy Pohler and Seth Meyers on the Weekend Update set, with the word "REALLY!?!" superimposed
Ableism is complex, if you want to dig into it, but maybe our response to it shouldn't be. Instead of tweeting and blogging at length about the roots and subtleties of othering and objectification, maybe we should take a tip from Seth Meyers and Amy Pohler's SNL Weekend Update bit, and just say, “REALLY!?!"

Try it!
We can't afford to put in a ramp. We hardly ever see handicapped people around here anyway. REALLY!?!
I'm sorry, we didnt have time to make large print copies. REALLY!?!
What will she have to drink? REALLY!?!
I don't think of you as disabled! REALLY!?! 
Complete stranger says, "I just wanted to tell you that you won't be like this when you're in heaven." REALLY!?! 
If I ever become that disabled, I want em to just pull the plug! REALLY!?! 
We should go back to putting people in institutions. Itll be fine. Well make them nicer. REALLY!?!
Note on your windshield: "Hey handicap!  You want pity go to a one leg support group!" REALLY!?!
Complete stranger takes photos of a group of disabled people in a mall food court. REALLY!?!
Seriously, I like this because one of the key questions about ableism is whether or not people know theyre being ableist. Conventional wisdom says that most of the time, people dont know. I have come to think the opposite. I think most people know on some level that what they are saying is wrong. They may not know exactly how, but they know it.

So REALLY!?!” can be a powerful wakeup call prompting a moment of self-reflection. When spoken by a disabled person, it also signals, “I noticed,” which is another important thing. People say and do ableist things because they think nobody will notice. At the very least, we should make it clear that we are paying attention, we do notice, and it’s not okay.

Best of all, REALLY!?!” isn’t so much outraged as baffled. Instead of saying, “You really wounded me”, it says, “Did you actually say that? Ha, ha, ha, ha!

They’re the ones who should feel embarrassed, not us.

Throwback Thursday

illustration of the time machine from the film "Time Machine"
A year ago in Disability thinking  Another Video Of The Day.

AmputeeOT is the first disability vlogger I ever saw.

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Wednesday, March 18, 2015

Thinking About The Apple Watch, Drooling Just A Bit


Timothy B. Lee, Vox.com - March 10, 2015

Francie Diep, Pacific Standard - March 10, 2015

I wont be buying an Apple Watch anytime soon. A new iPhone might be in my future, but not an Apple Watch, though I have to admit, it looks pretty cool. Apple products always at least look good.

It does look like the Apple Watch might have a couple of advantages for disabled people over other smart devices:

1. You wear it on your wrist, so its probably easy to get to and hard to lose. You can also probably mount it in a dozen other creative ways ... strapped to a wheelchair armrest, hung on a chain around your neck, wrapped around a cane.

2. It's got those sensors on the back that can detect your heart rate, and motion sensors that can tell when you are standing, sitting, walking, running, etc. This suggests could monitor some chronic health conditions. If those sensors are possible, others might be not far off, like sensors for blood sugar (diabetes), oxygen levels (asthma), or maybe even mood.

An iPhone could be made that would accomplish these things pretty easily. Apple could add diagnostic sensors to the back. Third-party companies could sell all sorts of add-on straps and holders to secure the phone in a wide variety of situations and orientations. Still, the watchs size and convenience may offer advantages no phone or tablet can match.

I doubt the Apple Watch as currently conceived and marketed will revolutionize life for disabled people, but it does seem like the kind of multipurpose gadget that creative minds could adapt and put to use in ways Apple might never have thought about.

For example:

Voice Output  It would be great to be able to record and store lots of phrases for daily use by people with speech impairment, easily retrieved and then played on the watch. It may already be able to do this in a rough sort of way, using the watch's speech to text feature. Note: There seems to be some ambiguity about whether VoiceOver will work on the Apple Watch. VoiceOver is a feature built into all current Apple devices that audibly “reads” whatever is on the screen, mainly for the benefit of visually impaired users. It seems to me very unlikely that VoiceOver wouldn’t work on the Apple Watch, but we’ll have to wait and see.

Voice Input  Siri comes standard with the Apple Watch, same as the iPhone, and you can control all of these devices with your voice, using Siri. A few tweaks here and there to Siri and maybe other apps, should easily make the Apple Watch fully voice operable. This could be extra helpful for people who can’t use their hands, or have difficulty working with really small displays and icons.

Environmental Controls … The Apple Watch will have a built-in app that turns it into a remote control for your TV and music devices. Could it be that difficult for someone to design an app that controls automatic devices  such as door and window openers, lights, thermostats, even an adjustable bed ... throughout a house or apartment? Environmental controls for disabled people have been around for years, but tend to be expensive and tied to very specialized and exclusive control systems. A wrist-based controller that adjusts to multiple systems seems like a natural.

Identification … The health app on the iPhone already has a feature that stores your personal medical information for emergency retrieval. A similar app could be easily designed to store information and helpful instructions for people with disabilities that sometimes impair communication and require help from random strangers, not just EMT and ER doctors.

Personal Emergency Response  Personal Emergency Response Systems already use pendants and watch-like controllers, so again, creating apps for these services should be easy. It may even have the basic capability of direct two-way verbal communication. At minimum, it seems capable already of sending a verbally dictated text message to anyone with a receiving app.

The Apple Watch is going to be expensive, and Im not even thinking about the $10,000 gold Edition edition. But iPhones are expensive, too. The thing is these devices do more than one thing, which makes their higher prices a reasonable value, even for people without a lot of money. If programs like private health insurance, Vocational Rehabilitation, and Medicaid were to see the adaptive value of such devices, they might come within reach of people with even the highest adaptive needs, and lowest incomes.

Of course, there are also going to be features of the Apple Watch that are basically already fully available through other devices, either existing iOS apps, or websites any Apple device  or any computer device at all  can access. Once you see the thing as a platform more than a purpose-built device, the possibilities do seem endless.

So, Im not buying an Apple Watch yet, but I know better than to say never.

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Tuesday, March 17, 2015

TV Notes

Photo of an old-style TV set with the wheelchair symbol on the screen
Im behind in my TV-watching.

Im supposed to be watching as many bits and pieces of disability-relevant Reality TV Shows as I can get my hands on, to beef up my scope of experience for my podcast discussion with Emily Ladau. We are scheduled to talk by Skype on Friday. I hope to post the podcast episode on Monday, March 23.

What Ive actually been doing is watching the first 5 seasons of M*A*S*H on Netflix. Its not a complete waste of time though. I have found a bit of a disability story, about a college football running back who has his wounded leg amputated at the 4077th. Season 5, Episode 18 “End Run. Theres nothing very interesting in the portrayal of disability, but that, in itself is kind of interesting. It isnt as horrible as one might imagine, but the story does lean heavily on an extremely familiar trope of disability on TV … the angry cripple who needs a kind but tough non-disabled person to persuade them that life is worth living after all. Its fairly subtle at the end, more so than most mid-70s sitcoms usually managed, but the great insight struck me as pretty by-the-numbers and simplistic to me. Plus, the solution was completely metaphorical stuff about “trying”.  Nobody mentioned a single specific idea for what this BLACK GUY might DO in the 1950s, without a football career and missing a leg.

My watch list for future episodes of Disability.TV is also extensive. For instance:

- The last 2 seasons of Parenthood.

- Season 3 of Call The Midwife, and then the Season 4 about to start, both of which apparently have appearances by actors with disabilities playing disabled characters (see below).

- Checking out new series Empire and Switched At Birth, which I have heard include disabled characters and / or disability themes.

- At some point, I need to watch Deadwood, for its own sake and to see veteran disabled actor Jeri Jewel being awesome.

- I also really want to watch Carnivale, partly to see how it compares with the similarly-set American Horror Story: Freak Show.

- I hope to do a discussion soon about disability on Downton Abbey, but for better or worse, Ive got that whole damned series pretty much memorized, so thats something.

Fortunately, future podcasts should be easier to do and less scattered to listen to using a new 5-star rating system, introduced in Disability.TV Episode 20. Each TV show will either gain or lose a star for each of the following criteria:

Authenticity …Getting the details of disability right.
Characters  Are disabled characters fully developed, and not cliché.
Messages  What the show says about disability.
Representation  Are disabled characters played by disabled actors?
Watchability  Is the show any good?

Try these criteria on the disability shows and movies you see. Its fun!

Now theres something I need to grouse about.

I have been participating off and on with the #FilmDis Twitter discussions that happen every Saturday evening at 9 PM Eastern. I highly recommend it to anyone interested in disability on film or TV. One thing I really appreciate about the group is that it has raised my consciousness about the artistic pitfalls and above all the injustice of non-disabled actors playing disabled characters, sometimes called "Cripface", but probably better termed "Cripping Up." Most of the rare disability roles written are cast this way. Meanwhile, actual actors with disabilities cant get work. Its an important issue that colors the entire topic of disability in popular culture.

However, this poses an added dilemma for me. I remain fascinated by the themes, messages, and ideas expressed when disability is depicted in popular culture, especially on TV. I find it equally fascinating regardless of who plays the parts. Maybe its because I am just more attuned to writing than I am to acting, but while I find cripping up offensive and unjust, I also find that it doesnt much affect my interest in what the show says about disability. For better or worse, content is really my thing, and whether or not disabled actors play disabled characters in a piece is only one part of how I judge a work overall (see above). Maybe six months or a year from now cripping up will be more of a deal-breaker for me, as it is for a lot of disabled people. At the moment, for me, it isn’t. Im not sure I know how to feel about that.

And now, back to our show ...

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Monday, March 16, 2015

That Wheelchair

Victoria Dawson, Smithsonian.com - March 13, 2015

It’s hard to believe Ed Roberts died 20 years ago. I never met him, but by creating the Independent Living movement, he was one of the most influential people in my life. Ed Roberts was inspirational, in the best, least sentimental, most literal sense. His example libertates disabled people, and his ideas give structure to our struggle for equality and freedom:
“ … a man who defied—and encouraged others to defy—the once-undisputed view that severely disabled people belonged in institutions and that the able-bodied best knew what the disabled needed."
I guess if you have to boil Independent Living … and all of Disability Culture for that matter … into two points, those are good ones.

As for the wheelchair, I love how used, personalized, and “lived in” it looks. I also appreciate what Simi Linton says about wheelchairs in a quote in the Smithsonian article:
"'It isn’t a device that binds us or limits us: it is an ally, an accommodation,' says Simi Linton, a consultant on disability and the arts, the author of My Body Politic, and herself a wheelchair user. 'It shows a disabled person’s authority over the terms of mobility. It expands our horizons.'"
Ed Roberts and the birth of Independent Living are both part of history. Yet, the issues today are basically the same as they have been from the start. We still struggle to help disabled people live on their own terms. Disabled voices still have to fight to be heard and listened to. And people still view disabled people and their accessories with as sort of low-grade dread.

There’s still a lot of work to do. Even thought some of the surface issues have changed, and even though expectations for disabled people are, thankfully, somewhat higher than they used to be, the goals and battles are basically same.


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Saturday, March 14, 2015

Disability Or Disease?

This morning I was listening to a Sawbones podcast episode on Malaria. Co-host Justin mentioned people who “suffer from Malaria, and two things instantly went through my mind.

First, I thought, Dont say suffer! Then I thought, “No, wait, Malaria is a disease, an illness, not a disability. Suffer is the right word."

The difference between disease and disability one way of understanding the different ways people approach disability. People who subscribe more to the Medical Model … who focus on treatment, rehabilitation, and finding a cure … think of disability much as we think of Cancer, Leukemia, or Malaria. Most disabilities aren't like that, though. They are social identities, imposed from the outside, and they are more or less permanent conditions that are a part of us.

There are gray area conditions that are a little bit disability, and a little bit disease. Multiple Sclerosis, ALS, and some kinds of Muscular Dystrophy are progressive and can be life-threatening. But they’re not infectious, and on a day to day basis act more like a broken hip than Influenza. See also: Alzheimer's Disease and Down Syndrome.


This helps explain why so many disabled people talk about “fighting,” “beating,” and “overcoming" their disabilities. If you view it as an invading force, it makes sense. And in general, people are more familiar with illness than with disability, so the language and mindset are right there for easy access.

"The Daily Dot" Article

Stylized capital "D", logo of The Daily Dot
Andrew Pulrang, The Daily Dot - March 13, 2015

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

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Friday, March 13, 2015

Housekeeping

Three silhouette figures in a row, each doing a cleaning activity
I’m not working today. The weather is decent. Its not that cold. My winter bronchitis is 98% done. Its time I spent a day outside my apartment, enjoying some fresh, unheated air. So, Im going to post a few housekeeping notes and and leave it at that:

- After several weeks posting Disability Blogger Link-Ups every Friday, Ive decided to switch to every other Friday. That should allow enough time for people to collect more of their favorite disability-related posts and articles. So, the next Link-Up will be next Friday, March 20.

- I've set up a date and time to talk with Emily Ladau about disability on “reality TV shows”, for the Disability.TV Podcast. Im also working on getting co-hosts for episodes on “Downton Abbey” and “The Red Band Society.” If you haven’t done so yet, have a listen to the latest Disability.TV episode, where I try to work out a star-rating system for disability on television.

- Its been awhile since I posted anything biographical, but Ive been prompted by a couple of great letters to my younger self” pieces to write one myself. So, I’m working on that, too.

Enjoy the day!

Thursday, March 12, 2015

Throwback Thursday

Illustration of the time machine from the movie Time Machine.
A year ago in Disability thinking … Winter Paralympics - Thursday, March 13.

That was just last year? I'm not sure I can wait another three years to see Wheelchair Curling again.

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Wednesday, March 11, 2015

Jane Hawking’s Not-Bad Idea

Photo of a stack of newspapers with Breaking News! in large headline print
The Guardian - March 11, 2015

“The Theory Of Everything, the film about Steven Hawking that won Eddie Redmayne an Oscar this year has caught a lot of flack from the more activist parts of the disability community, including me. In brief, were tired of non disabled actors winning awards for playing disabled characters, especially when disabled actors cant get work. Plus, we hate to see tired old clichés repeated, such as the scene where Hawking … while being recognized for his astounding achievements in physics … dreams of walking again. Forget being one of the most recognized and admired physicists of all time, I just wish I could walk over and pick up a pencil.

All that aside ...

I was really impressed that Jane Hawking, Stevens first wife who is also portrayed in the film, used a gala reception at Buckingham palace, for a very traditional disability “charity”, to suggest that what disabled people in the UK really need is better support from their government. Usually, these charity “dos” are all about raising donations for a cure, and are carefully apolitical. It’s one reason why so many disability advocates shy away from traditional charities.

Jane Hawking’s proposal is pretty vague … to use funds from companies that don’t pay taxes now to fund better support services. But it is radical and refreshing for her to even mention systemic change and economic justice in a high-profile charity event.

For what its worth, I dont think we have ever heard anything so specific and political from Dr. Hawking himself, who when he talks about disability tends to stick with a very personal perspective and a somewhat blandly neutral tone. Ive always kind of liked that about him, that he neither bemoans nor romanticizes his disability. It would be helpful, though, if he had more to say about disability in general, and the status of disabled people in society.

Anyway, I just think that Jane Hawking deserves some praise for her observations, and where and when she chose to make them. More like this please.

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