Tuesday, March 31, 2015

Video Of The Day

Jared Sosa, BuzzFeed - March 29, 2015

I have to offer a light rebuke to Mr. Sosa, for saying that Santina has “been in a wheelchair since she was 5 years old.” I’m not sure, but I suspect that at the time of filming this, she’d been in a wheelchair since she got up that morning.

I found this because Tonia of "Tonia Says linked to it and gave her own interesting answers to the questions Santina answered.



Two Ways To Improve Disability Journalism

Fedora hat with "PRESS" card stuck in the hat band
It would be so nice if journalists would stop using weird synonyms for disabled” … like handicapped, mentally challenged, and wheelchair-bound. We say it all the time, but they keep appearing in news stories. Just say “disabled” and leave it at that.

Now that we have that out of the way, there are two other ways journalists can improve coverage of disabled people and disability issues. These are, I think, a bit more important:

1. Always look into the potential systemic, structural aspects of seemingly individual stories.

Personal stories of adversity, struggle, and triumph are appealing, but a lot of the problems disabled people face have their roots in laws, policies, and practices that affect other disabled people, too. Yet, many stories about disabled people fail to even address ways that individual disability problems might be solved in more permanent, systematic ways. This reinforces the rather lonely and discouraging idea that dealing with a disability is a solo endeavor. It also gives cover to people and institutions that perhaps should be doing more to make life better for all disabled people.

Example: The story of an Austin, TX high school student with Cerebral Palsy who raised over $80,000 to install push-button automatic doors at his high school. Its a legitimately uplifting human interest story, but a reporter might have asked why the school wasn’t paying for the modifications, since accessibility is part of schools’ responsibility under the Americans with Disabilities Act.

2. Never print or air a story about disabled people without talking to and quoting disabled people.

The principle here is Nothing about us without us. It is a phrase with a long lineage in the disability rights community, but it is just as applicable in journalism. Normally, reporters will at least try to get a direct quote from every individual named in a story, to get their perspective on the issue and not just another persons impression of their perspective. When it comes to disability stories, however, the standard seems to slip. Its quite common in stories about disabled people to never hear directly from disabled people. Instead it seems to be considered acceptable to have parents speak for disabled children or youth, and agency staff to speak for their clients. It is true that a few disabled people cant speak for themselves, but that is a very small number if you allow for speaking through non-verbal or adaptive means. Most people with intellectual disabilities, too, have meaningful things to say about their lives and experiences. In fact, a reporter at times may be in a unique position to give a public voice to people who are, intentionally or not, often left out of discussions that have a direct impact on their lives.

Example: TV coverage of the Bilodeau brothers, the Canadian Olympic Freestyle skier and his brother, who has an intellectual disability. Frederick, we are told, is a huge fan of his Olympian brother Alex. On camera he seems like he could have meaningful, specific things to say, but he is never interviewed, and none of the reporters even mention any attempt to speak to him directly. This happened the same way over multiple interviews with the athlete and the rest of the family, over two successive Winter Olympics. There is every indication that Frederick absolutely does idolize his brother and loves watching him win. The point is that he has never voiced those feelings to the world, in his own words, and we don’t know why.


Monday, March 30, 2015

For Senate

Mark Murray and Carrie Dann, NBC News - March 30, 2015

As a Democrat and a disabled person, I am very excited about Rep. Tammy Duckworth running for Senate. I think its also interesting that her opponent, Sen. Mark Kirk, is also disabled  recovering from what I recall was a very serious stroke. How will the disability factor play out when both candidates are disabled? Do Duckworth and Kirk have different perspectives on their disabilities? Do they talk about them differently from each other? Or, will their individual approaches to disability just cancel each other out, making disability entirely irrelevant? I look forward to finding out.

I am also thinking that it might be fun to start following all of the major 2016 election campaigns that include candidates with disabilities. I don't tend to think that having more disabled people in Congress or more disabled Governors would necessarily make for better policy, but more of us being in office might have broader, more abstract positive effects on the disabled community.

In any case, following the races might be fun.


Saturday, March 28, 2015

Spring Cleaning ... Time For A Musical Digression

So, in lieu of the usual disability blogging, heres a video Ive been watching daily for over a week now, of Kim Gordon and the surviving members of Nirvana performing at the Rock and Roll Hall of Fame Induction:

Sonic Youth has been one of my favorite bands since Goo came out in 1990. From there I went back and checked out the epic Daydream Nation, and I was hooked. Kim Gordon was always my favorite member of the group, partly for the usual hetrosexual male reasons, but also because she seemed so enigmatic. She recently published an autobiography, and is making the rounds of various culture shows and podcasts. I listened to her interview on Marc Maron’s WTF podcast, and now I want to hear more from her. For now, I’ll just say that I hope I have half of Kim Gordon’s energy and creativity when I am 62, though there’s no way I have ever been a 16th as cool as she is.

And here is my favorite Sonic Youth performance video:

Friday, March 27, 2015

Let's Be Complainers

Nobody actually likes a complainer, even when they're right. That's one reason why relatively few disabled people ever actually complain in a meaningful way.

We should never feel bad about making informal and formal complaints about poor accessibility or disability discrimination. Complaints are not lawsuits. I’m not suggesting they are pleasant, or that a business you file a complaint about will be totally cool with it. They’ll probably be offended and hurt. But later they may be a little embarrassed, and that’s a good thing. We need a little more shame and feelings of inadequacy in business and local governments when it comes to ADA compliance. In most cases, the worst thing that will happen if you file a complaint is that someone will get a stern but informative notice from the U.S. Department of Justice. The won't be fined or go to jail, and it may not solve the problem right away. But the Justice Department gets a better picture of compliance around the country, and ADA violators will know that they are noticed.

By all means, try to work it out person-to-person at first. Point people to the resources easily accessible online on how to make buildings more accessible, and how to accommodate workers with different kinds of disabilities.
If you run into people who have still never heard of the ADA, (theyre out there, believe me!), or who wildly misunderstand what it says, direct them to the easy-to-remember "www.ada.gov.
And if you dont get a reasonable response, go ahead and file a complaint, using the new, (this month!), Justice Department online complaint form.
Dont forget the customer review” option. There are at least two online databases where you can rate the accessibility and responsiveness of any business that can be mapped. Try one or both of these two sites:
I feel very strongly that ableism wont go away on its own, through everyone becoming more aware. We have to make it go away, and we have the legal and informal tools to do it. The only thing really holding us back, I think, is our own hesitation. So lets all quit complaining, and start filing actual complaints.


Photo Of The Day

Vintage, sepia tone photo of a young man in an old-style wheelchair, wearing a suit and holding a cane and bowler hat
I love vintage disability photos!

Thursday, March 26, 2015

Newbie FAQs: Advice For Children And Youth With Disabilities

FAQs in big three dimensional blue letters, with a computer mouse
What Do Children And Youth With Disabilities Need To Know About Disability?

There are thousands of ways to answer this question. Most of them are based on a few core ideas about disability. These are ideas that don’t always come naturally to young people with disabilities or their parents, which is why I think it’s a good idea to spell them out.

- Physical access and accommodations to your disability aren’t personal favors or privileges. They are rights you have as a citizen. No matter what your disability is, or how “severe” it is, you have the right to go everywhere non-disabled people go, and do everything non-disabled people do when they get there.

- You may need help from other people all of your life, but that doesn’t mean you have to make people like you all the time. It’s good to be kind, polite, and cheerful, but you can also be angry sometimes, sad sometimes, grumpy sometimes. It’s also okay to decide that you don’t like someone. You won’t be abandoned just because you made a caregiver angry. You are not a burden. You are a person, and you don’t have to “earn” your care by being a perfect angel and never complaining.

- It’s good to make careful decisions about the things you want to do, and how you use the energy and resources you have. But don’t give up on exciting opportunities because you think might need help and you don’t want to be a bother.

- You don’t have to be able to do everything by yourself, exactly the way other people do things, to be independent and successful. It’s okay to do things differently, and it’s okay to get help. Independence is about making your own decisions and organizing your own life, not being able to walk or tie your shoes.

- There are literally millions of people with disabilities all over the world who have an idea of what it’s like having your disability. Don’t turn away from others with disabilities because disability makes you sad, or because you think it will keep you from fitting in and being more “normal”. Other disabled people can be a great source of advice, friendship, and support you can’t really get from anyone else.

Incidentally, these are pretty important ideas for adults new to disabilities as well.

Does anyone have other ideas? Share them in the comments!


Throwback Thursday

illustration of the time machine from the film "Time Machine"
A year ago in Disability thinking ... A Ventilator In A Fraternity House.

I need to do more biographical posts.


Wednesday, March 25, 2015

Education, Segregation, Isolation

Stick figure illustration of person with graduation cap sitting on top of a stack of books
Mike Krings, KU News Service, The University of Kansas - February 10, 2015

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

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

- Its great to see full inclusion strongly endorsed without the usual caveats and reservations.

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

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

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

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

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

Tuesday, March 24, 2015

Advocacy Or Fundraising ... Demanding Or Asking?

Austin High School, Austin TX
(Via the Disability Visibility Project Facebook Page)

I thought about this story a lot yesterday ... not about the honored student-produced video, but rather what the video was about.

Why didn’t Archer Hadley, his parents, and his classmates petition the School Board to install automatic doors as a basic accessibility feature, to comply with the Americans with Disabilities Act?

Maybe they did. Maybe the fundraiser was a fall-back strategy after advocacy failed. Personally, I doubt advocacy was ever really considered. It seems like everyone involved ether consciously or unconsciously kept this whole matter squarely in the realm of a personal quest … inspiring, maybe educational, certainly not confrontational. It happens a lot.

Why do non-trivial numbers of smart, energetic disabled people like Archer choose to address systemic barriers with fundraising and “awareness” campaigns instead of advocacy? Sometimes they are deliberately diverted this way by people in power who would find an advocacy campaign embarrassing, awkward, and of course expensive. What interest me more are the cultural and emotional reasons. I can’t read Arthur’s mind, but I have some thoughts of my own about why things go this way so often:

- To some people, advocacy is energizing, but for others, it seems rude, ridiculous, or scary. For some people, fundraising and game-ish “events” for a cause are fun, familiar, and sociable, while serving a useful purpose. For others, these activities feel either like begging, or, conversely, like an excuse for well-off people to have a party. In other words, advocacy and fundraising come with cultural associations, and appeal in different ways to people with different personality types. I get the feeling that Archer comes from a culture that disapproves of public advocacy, while praising fundraising and awareness events.

- A lot of people can’t imagine solving a problem through legal or political avenues. Not just because they are intimidated, but also because changing “the system” seems impossible, and the efforts to do so feel futile. Getting your family, friends, and neighbors mobilized to raise a specific amount of money, on the other hand, is at least a lot simpler, and the results are more likely to be exactly what you wanted them to be, since you call the shots and there’s no need for negotiations or compromise. It’s why Bill Gates funds a charity to solve the worlds problems, instead of running for office. On a much smaller scale it may be why Archer saw a problem affecting himself personally, and chose a more “accessible”, person-to-person approach instead of trying to navigate a maze of bureaucracy, mostly likely having to settle for one only automatic door, or maybe reduced opening force on all the doors ... better maybe, but not best.

- I think a lot of teenagers with disabilities as significant as Archer's have a genuinely hard time fully believing deep inside that they have the “right” to full access and equal opportunity. I’m not suggesting their self-esteem is in the dumps … though for some it may be. I’m saying that a teen with so many very obvious physical impairments may well feel that being in everyone else’s debt and relying on kindness and generosity is just part of the deal. I felt that way when I was Archer's age. At the time I would have said it was just common sense, that someone “like me” couldn’t realistically expect everything to be open to me. Which is not to say that I didn’t want things to be better. Just that I couldn’t conceive of presenting the really big improvements as anything but humble requests.

How we choose to deal with the problems and barriers of disability says a lot about our culture, our personalities, and where we are in our journey with disability.

(Note: I originally have the young man's name as Arthur, which was a misread on my part.)



Monday, March 23, 2015

Disability.TV Ep. 21 - Reality TV

Disability.TV logo on the left, Reality TV illustration on the right

Emily Ladau, The Disabiligy Dialog

Emily Ladau, Words I Wheel By - August 19, 2014

Emily also mentioned another article by her blogging colleague, on little people having their pictures taken by strangers in public:

Leah Smith, The Disability Dialog

See more of Emily's writing at her own blog, Words I Wheel By, and the Center for Disability Rights’ The Disability Dialog blog. You can also find articles and blog posts by Emily at The New York Times, Huffington Post, and many other disability blogs and publications. You can hear more of Emily podcasting at Disabled Girls Talk, which she co-hosts with Maddy Ruvolo.

Emily Ladau is also on Facebook and Twitter (@emily_ladau).

Reality Shows mentioned in the podcast:

Hear More and Subscribe:

If you are so inclined, please leave an iTunes or Stitcher review. Positive reviews help more people discover the Disability.TV Podcast.


Sunday, March 22, 2015

Saturday, March 21, 2015

"This chair is my white cane. Where's yours?"

Tonights #FilmDis discussion on Twitter (9 PM Eastern) will be about disability on television. That got me thinking about whether I have a favorite disability on TV scene. I think the Ironside scene above might be the one for me. Its from Season 1, Episode 11, Light At The End Of The Journey. Chief Ironside works with a blind woman to identify and catch a murderer, while fending off her over-protective fiancé.

I could do without the syrupy musical score, but the scene itself is amazingly complex and sophisticated, especially for 1967. For one thing, it is a very rare example of peer-to-peer mentoring. Usually, TV and movies tell us that it takes a non-disabled person to snap a disabled person out of their self-pitying funks. Ironside is tough and confrontational here, but hes got credibility from his own disability. Its also remarkable for a mainstream TV cop show to draw such a smooth connection between the experiences of blindness and physical disability.

The bonus is how Ironside pinpoints the sexism involved, too. He even violates the man to man code and focuses on Norma, showing first disapproval, then open hostility towards her fiancé when he becomes aggressively controlling.

If you watch other episodes of the original Ironside, youll see that while Ironside’s disability is always there, never hidden, it rarely plays this big a role in the story. That also helps make this scene, and this episode, more powerful.



No Glee

Promotional poster for Glee
Glee ended last night, and I didnt watch it. I havent watched Glee consistently since the end of Season One. I adored the Pilot episode, but like Vox.com’s Todd VanDerWerf, I found that my crush faded quickly after that first date.

Mostly, I loved the music, (glee club covers of pop hits and classics), but another thing that drew me to Glee was the inclusion of a main character who was a wheelchair user  Artie Abrams, played by the (non-disabled) actor Kevin McHale. When Glee started in 2009, just seeing a character with a disability on a TV show seemed like progress to me. Later on, I started to notice inaccuracies and troubling themes in Arties character. You could tell he wasnt really a paraplegic. Its not just that I knew it for a fact, I could see it and feel it, which isn’t good when youre trying to make the audience feel that you are your character and not just an actor in a costume. Artie had his interesting moments, but tended to fall back on cliché, like the dream sequence when he got out of his wheelchair to dance.

Then there was Becky Jackson played by Lauren Potter, an actor who actually does have Down Syndrome. At first it was refreshing to see a disabled actor playing a disabled character, and a cognitively impaired character not presented as a sweet little angel. But, Glee took it too far too many times. Beckys crudeness and weird alliance with the evil Sue Sylvester came to seem like a nasty gimmick instead of mold-breaking.

Theres more I could say. Cheryl Green and I did say more in our Disability.TV Podcast conversation about Glee. Click and listen. You will notice that our dislike of the disability portrayals on Glee is more intense exactly because we both sort of loved Glee. Or rather, we loved the start of Glee, and the idea of Glee. The show had a lot going for it, including a terrific setup to examine disability, along with other ways people can be socially marginalized, then empowered through friendship and teamwork. Instead, Glee went for cheap, easy laughs, leaned on clichés, and indulged in the same stigmas it supposedly fought.

Sometimes that works. Some shows manage to satirize and criticize prejudices while playing on them, but it takes care and control. Part of what made Glee exciting at first was its volatility. It seemed like it could veer out of control at any moment. Often it did. Maybe its a Ryan Murphy thing. American Horror Story has a similar problem. Its wild enthusiasm tends to overwhelm any sense of control or care. Both series have great moments even great disability moments  but they seem almost accidental. And in the next scene, old stigmas take center stage again, because, you know, why not?

I guess what Glee taught me about disability portrayals is that its not enough to just throw disabled characters into the mix and have them do a few surprising things. You have to pay attention to what youre doing and how youre doing it. You dont have to be dull and “politically correct, but you do have to give a damn, and focus.



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


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.


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.