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.

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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.

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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.

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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.

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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!


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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.

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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.
 
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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.)

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