Weekly Wrap-Up

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Spring Cleaning ... Time For A Musical Digression

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So, in lieu of the usual disability blogging, here’s a video I’ve 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:

Let's Be Complainers

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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, (they’re out there, believe me!), or who wildly misunderstand what it says, direct them to the easy-to-remember "www.ada.gov”.
And if you don’t get a reasonable response, go ahead and file a complaint, using the new, (this month!), Justice Department online complaint form.
Don’t 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 won’t go away on it’s 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 let’s all quit complaining, and start filing actual complaints.
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Newbie FAQs: Advice For Children And Youth With Disabilities

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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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Education, Segregation, Isolation

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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. It’s rare to see such an unequivocal statement in favor of inclusion.

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

- It’s 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. 

- It’s 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, I’m 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 it’s 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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Advocacy Or Fundraising ... Demanding Or Asking?

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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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 Facebook

Disability.TV Ep. 21 - Reality TV

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

Click here for transcript

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).

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