Thursday, March 26, 2015

Newbie FAQs: Advice For Children And Youth

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.

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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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Monday, March 23, 2015

Twitter This Week

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.

Comment:

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.

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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.

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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.