Throwback Thursday

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Illustration of the time machine from the film "Time Machine"
Two years ago in Disability Thinking: ConfessYour ...

I have been thinking a lot lately about opinions I have on disability culture and activism that might not be popular in the disability activist community. I would like to write about them, but I don’t want to be any more of a pedant or mansplainer than I fear I already am. One of these days I’ll figure out a way to deal with these things in an interesting and non-invasive way. It amuses me to see that I was already starting to think about this two years ago 
 
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Weekly Reading List

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Illustration of a stack of books
Disability-related articles I collected during the week to catch up on later. This week most of them turn out to be several weeks old, with a run of three on that old favorite disability topic: language.

Caley Farinas, Everyday Feminism - July 30, 2015

This article isn’t about which words to use. The writer here is specifically talking about non-disabled people who think they have more valid insights into disability language than disabled people do. So it’s not about the terminology itself, but about the kind of know-it-all spiral that anyone can get into, but which is doubly annoying when it’s non-disabled people lecturing disabled people about disability. The thing is, these same exchanges happen among disabled people, too. I, myself, have gotten into heated and pretty stupid arguments with other disabled people who don’t like the word “disabled.” In my mind, I just know that they simply lack exposure to progressive disability culture, and that it’s up to me to make them see the light. It’s a hard habit to break when you really are energized by a particular way of viewing the world.

Rick Hodges, Medium.com - July 10, 2015

For a long time, I hung in there with the term “mentally retarded,” precisely because I subscribed to the “euphemism treadmill” idea Hodges cites here. It seemed like people in that community though they could solve the stigma problem by coming up with a different term, and I thought that was a mistake. I still do, basically, and many of the alternatives to the r-word are odious in different ways … especially “special needs.” On the other hand, I think Hodges himself is a bit mixed up about disability terminology, and engages in exactly the kind of presumptuous word-policing described in Farinas’ Everyday Feminism article above. It just goes to show that it is very possible, and quite common for people to be partially right, and partially wrong at the same time about the same thing, maybe especially in the realm of disability.

“Struggling" Tumblr Blog - July 22, 2015

This Tumblr blogger gets right to the point. When I discovered that person-first language was starting to fall out of favor, I was overjoyed. 25 years ago, was taught by other disabled people that person-first was the right way to go, but I never liked it because it always sounded awkward and it was a pain to write. I don’t completely buy the philosophical argument for switching back to “disabled person,” but I like it because it just sounds better.

Stephen Ohelmacher, ABC News - August 9, 2015

This is the best brief explanation of Social Security Disability coming funding shortfall that I have seen so far. I risk being obsessed with this, but I think it is critically important that we separate the funding issue from the reform issues. I am very uncomfortable discussing better work incentives with people who basically disagree with the whole premise of Social Security, who want to narrow its scope to people they consider to be really disabled, or who only care about how much it costs. The reforms most disabled people want to see are important whether or not there’s a funding shortfall, and the two issues should not be linked.

Thom Dunn, Upworthy - July 21, 2015

There are a few apps out there that are designed to explain specific disabilities to strangers in emergencies. I would like to see an app that’s designed for anyone with any kind of disability, that we can fully customize to say whatever we think is important to say. I would definitely put one on my iPhone.

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A New Favorite

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Difficult People … on Hulu.
Stare At Shannon … on YouTube.
Shannon DeVido … website.

I just re-discovered Shannon DeVIdo. I read about her and found her YouTube Channel maybe a year ago, and then forgot to watch more of her videos. She's hilarious.





The standard thing to say is that Shannon DeVido is a funny, talented comedian, not a funny, talented, “disabled comedian,” or, for that matter, a “comedian with a disability.” She is hilarious and she does have a ton of talent and charisma, but a lot of her comedy does revolve around her disability. More precisely, her best comedy is about being a disabled woman in a mostly non-disabled world. Somehow, she highlights the “funny side” of disability, including the strange attitudes and habits of non-disabled people, and the ever-present barriers faced by disabled people in everyday life. Yet, she’s not angry and she doesn’t ridicule anyone or imply that non-disabled people are stupid. Ridicule has it’s place, and bitter can work for comedy. It’s just that Shannon DeVido’s perplexed but positive take makes her work refreshing and accessible … see what I did there? … without being trite.

Anyway, the big news is that Shannon got a guest spot on the new streaming series Difficult People. Maybe it’s a small thing, but I love the fact that the part wasn’t written for a disabled person, but she got the role anyway. That should happen a lot more often.



I wish there was more to the appearance. It would be great if they'd bring her back once in awhile. Then again, bit parts are important, too. They help people get more used to seeing disabled people in ordinary situations, with distinguishing characteristics other than being, you know, disabled.

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What Are Centers for Independent Living?

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Map of the United States and Territories
Wouldn't it be great if there was a place anyone could go to for practical information and dogged advocacy for people with all kinds of disabilities ...

... an agency near you, wherever you live in the United States

... a non-profit that can also help families, schools, government agencies, and businesses become better allies of disabled people

... a grassroots movement that combines formidable real-life expertise and personal empathy

... an organization run by and for disabled people?

Someone should definitely get busy and start an organization like that. Wait. They already did.

Centers for Independent Living are not-for-profit disability organizations that are governed and staffed mainly by people with disabilities. They are funded by the federal government, some state governments, and by foundation grants and individual contributions.

There are CILs in every state and territory in the United States. Some states have a 2 or 3 large centers serving big rural territories or large urban populations. Other states have many more Centers of different sizes serving just a few counties. Each CIL is a independent organization. At the same time, Centers are all part of a loose but extensive nationwide network, operating under a common service model and a common approach to disability.

There are several things that make Centers for Independent Living different from other disability-related agencies:

Majority Disability ... The majority of all Centers' staff and board members are always disabled. This is more than a gesture of inclusiveness, and it is certainly not a practice designed to provide employment opportunities for disabled people. Rather, it is a key to the very nature of every Center's services. Nowhere else can you get disability-related services provided by people who live with disabilities themselves.

Broad Scope ... CILs define disability broadly, and encompass the concerns and needs of all disabled people, regardless of the degree or type of disability they have, or of their age, income, gender, sexual orientation, race, or any other social identity they may have. CILs believe in the essential unity of the disability experience.

Services and Advocacy ... All Centers do both services and advocacy. In fact, the two are interrelated. While providing services, you discover systemic problems that call for policy changes through advocacy. At the same time providing services every day, dealing with peoples' individual problems and goals, helps ground CILs' advocacy efforts in every day reality. Few other disability organizations are as committed to both services and advocacy as CILs.

What CILs Don't Do ... What Centers don't do is also important. CILs do not run residences, group homes, assisted living facilities, special schools, or sheltered workshops. In general, they do not seek to create separate, specialized services for disabled people, but rather work to make existing services accessible and equally satisfying for all, including people with disabilities.

I am prejudiced. I worked for 23 years at a Center for Independent Living. For 14 of those years, I was the Executive Director of one. I still do grant-writing work for my local CIL. I still think CILs are as close to being the perfect organization for disabled people and their families.

I also know that CILs aren't perfect. For one thing, with literally hundreds of independently-run Centers operating, they aren't as consistent as one might wish them to be. And CILs do have both strengths and weaknesses. The following is my personal perspective on both:

Weaknesses

The most common complaint I hear from people who try Centers and come away disappinted is that they were unable to help with some very specific, very urgent problem. While Centers usually can get things done in a pinch, they do tend to be better at helping with long-term goals than with emergencies. CILs are not crisis centers.

Centers' struggle for funding can sometimes become a higher priority than their advocacy goals and even their values. It is still quite rare for a Center to "sell out," but it is easy to get distracted off your main mission when money is available to do something that is only semi-related.

Because CILs are so grassroots and rooted in local communities, they can sometimes fail into the trap of wanting to be admired more than wanting to be effective advocates. It's usually possible to be a strong advocate and be well-liked, but it isn't easy. Being considered a respected colleague ... a "team player" by all the other bigwigs in a small community can be awfully tempting.

There is always a risk when you hire people for their life experience more than for their professional credentials. On the one hand, you often find untapped wells of talent, wisdom, and compassion. On the other hand, you may find you have to build up basic administration and collaboration skills, sometimes from scratch. As a result, CILs at times can be a bit shaggy or sloppy with what is broadly termed "professionalism."

Independent Living grew out of a genuine grassroots movement, but was first built mainly on the aspirations of relatively privileged, well-educated, middle-class disabled people. Although there is nothing in Independent Living that is incompatible with other people and goals, it sometimes feels relevant to people with lower incomes, people with cognitive and mental disabilities, and people from more diverse cultural backgrounds.

These are not inherent weaknesses. They are inherent risks of weakness. And most Centers are more open to criticism and change from the people they serve than most other non-profits. After all, most of the staff and board members of CILs have had lots of experience dealing with the failings and shortcomings of agencies and services they rely on.

Strengths

Centers have a unique authenticity and credibility because they are staffed and governed mainly by disabled people. The "peer" connection thing doesn't work for everyone, but overall it is remarkably effective. One of the biggest mental barriers for disabled people is believability. They often just don't believe what non-disabled people tell them they can achieve. But when the person telling you has disabilities, too, then the message is just more believable.

Centers provide a structure for organized disability advocacy that can be reproduced anywhere. Independent Living philosophy, service models, and operating principles are firm enough to give structure to a particular approach to disability, and flexible enough to work in any kind of community.

Centers across the country are diverse in their services and activities, but share a common philosophy of disability and operating values. The tools are the same wherever you go, but the goals and priorities vary to fit each community's unique situations.

Centers make fulfillment of each individual’s goals a higher priority than what society says is good for them. This is critical. CILs definitely share a point of view on disability. But part of that point of view is that no ideology should replace what each individual cares about and wants to achieve. CILs are often the one type of institution that will always stand up to support what a disabled person chooses for themselves.

Although CILs aren't there specifically to provide opportunity for the disabled people who work at them, they do constitute a unique and varied career path for disabled people who want to devote themselves to serving the disability community. Plus, Centers are often proving grounds where disabled people with limited work experience can hone their skills and then move on to greater success in other fields of employment.

After two and a half years of disability blogging, I feel like it is finally okay for me to reflect more deeply on Independent Living and actually encourage disabled people and their families to find their nearest CIL and get involved. I am curious to hear feedback on readers' experience with Centers for Independent Living.

Meanwhile, check out these links for more information:

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Throwback Thursday

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Illustration of the time machine from the film "Time Machine"
One year ago in Disability Thinking: The George Takei "Controversy": My Two Cents.

I recently listened to a terrific interview with George Takei. They didn’t mention the “Miracle In The Alcohol Asile” meme, but they did touch briefly on Takei’s use of humor to help deal with injustice and oppression.

I have to admit, reading about it all again, it does seem like maybe we made a bit too much of this. But I stand by the core issue, which is that Mr. Takei, who is very tuned-in to social justice issues, apparently missed at least two different ways this meme was a stereotypical slam on disabled people. It wasn’t the worst offense in the world, but it deserved some kind of acknowledgement before the public shaming.

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Weekly Reading List

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Illustration of a stack of books
I am a little late in getting this weekly list up. Most of it is a continuation of last week’s ADA 25th Anniversary observances:

Ashleigh Livingston, Press-Republican - August 2, 2015

The local Center for Independent Living, where I used to work, is essentially asking the City of Plattsburgh, New York to do a new ADA Self-Evaluation and Transition Plan. The local newspaper did a pretty good article about the effort, and about accessibility here 25 years after the ADA passed.

Joseph Shapiro, National Public Radio - July 31, 2015

I am so glad to see a more in-depth story of Haben Girma, who introduced President Obama at the White House’s ADA Anniversary event. I have no trouble saying that she is and inspiration, in all the best ways and none of the gross ways the word is sometimes used.

Philip Raphael, Richmond News - July 31, 2015

It seems like a good idea to pass a Canadians with Disabilities Act modeled after the ADA. I don’t know if it is it would address the most urgent issues for disabled Canadians, but I suspect it would get a decent amount of support from all of the federal parties. What caught my eye is that Rick Hansen in my mind is more of a traditional “inspirational” disabled celebrity … inspirational in the super-crip, syrupy way that makes me gag. Yet, he’s using his notoriety to promote real, practical changes in policies and laws. It would be great if more disabled people who become famous for superficial or personal reasons would redirect the public attention to they have earned towards practical disability issues.

Ellen Seidman, Love That Max - July 27, 2015

I am adding this to the long list of think pieces on the ADA for two reasons. One, it’s by a parent of a disabled child, and I’ve been curious about how “special needs parents” view the ADA. Two, Ellen makes a strong point about the fact that it takes massive time and resources to pursue an ADA violation claim with any sort of credibility. It takes money, but also long-term commitment and laser-like focus. Most disabled people and their families just don’t have these resources.


Speaking of parents … Carly Findlay did all us disability bloggers a huge favor by helping map out the tricky philosophical and ethical territory around parents blogging about their kids with disabilities. I really appreciated her strong advocacy and warnings about privacy and dignity, but also her understanding about why parents might be tempted to cross the line.

Alice Wong, TalkPoverty.org - July 30, 2015

The Disability Visibility Project is an absolutely essential stop on any tour of disability on the Internet. It should be a daily stop for anyone interested in disability issues. Here, curator Alice Wong links her project with the current most pressing disability issues … the work left to be done, and maybe the next big steps for the Disability Rights Movement.

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Disability.TV - Ep. 27 - Seinfeld, Part One

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Disability.TV Ep. 27, with Seinfeld poster
“Expertly plotted and beautifully written, Seinfeld was, above all, a celebration of juvenility, a paean to the sense of community that can arise when a group of wholly irresponsible inadequates bonds over a shared scorn for / loathing of the outside world.” — Sarah Dempster, The Guardian

In this episode of DIsability.TV and the next, we will examine how the show handles disability themes and disabled characters. What should we make of potentially offensive and upsetting disability stories, in a comedy about dispicable people? When is bad behavior on TV a satire and condemnation, and when is it just plain bad? And not for the first time, we ask what happens when disabled characters are given no voice, and used as mere props and plot devices.



 Show Notes


Wiki Sein ... A guide to all things Seinfeld.
“Crazy” Joe Davola (Peter Crombie)
Mickey Abbott (Danny Woodburn)
Laura The Lip Reader (Marlee Matlin)