Picture Of The Day

From the Designabilities website.

I don’t know who created this image in the first place, but it’s been kicking around for quite awhile, in various magazines, newsletters, and disability-related websites. It is one of the first disability rights images I remember seeing. 

Independence Checklist: Followup

I’ve already found another item to add to the Independence Checklist, inspired by a blog post by Smart Ass Cripple:

Do you get to decide who sees you naked?

Independence Checklist

Many years ago, I attended a disability conference where a speaker described a sort of checklist people with disabilities can use to figure out whether they are truly “independent”. The idea was that there are many disability service and support models that include certain “freedoms” and “choices” that feel like independence, but which can easily mask a fundamentally dependent situation. The speaker asserted that his checklist were indicators of genuine independence, not just superficial “privileges”. I can’t remember who the speaker was, or recall every item on his list.

The checklist that follows is my attempt to re-create and expand on the idea. Are you “living independently"?

- Do you have a lock for the door to the place you live, where only you or someone you choose have the key? Do people have to knock and ask permission to visit you?

- Are you responsible for your own finances, regardless of where the money comes from?

- Do you own your eating utensils, towels and washcloths, bedsheets and pillowcases?

- If you live with another person or people, are they people you chose to live with, and who chose to live with you?

- Do your helpers mostly work around your schedule, or are your routines mostly determined by your helpers’ schedules?

- If you did several things people disapproved of, would you risk losing services you need?

- Would you be permitted to eat Oreo cookies for dinner, if you wanted to? (I call this The Seinfeld Condition … after one of comedian Jerry Seinfeld’s famous bits).

- Would you be able to make a spur-of-the-moment trip to a local convenience store, if you got a sudden, intense, 3 AM craving for Beef Jerky?

- If you and another consenting adult wanted to have sex or get married, could you do so?

- Do you have more or less the same rights and responsibilities as non-disabled people your age?

- If some of your rights and responsibilities are controlled by other people, is that by your choice?

Notice that none of these items are about where you live, whether you have money and from where, whether or not you need or have everyday self-care help from others, or how physically or mentally capable you are. A quadriplegic can live independently. So, to some extent, can someone with significant intellectual disability. And, someone with fairly mild disabilities can just as easily live very dependently, their lives largely controlled and regulated by others.

What other items would you include on your “Independent Living Checklist”?

Music For A Travel Day

I’m on the road today, so no posting, except for this, one of may all-time favorite songs, by Jonathan Richman and The Modern Lovers.

Lexicon

Here is my first attempt at writing some definitions for my Disability Lexicon. They're not funny, and I'm not sure it's going to be feasible to make all the definitions funny. I may just settle for accurate and clear. Please comment, suggest different interpretations, or better yet, offer your own, alternative definitions!

Eventually, I want to put all these definitions into a Wiki.

Differently-Abled

One of several alternative terms for “disability”, consciously coined to replace the perceived negativity of “disabled”, and assert the idea that “disabilities” are only differences, not necessarily disadvantages.

The term received mixed reviews among disabled people, and is rejected by most disability rights activists and participants in disability culture.

Some view this term and terms similar to it as patronizing. Others say it fails to acknowledge the real personal and social hardships of disabilities. It is generally intended to express a more progressive, respectful view of disabled people. Yet, it is possible that “differently-abled” was made up not by disabled people themselves, but by non-disabled progressives and academics who knew little about real-life disability experience. [See also: physically challenged, disABLED, special needs].

Ableism / Disableism

“Ableism” is a broad term for any form of disability-related prejudice. “Disableism” is an equivalent term more often used in the United Kingdom.

People First Language

An approach to disability terminology in which the word “person” comes first, modified by “disability” or a specific condition, as in “people with disabilities” and “person with a Cerebral Palsy”.

The idea has two main components:

First is to emphasize that disabled people are, first and foremost, people … with dignity, rights, and agency … rather than being thought of as simply a condition to be studied and examined impersonally.

Second, “people first” language, for many, expresses a specific way of understanding disability, not as an all-encompassing identity, but as an adjunct aspect of an individual with many other traits and qualities.

“People first” language, along with using the word “disability” has been the most broadly accepted “ regressive  or “politically correct" way of referring to disabled people, for around the last 25 years. However, recently, a counter-movement has arisen arguing that “people first” language doesn’t adequately reflect the realities of living with disabilities. The idea is that separating the disability form the person doesn’t accurately reflect the degree to which many peoples’ disabilities become integral, inseparable parts of their lives and personalities. Others argue that to say “I am disabled” more accurately reflects the impact of ableism and stigma imposed by society.

“People first” remains the standard practice in the community at large, and among many established disability advocacy groups, while “disabled” is gaining ground among activists and people more involved in disability culture.

Quote

“You know, I hope you know anyway, that my default setting is pretty positive. But I have to say it’s really rather hard to try and find a way of putting a positive gloss on that sequence of events. Would you like to have a go?" -- Ian Fletcher (Hugh Bonneville) in the BBC TV series, Twenty Twelve.

I share this quote because it is such a perfectly passive-aggressive putdown, and I can’t help imagining a disabled person using the same words in response to bureaucratic or support service breakdowns.

"Let Us Now Praise Famous Men"

Pioneer in aiding disabled mourned

Bob Gardinier, Albany Times Union - June 28, 2014

I ran across this article almost by accident, but I found it fascinating in I’m sure a completely different way than what was intended.

Let me say first that I don’t know anything about Mr. Fitzgerald, or about the agency he apparently gave so much of himself for, the Center for Disability Services in Albany, New York … not that far, really, from where I live. For all I know, he was probably completely sincere and well-intentioned, as selfless as his friends suggest he was, and even progressive in his view of disability, at least in the context of his life and times.

That’s just it though. The whole article feels diffused with a very old-fashioned, back-slapping, golf-tourney, rich guys doing good vibe that seems more in line with a Jerry Lewis Telethon than with an ADAPT protest, or even a modest Center for Independent Living.

I’m really not trying to be mean, but the article, unintentionally highlights not only a difference in philosophy … the Center has a sheltered workshop where Mr. Fitzgerald’s own son works, for God knows how long … but in tone and personality between “your grandfather’s” disability agency, and the consumer-driven, activist organizations of today. Except that it isn’t really yesterday and today. In many cities and towns the two kinds of disability agencies live side by side, rarely battling each other directly, but eyeing each other with suspicion and perplexity. In general, they also tend to have entirely different bases of support, and cleanly separated spheres of influence and awareness.

Anyway, I realize that’s a lot to get from a the obit for a local benefactor, but boy did it come through to me loud and clear.

Disability In Comics

With great power comes great disability

Kathleen Hawkins, BBC - June 24, 2014

(Via Media Dis & Dat)

I am fascinated by pop culture, but I have never been a comic book person, so I really appreciate this BBC article about the history of disabled characters in comics. It seems to be inspired by the recent addition of Harper in the Archie series, but it looks back at some successful and short-lived disabled characters and superheroes, including Daredevil and Oracle, (a.k.a. before her injury, Barbara Gordon or “Batgirl”).

I can’t tell from this article, or my superficial exposure to comics traditions, whether disabled characters in comic simply follow the same disability tropes seen in other media, or if the comic book medium fosters either much more sophisticated depictions, or much less. It does seem like the X-Men series may be richer in disability themes than any other of the explicitly disabled characters in comics and superhero universes. It also seems like there is still plenty of room for at least a few more nuanced, developed disabled comic book characters.

Weekly Wrap-Up

Sunday, June 22, 2014

• Things That Make Me Happy

Monday, June 23, 2014

• Blog Changes

Tuesday, June 24, 2014

• A Little Moxie Summer Blog Hop - "My Connection with Disability: An Introduction"
• Olmstead, With Charts!

Thursday, June 26, 2014

• More About Olmstead
• Knope’s Bold Idea

Friday, June 27, 2014

• Disability and Politics
• A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

Saturday, June 28, 2014

• Great Video Series

Great Video Series

A little over a week ago, I ran across this video on bullying by the Australian group, Cerebral Palsy Alliance. I was working on something else at the time, so I put it my reading queue, and promptly forgot about it.

I finally just watched it, and I'm really impressed. Most disability awareness campaigns are targeted mainly to non-disabled people. These videos deliver separate messages to two different audiences at the same time ... greater understanding for non-disabled viewers, and believable, credible empowerment for people with disabilities, especially those who are young.

Other videos in the “Making It Real" series:

• Personal Hopes
• Relationships
• Everyday Challenges
• Achieving Your Goals
• Building Confidence

A Little Moxie Summer Blog Hop - "Coming to Terms with Disability in My Life"

This will be an uncharacteristically short blog post for me, because I kind of deal with this issue of “coming to terms” all the time at my blog, Disability Thinking. Just visit there and browse, and you should be able to figure out how I have and have not come to terms with disability in my life.

I will only add this …

I am 47 years old. I have had disabilities all of my life. I have been exposed to a wide range of different ideas about disability, approaches, disability cultures, and philosophies. Yet, although I mostly relate to a generally “positive” view of disability, I can’t entirely buy into the idea that disability is “great” or “awesome” or “special”. Nor does it feel right to say it’s a “tragedy” or “handicap” or “illness”.

To me, disability isn’t a good thing, or a bad thing. It is just a thing. I used to think that was a cop-out, but more than ever, I really think that’s my answer … the terms I have come to with disability. Any other answer seems off-target and reductive.

Disability and Politics

Are you a Democrat or a Republican? A Progressive Conservative, Liberal, or New Democrat? Labour, Tory, Liberal Democrat, or whatever that UKIP thingy is? Are you a liberal or conservative, or perhaps a libertarian?

If you're not sure, or if you think you could do with a bit of a check-in on your political views, take this new Pew Research Center questionnaire to find out your approximate political position, at least in relation to US politics. Be sure to note the emphasis on choosing the answers closest to your beliefs. You will probably find several questions where you like aspects of both answers.

I also recommend this Vox.com article about the Pew Center’s new report on politics in America, which, among other things, subdivides the traditional red vs. blue, liberal vs. conservative formulation into more specific viewpoints. It’s an interesting read.

Then ask yourself, "Does my disability experience have any affect on my general political views?" Or, do your political views influence how you understand disability?

Sometime in the next few days, I plan to post something about how I “scored” on the Pew questionnaire, and how that relates to my understanding of disability.

Knope's Bold Idea

I just re-watched Season 4 of Parks and Recreation, in which Leslie Knope runs for the Pawnee, Indiana City Council. I had totally forgotten the interesting little disability story in Episode 17, which includes “Ramp Up Pawnee”, candidate Knope’s proposal to build a ramp on every set of stairs in Pawnee, in a bid to win the essential Senior Citizen vote.

Considering it is only one theme in an otherwise packed episode, there is a lot to chew on, especially for disabled people who can relate to wheelchair accessibility problems:

- There is the idea itself … that a local politician running for office would think that pledging to improve a town’s accessibility was a good way to win votes, so much so that her opponent felt forced to make a “better” proposal to address the same problem.

- On the one hand, it’s so unusual that the joke fits well into “Parks & Rec’s” absurdist tone. How many real-life politicians make physical accessibility improvements a key priority? It’s practically unheard of, and the completeness of Leslie’s proposal is as absurd as it is awesome.

- On the other hand, it’s not absurd at all. Seniors are an important voting bloc, and accessibility is potentially an important issue for them, not to mention younger people with disabilities. The fact that it’s kind of a joke on the show just underscores what an untapped opportunity it is in actual politics.

- Leslie’s opponent, rich kid Bobby Newport, counters with a “better” proposal … install lifts rather than ramps. I guess it’s better because it’s more expensive. The thing is, in most cases, ramps are easier, and lifts are a last resort when ramps are infeasible. Lifts are, generally, a pain in the ass. On the show, it’s just accepted that lifts are better.

- For some reason, I just love Leslie’s slogan for her ramp initiative: “Stairs are a young man’s game!” It’s not even very accurate, but I like that there’s a hint of pride to it … almost like saying, “Stairs are for chumps”.

- “Not enough ramps is the number three complaint among Pawnee seniors, right behind ‘Everything hurts,’ and ‘I’m dying.’” – Leslie

- When I Googled the episode, I found this fantastic website for the Knope 2012 campaign, including a page on Leslie’s proposal, “Ramp Up Pawnee!"

As has often been said, these brief story lines are a great way for TV shows to help “normalize” disability and disability issues.