Disability Thinking

Sunday, July 6, 2014

A Disability "Red Flag"

I think I have identified another one of my personal Disability "Red Flags":

It is when people with disabilities say how much they wish or hope for a cure or significant improvement in their conditions, not because they want to live easier and be more functional, but because they want to look more normal and be more socially accepted. I’m not against medical research, new therapies, or miracle technologies. What troubles me is the idea of a person taking all the responsibility for ending stigma and discrimination on themselves ... like a gay person answering homophobia by trying really hard not to “act gay”, or like an African-American who hates her heritage more than she hates racism.

Either way, it’s a choice, and I try not to judge anyone’s personal choices or motivations. I also believe it’s quite a different matter to pursue improvements that stand a decent chance of making your life easier and freer in a practical sense. Walking is, in many cases, (though not all!) more convenient than wheeling. It also helps to be able to control your disability-related quirks and oddities at times, in order to make necessary interactions easier.

But when you read articles and hear news stories about new treatments and technical breakthroughs that promise "hope" for disabled people, you tend to hear more about people’s self-image and social acceptance than you do about practical benefits.

I just feel it’s galling for people with disabilities to feel like they have to “fix themselves” to fit in better, a priority that seems to relieve everyone else of the responsibility for, you know, being shitty to disabled people. Sadly, it seems like I hear this the most from parents of little kids with disabilities, and from older children and youth with disabilities. Shame and self-loathing runs deep, and “hope” for this or that condition seems to be all about a vision of some perfect “normalcy” that’s mostly a mirage, and not even a very important goal in the long run.

Weekly Wrap-Up

Sunday, June 29, 2014

Disability In Comics

Monday, June 30, 2014

“Let Us Now Praise Famous Men"

Tuesday, July 1, 2014

Wednesday, July 2, 2014

Music For A Travel Day

Friday, July 4, 2014

Saturday, June 28, 2014

Saturday, July 5, 2014

Photo Of The Day

black and white photo of a woman's head viewed from the back left, showing a tattoo behind her ear. the tattoo is of a sound off icon

From the Pretty Little Time Bomb Tumblr blog, via The Perks Of Being Disabled.

A Little Moxie Summer Blog Hop - "The Early Years: A Letter to Myself"

Dear 13 Year Old Me:

You’re doing fine, and if you don’t listen to any of the little tips I’m about to give you, you’ll still be fine. Just keep them in mind, especially over the next ten or 15 years or so:

- Don’t blow off the idea of exploring relationships and sexuality, just because you’re convinced nobody would “want you”, and because right now you don’t actually really mind. You will think differently later on, and lack of earlier experiences can be a far greater hinderance than your physical appearance ... which, incidentally, isn't as weird as you think it is. Your default setting is to be a loner, and that’s fine, but it means you need to practice sharing your life with others, and letting them share their lives with you.

- Get away from Mom and Dad as much as possible. They are great, and I don’t mean you should literally leave them or push them away. But they have their own issues, and you could waste a lot of time tangled up in them when you should be exploring your own community apart from them.

- Learn how to work hard and work smart as soon as possible. Get a job, or at least a complex, demanding volunteer position. Look for ways to challenge yourself academically beyond what’s immediately available at school. You may have disabilities, but a lot of things come fairly easy to you, and you need to learn what it's like to do the harder things well.

- Try to meet other disabled kids and adults. Don’t try to act like you’re not one of them, because no matter what anyone says and regardless of what you’ve convinced yourself, you are. Plus, contrary to what you think now, lots of other disabled people are fun, amazing, and great to be around.

- Your disability aside, you have a lot of advantages. Don’t feel bad about using them, but don’t coast on them.

Like I said, you are doing fine. But “fine” doesn’t have to be the highest achievement you aim for. Just because you are disabled, doesn’t mean you can’t do better. Be happy, but don’t feel you have to settle for “fine” forever.

Friday, July 4, 2014

Picture Of The Day

blue-green line drawing of the Statue of Liberty seated in a wheelchair

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”?

Wednesday, July 2, 2014

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.

Tuesday, July 1, 2014

Lexicon

photo of an open book of definitions with a magnifying glass on top

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.

Monday, June 30, 2014

"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.

Sunday, June 29, 2014

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.