Tuesday, May 20, 2014

Best Disability Article Read In Bed On My iPhone When I Couldn’t Get To Sleep

Caitlin Wood, The Hairpin - September 25, 2012

I didn’t even have my glasses on. Reading stuff on my iPhone, in bed, in the dark, is my last-resort move to combat insomnia. The problem here was that far from making my sleepy, this piece by Caitlin Wood energized me. None of what she says in the article is especially new to me, but her tone is fantastic … funny, assertive, and self-depricating all at the same time.

Then I had to follow the link to Where’s Lulu?, and it was all over. The only reason I slept at all was that my phone ran out of juice.

Monday, May 19, 2014

Doctors ... Just Relax!

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Leana Wen, National Public Radio - May 17, 2014
"More than half of medical school deans report that their students aren't competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don't require clinicians to demonstrate knowledge or skills in treating patients with disabilities.”
So disabled people get measurably worse medical care because caring for us properly is too hard?

This reminds me of a circular argument we sometimes hear in public education. Classroom teachers often say that they shouldn’t be teaching significantly disabled students because they aren’t properly trained, like Special Ed. teachers are. Their belief is self-fulfilling. When a teacher decides that teaching disabled students it is beyond them, then they will, in fact, do a pretty poor job.

I think it’s the same with doctors. An ER doctor doesn’t have to know all about every disability to treat a disabled patient well. What they need, I think, is a little more confidence, an open mind, and really good listening skills.

The doctors cited in the article don’t believe they are “competent” to treat disabled patients. I would agree that many of them are insensitive and fearful of disabled people, but I don’t accept that broadly speaking they are incompetent. We are people, not internal combustion engines or integrated circuit boards. What doctors need is to realize how similar we are to other patients, not how different. They should be more confident, and not shy away from us just because we aren’t the norm.

The problem is that these doctors do end up treating us anyway especially in settings like the ER; someone’s got to. And when they do, as often as not, they are awkward, rushed, and unresponsive. They can do better, but because they don’t think they can, they don’t.

A bit more training in medical schools might help, but I don’t think it would take much. Instead of a whole course, what doctors need to hear is: “Relax! You are a fully qualified physician. Just do you thing, listen to your patient, and quit trying to pass the buck.

Still Seeking Comments ... How Do You Feel About Your Disability Equipment?

A couple of people have responded to my request for comments on how disabled people feel about their adaptive equipment. In a “Work In Progress” post on Friday, I said that I Love My Ventilator, and that when I used to use a scooter, I didn’t just use it, I enjoyed it and felt an affection for it. I’d like to hear from a few more people, because I know that there is a wide range of feeling among people with disabilities for the equipment they use.

Just because I love my disability gear doesn’t mean that’s the “right” way to think about it. There are valid reasons for people to feel indifferent or even hostile towards the equipment they use to adapt to their disabilities and surroundings. Also, I think most of us have both good and bad associations at various times. Not to mention that how well or poorly equipment is designed, and how it looks, has to make a difference.

So seriously … what do you feel, if anything, about your wheelchair, walker, cane, hearing aid, scooter, ventilator, or whatever “specialized” items you use specifically related to your disability? The idea is that I’ll include comments in my finished post on the topic, to go along with my own thoughts.

You can comment below, or if you prefer, send me an email.

Saturday, May 17, 2014

Late Night / Early Morning Music

"American Girl" Doll Petition Still Needs Signatures

I first saw Melissa Shang's Change.org petition to add a disabled “American Girl” doll back in late December. I checked in again in January, at which point the petition needed 26,000 more signatures to reach its goal. As of today, it still needs about 7,300 more.

As far as I can tell, Mattel, the “American Girl” brand’s manufacturer hasn’t committed to adding a disabled doll to its collection, although a spokesperson praised Melissa’s efforts.

I’m sure they get tons of very specific requests, since the whole point of the “American Girl” collection is to represent American girls of all kinds, from all walks of life. For that same reason, though, I don’t understand why they haven’t been more decisive about it. Maybe when Melissa’s petition reaches its 150,000 signature goal they’ll use the occasion to make an announcement.

A Fine Turn Of The Phrase

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I don’t know why, but I just really love this description:
"Do you know the feeling of when it is like every step is wading through treacle? You don't need a physical disability to know how that feels. Combine that with a left leg acting like a bung shopping trolley wheel and a left arm that is twisted like a pretzel and it really is a pretty picture.”
She Types Things - April 30, 2014

Photo Of The Day

Self-taken photo of person's feet in dusty black boots, with end of multicolored cane between them

From the Tattered Obsidian Tumblr blog, via Wheelie Wifee.

I highly recommend reading what the Tattered Obsidian blogger has to say about this photo. It relates to the post I'm working on about "loving" or appreciating our disability-related devices, rather than hating or merely tolerating them.

Friday, May 16, 2014

Photo Of The Day

Blonde woman in an electric wheelchair, wearing floral printed dress, looking surprised, next to bronze statue of a man, without head in a museum atrium
From the jillypeppa Tumblr blog. Fashion Blogger / Model Jillian Mercado.

Work In Progress … I Love My Ventilator

Do you love your wheelchair? Or, your scooter, crutches, walker, or cane?

I love my ventilator. “Love”, of course, might not be the right word, but it’s close enough. I feel good about using it. I feel a bit insecure when it’s not accessible to me for awhile. I am grateful for it because I know how it helps me, but it also feels comforting. Even though technically I rent it, it I feel like my ventilator is mine.

When I used an electric scooter in college to get around campus, I loved it, too.

When I was in grade school, and had to wear ankle and foot splints for a few years, I hated them, mostly because they hurt. I don’t think I ever felt stigmatized by any of the disability-related “gear” I have used.

If you use any kind of adaptive equipment, do you love it, feel attached to it, hate it, or tolerate it? Do you feel stigmatized by it, or do you make it a fashion accessory? Or, do have no feeling or opinion at all?

Please share your thoughts in the comments below, and I will include them in a more complete post on how we think about the devices we use.

Thursday, May 15, 2014

Mia Mingus On "Crip Solidarity"

Mia Mingus, Leaving Evidence - May 3, 2010

I just mentioned in my last blog that the Stella Young essay Dear 16-year-old Stella is my favorite piece of writing on disability. I think this post by Mia Mingus is now the runner up for me. For those of us with disabilities, it challenges us to be better “crips”. I think it can also help explain to non-disabled people … and disabled people just starting to explore what disability means ... what, exactly, “crop culture” is supposed be.

Stella Young On "Inspiration Porn"

Megan Griffo, The Mighty - May 14, 2014


I have been reading here and there about Australian Comedian / Broadcaster Stella Young doing a TED Talk in Sydney, and finally here is a chance to share the video of her talk. Any time Stella Young writes something or gives a presentation on disability it’s worth tracking down. As it stands, she is the author of my favorite piece of writing on disability, Dear 16-year-old Stella.

Here, she introduces the TED audience to the concept of “Inspiration Porn”, and gives a pretty convincing argument for why it is a bad thing, not just something that rubs disabled people the wrong way. She also asserts that disability isn’t “a bad thing”, which is an idea I understand and basically agree with, but I think is very hard even for some disability rights folks to swallow. Personally, I would prefer to say that disability isn’t “as bad as you think”, but I get what Stella means here.


Ironically, I found the video via Ramp Your voice, on a website called The Mighty, whose slogan is “Superheroes Among Us”, and appears to traffic in a form of Inspiration Porn. They present the video with seemingly no awareness at all that they practice at least some of what Stella speaks against. I’m glad they liked her talk and happy they offered it up, but it shows just how ingrained the inspiration instinct is, especially for a certain kind of “good guys / let’s all be positive” organizations and websites.

Pass The CRPD ... For Spite

Phil Pangrazio, AZ I See It, azcentral.com - May 14, 2014

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A few weeks ago, I noticed a new round of social media activity in support of the UN Convention on the Rights of Persons with Disabilities (CRPD). The reason for the renewed activity was that the Senate had finally approved a different United Nations Treaty, on fisheries. This prompted CRPD supporters to launch a slightly tongue-in-cheek campaign asking: Why does the Senate feel it important enough to pass a treaty on fishing, but can’t see it’s way clear to pass a treaty on the rights of people with disabilities?

The "fish" formulation took off, and it's great to see mainstream newspapers, like the one linked above, using it in a renewed push to pass the CRPD on the grounds of decency and common sense.

The subtext of this, of course, is also the reason why the CRPD has failed to pass twice. It’s got almost nothing to do with disability rights. The problem is that it is a United Nations treaty, and a handful of highly ideological right-wing and religious organizations argue that the UN itself is illegitimate, powerful, and hostile to freedom and US sovereignty. Any UN treaty that fails in the Senate is a victory for these people, almost regardless of the treaty’s topic.

The fishing treaty probably passed because it’s about as niche and obscure a treaty as can be imagined, so the advocacy knives weren’t as enthusiastically out for any conservative Senators who dared to vote for it.

Take a look at this May 5 piece by two attorneys for the Home School Legal Defense Association, one of the strongest opponents of the CRPD … and and of the UN itself.

William A. Estrada, Esq., Director of Federal Relations and Cordell J. Asbenson, Congressional Action Program Director
Home School Legal Defense Association - May 5, 2014

Read the whole piece ... but here are my "favorite" quotes:
“HSLDA has fought on many occasions to stop ratification of United Nations treaties, most recently with our work to defeat the UN Convention on the Rights of Persons with Disabilities (CRPD). While there are many reasons HSLDA opposes the CRPD, one key reason is that the United Nations is openly hostile to religious freedom, the right to life, homeschool freedom, and parental rights ... ”
"The modern UN has become a powerful global player that is hostile to many freedoms that we as Americans and homeschoolers take for granted. UN treaties have become tools used by unelected, power-hungry international bureaucrats to gain control over nations and free peoples ... ”
"Protect Your Family
If you aren’t yet a member of HSLDA, consider joining today! HSLDA’s work benefits homeschooolers in the United States and around the world. We invite you to participate in our ministry to the homeschool community.”
Oh, right. Don’t forget the membership come-on at the end! Protect your family … pay us dues!

Clearly, this organization is about more than the practice and policies around home schooling. I doubt they care much about the concerns of left-wing, hippie parents who home school their kids. Their constituency appears to be right-wing religious families who feel like the world is against them, and believe that the Federal Government and the UN are agents of godless socialism. I also question whether the organization has any special insight into the unique needs of kids with disabilities … who sometimes have very specific reasons to benefit from home schooling that have nothing to do with religion, traditional values, or the meaning of national sovereignty.

All of which is to simply say that for the most part, opposition to the CRPD is bullshit. Opponents may have a slight area of actual disagreement to the treaty, insofar as its language suggests that kids with disabilities have some rights that could take precedence over what their parents want to do. It is possible to view that catastrophically, as total usurpation of parental authority. You can also view it more sensibly, as recognition that children ... even disabled children ... are human beings, and not their parents' property.

The irony is that we could have a real discussion about whether the UN has enough power and relevance do anything about disability rights around the globe, other than pass what is essentially a set of suggestions. CRPD opponents fear the awesome power of the UN, while the only real argument against the CRPD is that it’s probably too weak.

That said, I really think the Senate should pass the damned thing. For one thing, all UN treaties have ambiguous authority. That’s part of the point of the UN … it relies less on naked power and more on information, persuasion, and role-modeling. Second, it is embarrassing for the United States to be one of the few holdout countries on this, when it basically pioneered the whole concept of “disability rights laws”. Finally, at this point, I want to see the CRPD pass to spite its opponents. They are so dishonest and cynical that I want to beat them just to see them beaten.

That’s not very noble motivation, I suppose, but it’s how I feel.

Addendum:

For more information on the UN Convention on the Rights of Persons with Disabilities, visit disabilitytreaty.org.