I posted my thing about adaptive equipment just a few minutes ago, and then found this on Tumblr:
"do u ever sit in an office chair and end up smacking the sides because you are looking for the pushrims” — bittersnurr
“Yup” — winglessdemon
Thursday, May 22, 2014
Another Bit On Disability Gear ...
I Love My Ventilator ... And Other Thoughts On Disability Gear
Last Friday, I said that I love my ventilator, the machine I use every night that helps me breathe. I have almost an affection for it. It comforts me. I always feel a little insecure if I’m not within an hour’s drive of it … even though I don’t use it during the day. I added that I felt the same about my electric scooter when I used one to get around campus when I was in college.
I wondered what other disabled people feel about their various items of “disability gear”. Here are the responses I got on this blog and over on my Tumbr blog:
"I've had a power wheelchair for years after having used a scooter most of my life. I definitely like the wheelchair better by comparison, but I would shy away from attributing real emotion to assistive technology. It's great thing it's available, but I view it as a tool. Hope others chime in.” — Rob J. Quinn, I’m Not Here To Inspire You
"I am coming to terms with my new limits and getting used to the cane, and very very slowly coming to terms with the idea of using a chair and reclaiming my life. The process has been incredibly hard. Fucking pride man… and like this long standing idea that if you can walk, you shouldn’t use a chair.” — Tattered Obsidian
"I make my wheelchair a fashion statement. It’s my best accessory. It’s my lifeline to independence - without it, I’ll be so dependent. Plus… I use it to get the hot guys to notice me. ~ V :)” — Vilissa Thompson, Ramp You Voice!
"We don't have a lot of specialized equipment for our 18yo daughter with moderate cerebral palsy any more. There were days when our whole house was overflowing with special cups, scissors, pencils, leg braces, hand splints, bulky seating equipment, huge car seats, bath chairs, nesting benches, switch toys, and over-sized exercise balls. There are still things that aren't typical for an 18yo - sports cups instead of glasses, a bib loaded with paper towels to soak up spills, a retractable badge hanging from her belt with a washcloth to wipe her mouth, a basic bath chair available at any drugstore. But, I have to say, it's nice to have less special stuff and less clutter. Don't get me wrong, I actually do love what we have, but only because they serve a necessary purpose.” — Kerith Stull, Brielle and Me
"My son when he was younger use to use a walker but when he started Kindergarten he began to use arm-band crutches. He has Arthrogryposis but it only effects his lower part of his body. He has very little muscle in his lower limbs. We keep an older set at the top of our stairs so he doesn't have to crawl around. We've had to purchase 4 so far. We can adjust them as he grows but it only goes to a certain height. The problem we have come across is the rubber bottom part of the crutches wear out quickly and aren't easy to find. We try to buy extra so we have them on hand. I tried to find a place locally that we could donate some of his leg and body braces from when he was younger but I guess it's a liability to use used equipment. We do have a wheelchair as well for when h e's had surgeries or when he breaks a bone, which he does often because he has brittle bones. But we pay a monthly rental fee for it. Our goal has always been to make easy and as normal for him around the house. He's now 9 years old and is pretty strong!” — Mari Blair
People appreciate the practical value of adaptive equipment. Wheelchairs, crutches, and all kinds of other devices make life easier for disabled people. If you have an impairment, like not being able to walk, then equipment like a wheelchair is liberating.
On the other hand, we live in a society where assistive devices still tend to symbolize disability. You still hear people talk about someone being “wheelchair bound”, and “throwing away the crutches”, as if the equipment is the disability. While it is natural for people adjusting to new disabilities to feel negatively at first about adaptive equipment, I think that people who continue feeling awful and stigmatized by their adaptive devices tend also to have negative feelings about their own disabilities, and maybe a bit of self-loathing, too.
One factor I think gets overlooked, however, is the quality and fit of adaptive equipment. A heavy, one-size-fits all rental wheelchair is not as liberating as a custom fit lightweight. A hearing aid that doesn’t work properly can be literally a pain. Having a bunch of gadgets you didn’t choose, that someone else told you would be useful but aren’t, can be demoralizing.
In her later years, my grandmother was, as she would say, “lame”. She and my grandfather lived in a nice condo in Florida, but she rarely went out, and my parents were pretty sure it was because she didn’t like being seen in a wheelchair. Mom and Dad interpreted that as Grandma being vain and old-fashioned, and it saddened them to see her cooped up for what they felt was no good reason. "Fucking pride man."
They may have been right. Grandma was born before the 20th century started, and she was, in many ways, “proud”. Thinking back on it, though, I wonder whether part of the problem was that in the late ‘70s she simply didn’t have access to adaptive equipment that wasn’t cumbersome and unnecessarily ugly. I’d love to travel back in time and give her a sharp-looking, powered Hoveround or Jazzy. Grandma had a walker, too, that was functional but drab. I wonder if she would have enjoyed one in cool colors … maybe some pinks. She liked pink.
I think it’s important for both disabled and non-disabled people to remember from time to time that disability gear is meant to be liberating, not a millstone. A walker is not a disability; it makes a certain kind of disability easier to live with. And it’s not crazy or some kind of conscious stance that many of us feel close to our devices. We don’t like strangers randomly touching and handling our wheelchairs, and when our canes and walkers are taken from us we feel incomplete and vulnerable. My ventilator was portrayed to me as an unpleasant last resort before I got it, but I feel like I am really at home when it’s there … even if I’m in a motel room in a strange city.
I’ve never decorated any of my adaptive items, but you know, my tracheostomy tube uses disposable fabric ties. Maybe one of these days I should see how it feels to wear one in a chosen color other than hospital white.
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!
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.
Sunday, May 18, 2014
Weekly Wrap-Up
Sunday, May 11, 2014
Monday, May 12, 2014
Tuesday, May 13, 2014
Wednesday, May 14, 2014
Thursday, May 15, 2014
Friday, May 16, 2014
Saturday, May 17, 2014
Saturday, May 17, 2014
"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
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
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
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.
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