Recommended: "Our Birth Story"

Sawbones: A Marital Tour of Misguided Medicine
One of the gulfs between disabled people born with their disabilities, and parents of kids with disabilities, is how we think about the birth itself and that first discovery of disability. While all of us with disabilities can understand, intellectually, that it had to be one of life’s worst moments for our parents, we don’t want to dwell on that, because somehow that implies that we are one of the worst things to happen to our parents. We know that's not true either, but that can be hard to remember, given how many parents talk about it.

Meanwhile, special needs parents crave some recognition and understanding about what they went through … a connection and empathy that might be impossible for other parents to give. Even we, their children, can’t fully connect, because we have our own complicated issues with “that day” in the hospital.

All of which is just an overlong introduction to an extraordinary podcast episode I just listened to. It is called “Our Birth Story”, and it is the latest installment of Sawbones: A Marital Tour Of Misguided Medicine.

Sawbones is hosted by Justin and Sydnee McElroy, husband and wife. Justin is a podcaster and comedian, and Sydnee is a physician. Together, they take a humorous look at some of the bizarre twists and turns of medicine throughout history. Lately, several of their shows have been related to reproduction and birth, because Sydnee was pregnant with their first child. This episode is a departure because it is about their actual birth experience, and it is only funny in the sense that these two can’t help being funny … otherwise it is an amazingly vivid description of what happens to parents when things don't go according to plan in childbirth.

Their little girl Charlie is fine, so their experience isn’t a direct parallel to disability. However, I really felt that regardless of the ultimate outcome, Justin and Sydnee had a lot to say that I’m sure parents of kids with disabilities can relate to, especially the “white knuckle terror” of knowing something is wrong and being powerless to do anything about it … and not even being told what’s happening. At the same time, Justin and Sydnee are smart and level-headed people, so they are able to view their experiences with at least some objectivity, which makes the podcast bearable and informative.

Listening in my car, I though a lot about my parents and their "that day" ... including my father, who was a Pediatrician.

I would be especially interested in what any special needs parents think of the podcast.

Video Of The Day: Mannequins 2, JCP Edition

Visit for breaking news, world news, and news about the economy
Jane Weaver, Today, NBC - July 15, 2014

I am glad to see this, but I am surprised they didn’t mention the similar project done in Zurich, Switzerland last Fall. The video for that made me cry for real, not out of pity, but because of a strong feeling of identification with the participants. One thing I like about this project is that they don't focus on disability per se, but on differences ... including weight and height.

A Little Moxie Summer Blog Hop - "Talking Raw, Talking Real: Challenges Related to Disability"

Summer blog hop series: challenge!
Most of the time, the challenges related to disability aren’t about disability alone. In my experience, and observing the experience of others, 75% of the time, it's actually about disability and something else:

Social stigma … Everything from mild awkwardness and ignorant comments, to open ridicule and bullying. They invade our space when we least expect it, an it hurts in a very personal way. In some ways, it’s the least significant problem we face, but in other ways, it’s the most painful.

Discrimination … Prejudice put into action, where it concretely affects our mobility, inclusion, and opportunities. People can think what they like about disabled people, but prejudice causes real, lasting harm when we lose a job opportunity because of it.

Poverty … Money can’t buy happiness, but it can buy off a lot of the hardships of many kinds of disabilities. Money can buy ramps, lift vans, decent wheelchairs, tutors and therapists, and pay other people to help us do the things we can’t do for ourselves. The flip side is that when we don’t have money, everything about our disabilities becomes exponentially harder.

Segregation … Being cordoned off into “special” programs of any kind may seem to have superficial advantages, but the harm is deeper and longer term. Separate is not only unequal, it is artificial, inauthentic, and it provides cover for neglect and abuse. Plus, segregated programs are almost always maintained for the convenience and comfort of people other than the actual disabled people they’re supposed to serve.

Lack of agency … In little ways and big, we are often treated as something less than complete human beings. Most people don’t realize they are doing it, and very few believe we are literally inferior. Yet, we are treated like a bundle of symptoms and behaviors. Adults are treated like children or tweens. People speak to the person with us instead of directly to us. Even our families sometimes seem to forget that we are people ... not symbols or tests of their moral character.  In many ways, the biggest challenge of disability is simply to assert and maintain our basic personhood.

Disabilities impose themselves every day, and occasionally they can be very sharp and punishing. But disabilities are different and distinct from the hardships associated with them that are imposed from the outside. The good news is that most of them are easier to fix, both personally and systemically, than most disabilities. It doesn’t always seem that way, and lots of disabled people would disagree, I think, but I believe it is true.

Disabilities are largely beyond our control. Human behavior is not. The real challenges of disability are the “… and other things” that go along with it.

A Disability "Red Flag"

illustration of a red flag flying
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.

"Let Us Now Praise Famous Men"

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.

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:

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

Summer blog hop series: challenge!
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.

Best Article On Disability By A Parent

Michael Bérubé, Al Jazeera America - May 25, 2014

(Via the Autistic Self Advocacy Network Tumblr blog).

This is the best first-person article on disability by a parent of a disabled child I have ever read. It is very personal and anecdotal, but also connects one young man’s experiences with larger policy issues. Mr. Bérubé keeps the article focused on his son, Jamie, while also expressing how he, Jamie's father feels.

The picture he paints isn’t entirely gloomy. Age 21 isn’t quite the “cliff” it is sometimes said to be for disabled kids. There are systems in place with decent and improving philosophies behind them. Yet, so many disabilities … especially it seems intellectual disabilities … seem still to still baffle us, probably unnecessarily.

This is personal journalism at its best.

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.

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.