While my relatives were here last week, we took the kids to the local children’s museum. I was sitting with the three year-old, who I’ll call Jon*, in a little alcove while he played with a super-cool medieval castle, knights and even a few dragons. After a while, a little boy, perhaps seven or eight, came in pushing himself in a wheelchair. I became a little bit flustered. What would I say to Jon if he asked about the boy with the wheelchair? I wasn’t sure how to explain to a preschooler that some people need to use wheelchairs for mobility. I didn’t want to just say, “His legs don’t work so he needs a wheelchair” because what if the boy had a heart problem or what if he could walk with crutches or a walker but couldn’t walk long distances? That would apply in either case or a hundred others.

I was really frustrated with myself because I didn’t know what to tell Jon. I didn’t want to offend the other little boy by saying the wrong thing because I know that non-disabled people say stupid things about disabilities every single minute of every single day. While I was trying to figure it all out, the boy got up out of his chair to get a better look at his train exhibit and then sat back down. Now I definitely didn’t know what to tell Jon about the boy’s disability. What kind of condition did he have that allowed him partial mobility? Luckily, the boy soon wheeled himself around and left the room. Jon had been so engrossed with the knights and dragons that he never even noticed the other boy.

Later on, I was exploring the museum with Jon’s five year-old brother, Don*, when we visited the “medical center” exhibit. This included a dentist’s office, doctor’s office and exam area, surgery area including a cloth “cadaver” that the kids could open up and look at the body parts, and a hollowed out ambulance with flashing lights that actually worked. (Don loved this.) The medical center was pretty cool and I thought it was one of the best parts of the museum.

However, I have one major complaint.  The exhibit also included two wheelchairs that the kids could sit in and push themselves around in. Yeah. It was about then I noticed the boy from the other room walking around without any difficulty. He had just been “playing” at being disabled. Other children treated the wheelchairs like toys, too. The museum had a couple of bikes sitting around for the kids to ride and they played with the wheelchairs in the same manner as the bikes, as if they were a moving toy that they could tire of and cast aside. And that’s the problem.

Wheelchairs aren’t toys. For people living with paralysis and other mobility impairments, wheelchairs are a vital lifeline to independence. But society doesn’t see wheelchairs that way. They see them as a sign of dependence, something the “wheelchair-bound” or those “confined to a wheelchair” have to use. In fact, the children’s museum reinforces this prejudice by teaching kids to associate wheelchairs with hospitals and sickness.

There was no education about the wheelchairs. The kids weren’t taught about the wheels, locks, handles or footplates. They didn’t learn about who uses a wheelchair and when and why. Forget about people with disabilities. They didn’t even learn about why they might need to use a wheelchair at the doctor’s office or hospital. All they learned was that it was a chair propelled by wheels and that when they were sick of riding in it, they could hop out and move on to something else.

It all just gave me an icky feeling. It felt disrespectful to all the kids who can’t jump out of the chair when they decide they want a different “toy” to play with. Pretending a wheelchair is a toy felt disrespectful to all the kids for whom a wheelchair means the independence to move from room to room at home and school. They can hang out with their friends on the sidewalk and the playground.

When you have your own wheelchair, you control where it goes. You are in charge of your own movement, even if you can’t control your body. In other words, Wheelchairs are serious business. They aren’t symbols of dependence but independence. They aren’t toys.

While I had a great time at the children’s museum, the wheelchairs in the medical office exhibit were a huge missed opportunity for kids to learn about disability.

Here are a couple photos of the medical center exhibit, which I “borrowed” from the museum website:

Children dressed as patients, sitting in wheelchairs & using crutches in the medical center exhibit at the children's museum in Eagle River, Wisconsin One girl sitting in wheelchair and one girl using crutches in medical center exhibit at children's museum in Eagle River, Wisconsin

* Since we’re fast approaching the premiere of Mad Men, I went with “Jon” for Jon Hamm and “Don” for Don Draper. :)

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Since today is Juneteenth, which commemorates the announcement of the abolition of slavery in Texas in 1965, and I am reading The New Disability History (edited by Paul K. Longmore and Lauri Umansky), I thought I would share some related disability history.

Most people are aware that white people had paternalistic reasons for justifying slavery. Our forefathers tried to excuse their need for cheap labor by saying the institution of slavery was a benevolent one, that they treated their slaves well, and the poor things just wouldn’t be able to get along without their white masters’ food, water, clothing and shelter. Blah, blah, blah. We know slavery was justified in horrible and despicable ways. Most of us probably aren’t aware of how despicable.

In his essay “Disability and the Justification of Inequality in American History”, historian Douglas C. Bayton reminds us that one of the most common disability arguments for slavery was that African-Americans were said to be less intelligent than white Americans (i.e., intellectual disabilities). He goes on to explain that African-Americans were often “diagnosed” with two types of mental illness: Drapetomania and Dysaesthesia Aethiopia. The first was “a condition that caused slaves to run away” while the second was a disorder that “resulted in a desire to avoid work and generally to cause mischief.” Overseers just called Dysaesthesia Aethiopia “rascality”. (Bayton 38)

Sigh. But wait, there’s more.

Medical doctors also claimed that education was disabling to African-Americans: knowledge could actually disfisgure, ‘dwarf’ or ‘shorten the lifespan’ of an ‘educated Negro’. (My single quotes are quoting Bayton, who was quoting a Dr. John Evrie of New York in the 1860s.)  Doctors claimed free ‘Negroes’ were being made ill and disabled by the harsh Northern climate and were more physically suited to the semi-tropical climate of the South, where they would of course work as slaves.

Of course.

There is much, much more to say about African-Americans and disability and I know I am not the best person to say it.  Still, it”s Juneteeth, a day when we celebrate emancipation and justice. So….

Happy Juneteenth!!

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I just finished reading The Feminine Mystique. I know, I know. I’m a bad feminist: I should have read it a long time ago. Whatevever. While I hated much of the book, particularly Friedan’s endorsement of Freudian theory, homophobia, slut-shaming and victim-blaming for domestic violence and sexual assault, I recognize it was groundbreaking for its time and helped millions of (primarily) white, middle-class women realize they were not alone in their suburban isolation.

The book felt horribly dated to me, though, which led me to wonder: what has the Feminine Mystique morphed into today? As an armchair scholar of women’s studies, I would have to guess that it’s the mandate that women have to “do it all” and do it perfectly. We must finish high school and attain some higher education. We must work, often starting in high school (or earlier). We work to pay for college, to support our families and to save for retirement. We must claw our way up the corporate ladder, wearing OPI nail polish and Louboutin heels. We must marry by thirty and have children by thirty-five, or there is something wrong with us. Once our children are born, we must lose the baby weight as soon as possible and maintain our figures, just like Heidi Klum does. We must put our children’s needs ahead of our own: ahead of our health, our relationships, and our career, work and education. And of course, we must always strive to retain that youthful glow by fighting off the wrinkles and dyeing away those grey hairs.

Is this the new Feminine Mystique? That we must be Superwomen? If so, where do we go from here?

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Hey, it’s Friday again! I’ve had a horrible week, battling a migraine that sent shooting pains from my eye to my right arm and fingers. While I’ve been spending quality time with my painkillers, good stuff has been going on in the disability blogosphere. Check. It. Out.

Karen Putz usually writes at A Deaf Mom Shares Her World but has an awesome post up at the Chicago Moms Blog: Embracing my Deaf Self:

My summers as a teen were spent hiding the fact that I couldn’t hear. As soon as the school year ended in the late spring, my lone hearing aid was placed on a ledge and never touched until the first day of school in the fall. I spent my summers with a great group of friends, many who knew just what to do to make communication happen between us. I depended a lot on my lipreading skills to piece together conversations. It was the casual group gatherings that had me bluffing my way through conversations because it was next to impossible to lipread the many lips that were speaking at the same time.

Wheelie Catholic: A Place Where the Sidewalk Ends:

because suddenly the sidewalk ended and a very green yard lay before me. I stopped my power chair (aka The Beast) and sat there. I couldn’t cross the street because there were no curb cuts in sight and the curbs exceeded the height I can safely jump.

Screw Bronze! Secret Shames and Wish/Bucket Lists Part II with pics of fire

to do: GET OUTSIDE! Yes. Go see the outside world, now that there is sun and such. And specifically, I would like to go wheel in the woods. The pain and weakness I have right now make the difficult but I am trying to sweat to improve my circulation and healing and when that pain finally goes away, I hope I will be in better condition to go outside. I really would like to go to the woods, and into the trees, smell the loam, the fallen needles, and the vines of blackberries, fallen old blackberries giving it a scent of sweet blackberry and dusky dark earth, a hint of mushroom and warm bark.

TGIF, y’all!

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June 9, 2010

Today is a hard day. Five years ago, I was released from the hospital after 99 days. I was excited and scared bleepless**. Exhausted from everything I’d been through, I was ready to go home and just be: rest and sleep when I needed to, wake up and go to bed when I wanted to, transfer from my bed to my wheelchair when I was ready. In short, I couldn’t wait to leave the hospital and finally be in control of my own body, decisions and life again. Hospitals are wonderful places but they’re institutions. I was tired of being institutionalized and ready to go home.

And yet…. I was still scared bleepless. I was leaving behind a lot of people who meant a great deal to me and had helped me so much: my nurses, my kick-arse physical therapist and other therapy staff, a few special doctors and a whole floor of patients with spinal cord injuries who, even though I wasn’t close to them, at least had some idea of what I was going through.

Once I got home, I felt so isolated. As I gained more of my mobility back, my family and friends were so excited and they expected me to be more “normal” again. But I didn’t feel “normal” and I still don’t. I struggled with depression and PTSD for several years and that may be part of why I’ve felt so isolated. The other part is that I’ve had “invisible disabilities”: pain, fatigue, visual impairments, problems with very low blood pressure and a few other things that, like many other people with disabilities, I’m simply ashamed to talk about in public.

All of these things are disabling. They are isolating. It’s been a long haul since that scary day five years ago when I left the security of the hospital to rejoin the real world. I’d like to think I’m handling all of this with grace and dignity but I suspect I fail often. All I can do is keep trying.

One day at a time and all that, right?

** “Bleep” is my Internet swear word, taken from the fact that swear words are “bleeped out” on television. “Bleep” is all-purpose, as in “that’s bleeped-up” or “bleep you!” or “bleepity bleepity bleep bleep BLEEP!”

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Yay! It’s Friday again. Here are a few blog posts from this week I’d like to recommend.

The Deal with Disability: Making lemonade from lemons

In my junior year of high-school my aide wanted to take her lunch break the period before lunch. That was fine but posed the problem of me not having an aide for one period. And since my schedule rotated that meant not having her for 3 different classes over the course of a week. So my parents and I brainstormed and though of asking my teachers if it would be cool to ask for volunteers in the class to help me out. They would take notes for me, read my board if I wanted to participate, and they would not be required to do the work for that day in class (since I was spelling out the answers and they would have had no time to turn in a copy for themselves). Everybody loved it and some people fought over who would get to do it. Keep reading….

Wheelchair Dancer: What Kind of Life?

Disability isn’t a soft position for me. Since becoming disabled, I’ve remade my life, yes, but I have remade it in such a way that it is perhaps fuller and certainly physically harder and less comfortable (at work at least) than it ever has been. My life is more intense. Every small success means more because I have had to work harder for it than I ever had to in my previous life. Keep reading…

Perspectives from a Blind Point of View: Prayer Will Not Cure My Blindness

In the last two months I have been approached not once, but twice by young men who want to cure my blindness by praying for me. I must first tell you that as a non-believer, this made me very uncomfortable. To be nice I allowed the prayers to take place. Both times the young man was surprised that my blindness had not been miraculously cured. Keep reading…

That’s it for this week. Have a great weekend, everybody!

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I’ve always thought that “glamour” is an innate personality trait that you either have or you don’t. For example, Michelle Obama is glamorous. She’s got that elusive “it” factor whether she is digging around in the White House vegetable garden or looking fab for a State Dinner. In contrast, Britney Spears could wear a Chanel gown designed by Karl Lagerfeld himself and never be glamorous. In other words, glamour is a state of being and you can be glamorous with $10 or $10,000 in your bank account.

What is “glamour”? Who is glamorous? What makes someone glamorous?In her new book Glamour: Women, History, Feminism, author Carol Dyhouse appears to disagree with my definition of glamour. Painstakingly charting the evolution of from the turn of the twentieth century to today, Dyhouse seems to make the argument that anyone can be glamorous, or at least anyone with money. According to Dyhouse, glamour is a consumable commodity, comprised of furs, jewelry, makeup, perfume, clothing and the like. Using meticulously researched facts and vintage advertisements, the University of Sussex (UK) professor documents how, beginning in the 1920s and 1930s, Hollywood and companies like Max Factor, DeBeers Diamonds and the Hudson’s Bay Company (furs) conspired to sell women an artificial idea of glamour.

I struggled with the difference between Dyhouse’s and my concept of glamour continually as I read this fascinating encyclopedia of all the things that make us glamorous: jewelry, furs, makeup, clothing, perfume, and of course, the Hollywood magic machine. Why do we see glamour so differently? Is it a cultural thing: U.S. vs. U.K.? I’m not sure.

Still, throughout the book, I was reminded of my maternal grandmother, Helen Igl, who died when I was thirteen years old. As a young woman, she was a career gal in Chicago, then moved to northern Wisconsin to become a potato farmer’s wife and raise eight kids in a small town. By the time I knew her, she was an old lady who spent most of her days wearing patterned housedresses, aprons and white orthopedic shoes. But she went and got her hair “done” every week and I always remember her wearing perfume. When she went to church on Saturday, the pearls, fur and pretty dresses all came out. Even though Grandma Igl spent three-fourths of her life on a potato farm, I always thought she was glamorous, although I’m not sure it was because she never lost that Chicago “city gal” inside of her or if it was of her elegant furs and pearls.

I guess, in the end, I choose to believe that I and Dyhouse are right, that glamour is both an internal and external state. Like Michelle Obama, my Grandma Igl had grace digging around in her vegetable garden but she became far more glamorous in a dress and pearls.

What do you think? What is glamour and how do we become glamorous? Glamour: Women, History, Feminism by Carol Dyhouse is a fascinating study of glamour throughout the twentieth century. I really encourage you to read it (find a copy at your local independent bookstore or Powells.com) and let me know your thoughts.

Disclaimer: The only payment I received was the copy of the book.

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