If there's one book that I both loved and hated as a kid, it was The Secret Garden, which I read while recovering from being body casted and just before being diagnosed with moderate to severe scoliosis. According to the book, if only we were more cheery and determined, we, like that insufferable prat Colin (joking tone), could walk again. Colin has been determined by grown-ups to be doomed to being a "hunchback" just like dear old dad, a fate so unthinkable that Colin secludes himself from society long before the dreaded manifestation of this calamity, just in case. So certain are the adults that Colin will be "crippled" and "crippled" so much more than dad that no one bothers to teach him to walk, even though his father can. The message so far as I can tell--and I liked Burnett's other books--is that kids with disabilities are insufferable and have just been pandered to, while if they really tried more they can walk. I found the themes of this book truly embarrassing as I learned to walk again, and "knew" that people would see me as not fully human until that time. In the book, the failure to walk is a failure of character, and this is the prejudice, both internalized and often directly spoken to me, that I continue to deal with. Burnett makes sure we know the disabled body is unloveable. Wonderful when I had extreme kyphosis from loss of muscle control for months after being in the body cast--my mother called me hunched and a physical therapist chided me for being "ashamed" of being tall and of my body and for not sitting up straight, while I had a kid version of "WTF?" and thought, "I am sitting up straight!" (uh, no).
I became quietly hysterical when I was diagnosed with scoliosis not much later and was sent to the local children's hospital on a regular basis. Equally familiar with the story of Courtney and Janie, bodycasted for scoliosis in Just Like Always and Deenie in Deenie, I had visions of more procedures and bodycasting and people who thought my spine was crooked from uh, self entertaining. Fortunately for me, the discussions of surgery and bracing never manifested, and I was only given brutal exercises, forced to lie on the floor for a half hour after I got home, subjected to more than my share of radiation, not allowed to go to sleepovers or use a sleeping bag (even though lying on the floor was good for me), and embarrassed by having to keep an extra set of books at school and not carrying around my own.
Weirdly enough, the pronounced S-shaped curve that made me queasy when I looked at the film became a mild low back C-shape by my late twenties, I presume with the help of chiropractic, and sadistic Dr. Needles, the first physician I tried to see on my own for back problems, saw me as an exaggerator rather than someone who had severe scoliosis which had improved (I thought my back pain was due to scoliosis and a couple of bad car accidents). Ironically, I not long ago overheard one dad laugh at Dr. Wunderkind for suggesting chiropractic to improve his son's scoliosis; the walls are really thin and dad and Wunderkind loud about this. Yes, laugh, laugh at the world-class spine surgeon, because he could only be joking.
So society has evolved a little since The Secret Garden and Deenie, in which people are sure to laugh at you for needing a brace. Oh wait, they do still laugh at you. Anyway, at least we now have occasional tokenism in the place of real equality. The readers who know me personally will appreciate my comparison between a particular new painting at work and the brightly colored cultish paintings at the Denver International Airport. In the painting at work, there is a token woman in a nonworking wheelchair. Since the wheelchair has no front casters and no footrest, I guess it's an early Fred Flinstone wheelchair. Why not walk?
My pet peeve is tokenism to cover up discrimination, and people who think they get it and really don't.
I can't keep a garden, though I used to grow daffodils and other flowers, just like Mary and the prat Colin. I do still cultivate some secrets of my own. Usually I only make confessions under duress, on Versed. But here, Dear Readers, I will make some confessions to you. Grab an evening snack and pull your computer closer:
I'd like to bring House of God to doctors' offices and read it while waiting. If you haven't read it, it's a satire of physician training, over the top, but with some important elements of truth to it. Bringing it along would horrify all doctors except the one who recommended it as more reliable insight than How Doctors Think.
My sister tore all the leaves off the new tree and put them on top of the dog. She was also the one who broke the window. Neither of us colored on the closet door. I'm not talking.
Sometimes I wave at unrepentent starers, pretending to know them. Pretending to greet them in front of their friends, "Hi, how are you?" They look confused, then get a look of panic. I haven't pulled the "don't you recognize me?" card. Yet.
I've also been known to say, "Don't worry, it's not contagious." This, I've learned, upsets people because they don't like being called out. That's okay, people frequently accuse me of being drunk when it's painful and difficult to walk.
I tried to convince my children that buffalo have wings. You know, buffalo wings.
I'm not bitter. I'm just angry. I get over it quickly, until the next time.
My mother's still exaggerating my medical condition to other people, which still humiliates me. I don't think it's intentional. I think she doesn't fully understand or thinks people won't believe her if she doesn't exaggerate it.
When I was 11, a radiology tech in the hospital pulled up my gown and more. When I was 33, an MRI tech at a center I won't go to checked with his hand to see if I was wearing a bra and left his hand on my breast while telling me to think about my boyfriend during the procedure (huh?). While most people are professional and may be trusted, you can't know. I will say don't leave your kids alone with any stranger ever, not for a second.
When I was asked if I had ever been suicidal, I said no. No, that won't affect the way your health care providers treat you at all.
Sometimes at work I like to pull in front of the glass interior doors and see how long it takes someone who's passing by to come open it and how many people sit there in the lounge behind me not helping, as I face the doors. Then I feel guilty about secretly counting how many people walk by or sit there, though it's what I'd have to do anyway. People get angry or exasperated when you ask for help.
I worry about my son more than I let on.
I don't tell people before I meet them that I have a physical disability. They often rearrange their facial expressions in front of me, with a very stiff and plastered smile.
I like you, too. All of you.