Okay, lets move on from that last blog; I’m not saying it wasn’t a slice of real life (my life), it is just that once you decide that life sucks but maybe you DON’T want to cause yourself excess pain, it is usually too late. It is like when you get dumped and you destroy everything that reminds you of your ex and then the next week you say; “Geee, I really could of used that blender now.....” So yeah, I stood up until I had to lie down with oxygen, I got a fever, the next morning I was delirious but, you know, still had to take Transit to the hospitals for more tests (kinda like the two I have for tomorrow). Feeling crap while doing that wasn’t as empowering as I imagined, maybe because I wasn’t all psycho anymore and muttering things “I hate kittens and butterflies.” So, still funked, but moving on.
I will do some quick reviews here of those who might be interested in disability/wheelchair/identity young adult literature (hey, I didn’t think three months ago I would interested in it either....so keep this bookmarked!). I like Young Adult literature because it basically asks “Who am I?” in every book which is something you ask yourself a lot when you have a disability, along with, “Why are so many people ignorant as they insult/act stupid towards me and then go away feeling good about themselves for talking to ‘that poor girl’?” I just had a Victoria transit driver have his wheelchair safety hook get stuck; he gabs my multi-thousand dollar rigid wheelchair wheels and yanks them back through the metal restrains to pull the hook clear (instead of say....clearing the caught cloth in the safety hook mechanism). Guy has totally wacked my right wheel, looks at me with a grunt of “there ya go honey,” and goes back to his seat, job done, to leave me to wheel off and try and find time to have my wheelchair realigned. THANKS BUDDY!
Okay, back to the YA fiction (most adult books are retrospective: I did this and that after being disabled stories, not, “Oh shit, my life is screwed, now what?”):
My Life as a Body by Norma Klein: Odd because I have bits of every character in the book: tall 6 foot high school girl, Augie, who is self conscious, her best friend who is a lesbian and she is forced to deal with guy fresh to wheelchair. In a very New York/Virginia Woolf writing style Augie falls for Sam and has issues about love and independence and awaking the body sexually for a young intellectual. The author isn’t disabled and as the story progresses this becomes more obvious both characters spend more time dealing with Sam returning to the rich, independent sexually active person than Sam actually in the chair, and the understandings/frustrations being dependant gives him. Well written and engaging but not challenging.
Accidents of Nature by Harriet McBryde Johnson: If I had to recommend one book for everyone to read in order to see the assumptions most disabled people live under, this is it. It is narrated by Jean who has cerebral palsy (CP) and her CP cabin mate Sara at “crip camp” (Camp Courage). Sara is an teen activist who is tired of the crap that AB (able bodies) dump on the disabled; and soon she has the cabin set up very unpolitically correct, but where people are actually happy (for example the OCD/asperger girl gets to do all the cleaning; though the AB’s think she should “equally participate”; but in truth she LIKES cleaning while much of the other stuff she hates). Those who have hidden disorders are the “walkie-talkies” as they can still walk and talk....most of the time. Jean becomes aware how much of her energy and life consists of acting, talking and aligning herself with this idea of “normal” which has no application for her, nor is it a true reflection of who she is (for example when she gets excited, Jean can’t control her limbs and she makes noises; the AB counselors try to get her to control this, Sara tries to get her to be okay with it). Written by woman who attended schools and camps for children with disabilities, she is a lawyer and also holds the record for fifteen years of uninterrupted protesting of the Jerry Lewis Telethon (she has a memoir: To Late to Die Young, referring to how Jerry Lewis always gave her the impression she would die as a sweet child). This teen book took 12 years to get published and is a scathing but very important view at the difference between the forces of acceptance and assimilation in society.
Stoner and Spaz by Ron Koertge: A light read fantastically written about Ben, a kid with CP who has no life except what he watches on the movies and Colleen, the stoner who does drugs, has too much sex which she can’t remember the next day and how they come together (she promises to flash her tits if he does her English paper). She awakens something in Ben, a desire to do movies himself; to reach out and stop waiting for life to reach out to him. Top pick and winner of some awards, I pretty much own this book (I think the library has given up on getting it back). Written by an insider of sorts as his wife works with physically disabled – well portrayed.
Because She’s my Friend by Harriet Sirof: Novel about two teen girls from different backgrounds; Teri a candy stripper in a hospital from a poor extended Italian family and Valerie, with a paralyzed leg who comes from a rich but aloof and divorced family. This book is about the way sudden disabilities throw different people into our lives and friends disappear and suddenly people who weren’t friends before can become very important. Also examines the mental issues around dealing (or sometimes not) with a sudden physical disability. Written by a woman who went through what Valerie did, well told and covering the social aspect of sudden disability, something not often covered.
Boy Proof by Cecil Castellucci: Okay, not actually about a girl with a disability, but rather a girl with a shaved head, several piercing and coloured eye brows who talks to no one and wears clothes including a cloak based on a post-apocalyptic science fiction film. Her name is Victoria but she answers to Egg. She is smart but so alone and odd she is boy proof. When Max arrives in her class, someone as smart as her, and someone who “gets” her, she starts to wonder if maybe if might be worth to try joining the human race. But humans are fraught with emotional risks. While depicting essentially the angst of a rich girl with more opportunities than anyone I have ever known (she has hobby of photography but never pays for her film or developing; her part time job is as a movie extra) – Egg (or Victoria) is still an compelling narrative of the life question: “So what do I do now?” Which in many ways is a sudden-disability question too.
Okay, that’s it. I have to go back into the medical system. As I said yesterday when the tech called my name from the hall while holding holding a big bottle; “This isn’t good sign when I don’t know your name yet but you already have the lube out.” Fifteen minutes later he had his sonogram equipment INSIDE my panties. That sounds erotic...but it isn’t. No, don’t google “Sonogram Panties”; instead go pull up your on-line public library and start reserving some books – or if not that, start recommending some more for me.
6 hours ago