Hold on to your armrests/wheelchairs/mouthpiece, this post is inspired by an American TV show about Texas high school football called Friday Night Lights. I have been renting the DVD set and in the first Episode Jason Street, the all star quarterback makes a bad tackle and ended up with a spinal injury (inspired by a real incident in 2003 to David Edwards: the director was at the game where David received the injury). I expected Jason Street to be phased out in usual, “oh poor crip” fashion. And within a few episodes, with his girlfriend cheating on him and fewer and fewer people visiting or knowing how to deal with Jason, it was “adios, quad character.”
Except suddenly, around episode six Jason’s story starts becoming one of the top four stories covered each episode. His roommate Herm, introduces him to wheelchair rugby (against pretty much EVERYONE’s wishes) and suddenly Jason has motivation, is training again. The difficulties and frustrations of moving back home, of being an independent person in a dependant body are fairly realistically depicted, including the awkwardness of his own parents toward him and the crushing financial expenses. In one episode Jason’s girlfriend’s father confronts him and tells him that as sorry as he is for him, this is his daughter he has to think about, and with the whole world in front of her, the father doesn’t want her to spend the rest of her life as a caregiver….just because she’s in love. I’m thinking, “This is an American Football series?”
Herm tells him that people like that will always be there, they are the cancer of PWD and that next time (they are both quads with hand use but not precise finger function), Jason should just give him the finger (Herm holds up his hand and of course all fingers are still curled down – they laugh, I laugh). Jason says at one point, “Yes, I had this accident, but why can’t I turn around and use it to become a better person?”
Yes, why not? I will say that becoming disabled, becoming visibly disabled has been the most educational and in some ways significant experiences of my life. And while I haven’t had good interactions with many AB people (because let’s face it, while women have a glass ceiling, PWD are still trying to break the steel wall of ignorance and discrimination in the minds of the people on the street), I have had primarily positive experiences from people with disabilities and family members. That’s rare in any group. When I sent emails with questions or started blogging about my experiences I didn’t get angry or bitter or exclusionary comments about “We’ll see how you feel in five years Newbie!” Oh, I know there are groups which seem split, the SCI males from…well, everyone, the “bootstrap” people who got some job and feel anyone who isn't as determined as them is just slacker. But really, considering most groups (*cough*feminists*cough*) I have found the community of people with disabilities to be a very encouraging and warm group; not that I wouldn’t leave you all in a heartbeat if the right meds came along (that’s a joke by the way!).
I guess if I had to sum up what different people have taught me is this: “Yeah, life changes, stuff is hard, stuff may always be hard, but we go on, when and as we can.” We take on projects, we go out, we take trips; it is just that might be up to 10 times the effort a AB person makes. We find new routines. We have friends, we even have sex (albeit a little SLOWER than before). You are where you are.
I haven’t been good company lately; I’ve burst into tears pretty much every day for over a week, I have meltdowns. Linda thinks it is because I am in pain all the time and we will talk to my doctor about getting a new dosage and then I will be strong again. That’s just what is. The last two days I worked almost every moment I wasn’t asleep or with EMT’s putting most of my manga up for sale on Ebay (I’m not linking because I know there aren’t a lot of yaoi/yuri fans here). I want to go to Japan in the spring, and I need to raise $1,500. I am hoping this will raise $500. Somewhat ironic to sell my Japanese manga collection to fund my trip to Japan, no? That’s what I want and yes, I know that in terms of accessibility and culture the Japanese HATE visible disabilities like me. To give you one example a wheelchair is considered an “outdoor” thing so when you go inside a house, some restaurants, stores and most schools, other people leave shoes at the door or change to indoor shoes. Wheelchair users are expected to leave the wheelchair behind too (makes marks on the mats) and drag yourself with your arms. Socially families are taught to HIDE their disabled family members. That only makes me want to go more. I can’t wait till the see the gigantic wheelchair lesbian: are there any more mental taboos I can break?
What was that last paragraph about? It is the statement that yes, I love the support but I have to live the life I live. I am not going to act some way because I am “an example for all people in wheelchairs”; I am not here to break down barriers for other people with disabilities. If I want to cry in public, I will. If I want to blow my top and start screeching swear words at someone in a higher and higher pitch; I will. And if I feel that someone at the government department is bullying my partner, I will sit outside with a sign to protest it (I am coming for you John Hammond of Ares!). I will play the crip card as often as my insecurity and frustration demand it. And I will do acts of kindness or generosity because they please me. If I decide I have to sell my panties on ebay to get to Japan, I don’t want to hear any crap from anyone (probably since that is where they are being bought). I’m not saying I get a free pass, I am saying that I will live how I need to live that day, that moment, that week, that month, to mentally survive. And I will make mistakes and do things I regret. I cannot and WILL NOT live to the expectations of either the AB or the disability community stereotypes. For example, I think the “impairment/disability” division within the PWD community is about as useful as a third nostril. Let’s see, my IMPAIRMENT is that my muscles break down and leave me in constant pain, so I guess my DISABILITY is that I live on a planet where the gravity is too heavy. When is society going to do something about lowering the gravity for me? Wheelchairs have been around centuries, and prosthetics for millenium, do you know why? Because people like to not give up, they like to get by, whether their foot is gone from a Napoleon cannon-ball or a 2007 mining accident.
I have been thinking a lot about these people with BIID (Body Integrity Identity Disorder) or the more loathsome named “Transabled.”(no, not linking) These are people who have a strong desire to have a particular disability and feel depressed and incomplete without it. They get much of their validity from Dr. Michael Finch, a person whose JOB it is to find more disorders for the DSM – you know, that book of mental conditions which tripled in size from the third to the fourth edition. So asking Dr. Finch if you have a “legitimate” condition is like asking person paid to find new types of birds if you happen to be a slightly different type of bird. The question no one at BIID or Transabled sites or blogs seems to ask is, does Dr. Finch ever say, “No.” Now, I am not saying that the condition or feelings do not exist, I think they do. I have read of at least person who treated it basically as another form of depression; they went to therapist, a mental health team supervised them and they go out in wheelchair to stop from being depressed. I support that.
However many of the others are so ignorant about disability issues, and even disabilities that their feelings and fantasies are defined by them. I have yet to find a BIID who knows anything about neurological or other conditions involving mobility. It is pretty much SCI, amputation and deaf (So, if you are a BIID person depressed because you don’t have M.E. or Lupus or Spina Bifida, or Parkinsons please let me know). In one blog the person who is a multi-year wheelchair user talks about how, yes, he goes outside walking around to walk the dog because, you know, it just has to be done and the dog would drag him around if he was in the wheelchair. Really, drag you around and be unbelievably inconvenient? You don’t say?
And this is reason I don’t have an assistant animal though I would qualify easily, it is because dogs DO need to be walked and if I can’t be sure I can get out of bed every day of the week then it simply isn't possible. That is my current physical limitations so putting my whim or desire ahead of a dog entrusted to me would be cruelty, no matter how lonely. And being disabled means that when you have a fall and you hurt your left hand and can’t wheel you have to call someone and wait in the snow until they come to get you. You are where you are, right? And if that means you cry, then you cry. If that means you wet the bed because your home care didn’t come or you can’t transfer, then you wet the bed.
See, I’m understanding that now, life is life, and it goes on, warts, pressure sores, rashes, and all. And that is always going to be part of what I have to work with; just like everyone else who is a PWD. It doesn’t define me, but I’m not going to lie, it does limit me. I am going to be a better person because this experience is teaching me – it is a hard teacher, but I learn. I learn that everything from speech to food can be a gift. Taking a dump can be a gift. And that no one is coming down my chimney to give me a new bag of dreams. That’s on me. And like regulating my BP, my heart-rate, my oxygen conversion and so many other life aspects I will take responsibility of that too.
I feel sorry for the people with BIID because if all you get out of being in a wheelchair is being HAPPY you are in a wheelchair then you have missed the point. You missed the woman who cradled my head in freezing weather, you missed why it is important to laugh when you feel the worst and why it is important to try even if you know that failure is almost a certainly. I may not have wanted or selected becoming a PWD but I will not turn from it. I will, of course, continue to complain, swear, act immature, and buy things just because, but in between, I will learn everything I can and be everything I can because like it or not, this is one HELL of an E ticket ride!
10 hours ago