I learn from US TV (gasp!) and even more from my E ticket ride.
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!
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!
Labels: manual wheelchair, PWD, sex
posted by Elizabeth McClung at 11:48 PM
27 Comments:
I'm never really sure how to react to the whole BIID/transabled thing. On the one hand, when people say something like that, I don't feel comfortable saying they're wrong, because I get to deal with people saying I'm wrong about what I say about myself as well. On the other hand, I feel like these people are trying to cling to the coattails of "Gender Identity Disorder" to legitimize their own thing, which may or may not be a legitimate thing.
I mean, I can see the argument that people might be born with neural maps of the body that exclude existing limbs in a manner similar to people being born with neural maps that say the body is the wrong sex. But, on some level, I find it really hard to believe.
I don't know if that makes sense. My feelings are mixed, edging toward "I'd rather these people not use my existence to justify their thing."
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.
This is a great paragraph - I mean, the whole thing, not just the part I quoted. It's frustrating to be expected to stand in for an entire group of people just because you're a) in that group and b) the person in that group that someone happens to be talking to.
Have a terrific time in Japan! And really I think they are as a culture getting more accepting or what ever of PwD. I went for the 2nd time to Japan for 4wks about 2 years ago and had my service dog with me. No one said anything and we went everywhere- to the beach, to the aquarium, to the market, to restaurants, to HyperMart, etc. We even went to Japanese New Year celebrations and no one said 'boo.'
Good luck!! (and stay far far away from 'goya')
((HUG)) Thank you. It was my turn for a 'downer' today and I really needed to read those words ;).
Re Japan: i saw some photos of a disability rights demonstration in Japan by a disabled professional photographer somewhere. I think the demo was a couple of years ago. I'll try to find the link again (sadly, i didn't bookmark it).
Re the disability/impairment distinction: you've pointed out one reason why the most simplistic version of the social model of disability doesn't completely work, ie that not every aspect of life with an impairment can be made equal to the life of a non-impaired person by removing disabling barriers - there are some things, such as pain or shortened lifespan, which can never be compensated for, and some activities which can never be made completely accessible.
However, IMO that doesn't invalidate the social model overall - disabled feminist writers, such as Jenny Morris, Eli Clare, Micheline Mason amongst others, have made an extremely convincing case for the possibility of bringing impairment/embodiment back into the social model, recognising for example that neither my life nor your life can ever be *completely* the same as the life of a "normal" person, but that other kinds of lives are just as valid, just as meaningful, just as "OK" to live, and that in a society which truly accomodated human difference in all its forms, it would not be merely disabled people's lives becoming more like non-disabled people's lives, but everyone's lives being transformed into something better precisely because of the absence of a standard of "normality" to judge it against... does that make any sense?
Anyway, i think the impairment/disability distinction is important and useful, but it's not a 100% absolute thing and in practice (as with just about anything), aspects of both are inevitably and inextricably intertwined with each other...
You are terrific - and illuminating about experiences that most people keep quiet.
This may not be the subject you chose for your blog but you approach it admirably. It's helping me to understand a bit. And I don't suppose I'm the only reader who finds that.
I loved reading that post. Just so you know.
Lisa: Don't worry about saying their wrong, I'll do it for you: BIID has NOTHING to do with GID. For example, brain science magazines have published studies showing that gender identity is hardwired; that you can flip a switch and that animal X will not change orientation, they will change gender identity. The swedish dissections, and the French heart transplant study of 2006 show that transitioned GID patients are wired "correctly" in the brain/heart for their transitioned gender.
Now, are there neural maps and conditions where neural maps are missing - yes, one is called Spina Bifida. I have yet to find a BIID Spina Bifida person - indeed, a studies done show that a significant percentage of BIID individuals have been devotees, and/or have been in association at an early age with a person who had the particular disability they now desire. Well, yes, I can understand someone saying, I saw this person, I indentified with this person, I wanted to be this person. I can't reconsile that with accounts of GID children who appearing biologically male geniunely believe they will get breast at puberty, or GID children attempting suicide (which has been extensively recorded) to avoid puberty, or presenting at that gender from an age of 2. Obviously, many GID children are forcibly socialized otherwise (though if studies are correct, often continue to enact their gender in secret).
There is sexual orientation - this whether nature or nuture is fixed at an early age; you have gender identity which the more than a dozen DSD/intersex conditions have shown is fixed pretty much from birth - but what BIID people desire are accidents - amputations, specifically the type of amputations that SCIENCE and medicine have produced - again, no one I have found on the boards cries because they aren't a thaletamite baby or even just have CP? Even the spinal cord injuries most frequently desired and fantasized about are very specific, usually lower down, so low down that not even urinary function is lost. These ideals on not based on genuine birth defects - there are no people I have found stabbing themselves to get a cleft palate; these are cultural stereotypes of disability.
If BIID is inborn then so in anorexia, and anorexia isn't a mental health disorder that is absorbed from the culture and for whatever reasons DRIVEN in a person in hopes of happiness, no it is an in-wired condition. And sure, they might die, but at least they die happy right, because they were "hardwired" to be superduper thin and not have more than 200 calories a day?
When anyone can come up with medical evidence in humans or ANY animal that shows a percentage of hardwired disabilities which are desired AT BIRTH but which only occur to people AFTER birth - then maybe you can make a claim that the human form has multiple hardwired identities and that someone who shouldn't have been born with legs was born with them. Which would throw the medical model into the trash unless BIID people WANT children and babies to be identified and then have amputations and such done on babies and children to align them with their appropriate body type (doctors amputating the feet of a child becuase that is the "right" medical thing to do? I'm not hearing a strong argument for that - where is the protocol? The reason GID works is because of four generations of a tested protocol - if BIID needs those operations for medical reasons, then make a protocol. With the clear history of studies and protocol medical experts CAN and do make arguements and treatment for gender reassignment care and treatment or corrective assignment for children. IF BIID is the same, it should be held to the same test.)
Katrin: Well, I am still $1500 away and I hope I do have a good time. It is interesting though for example that I contacted JR (Japanese Rail) directly and they cannot tell me which of thier main city stations are wheelchair accessible - indeed they have no guide or list of what is and is not accessible and require advance notice if you are planning to use a station in a wheelchair. They also run a chain of hotels and could not give me a list of which ones had wheelchair accessable rooms. Indeed the NATIONAL rail service directed me to a non-profit agency which helps people in wheelchair (staffed by mostly volunteers). I asked the agency why JR is referring me to them to answer JR questions - are they the national representative for disability access in Japan. The agency was more than slightly miffed as NO they are NOT the agency for accessibility in Japan, it is merely that no one deals with people in wheelchairs. Japan however did pass legislation 5 years ago giving them a disability act and putting them ahead of Canada. Which is also when they put wheelchair spaces on trains. Apparently the wheelchair bathroom situation is so dire that knowing where accessible bathrooms are is more important than knowing what sights to see. But I still plan on having a good time; oddly for some reason, the Japanese have a great acceptance of assitive animals, particularly the dog AND have a great system in place for the those with visual disabilities. The film Quill will illustrate part of that. (The JR CAN say which stations have braille).
Gaina: I am not sure what words helped but I am glad they did. Actually now I am having a extremely intense and horrific day.
Shiva: to be honest, I find much of the discussion to be useless in a personal setting. I support the Elizabeth model. There is no complete adjustment, which is why I as well as most physical challenged individuals I know have made our OWN adaptive devices of one kind or another. And indeed, to throw both models aside, I "passed" hiding my disabilities for decades because I knew that the STIGMA was great than any accomadation which would or could be made. I agree that the power of societal attitude is greater many times than the limitations, or rather create as large a barrier even when physical access or accomadation is granted and since, as yet, I have not seen a plan or model to address this issue it seems one giant circle to me. I am sure all these arguments have great use; just not to me now. Much in the same way the debate on many aspects of feminism has little impact for the woman waiting at 6:00 to be picked to do day labour. Yes maybe someday, maybe overall but a week ago I asked direct a question which I had asked several long term disability advocates weeks and months before: besides providing a body on which others may be paid income to sustain, what IS my exact value and purpose societally. There did not seem any specific answers from ANY model at that time.
Kathz: Hi, thanks, I am in a bit of a bolshy mood since I find that your dentist offering you a gun to blow your brains out if you can't face your dental phobia ISN'T against the code of ethics for dentists - nor apparently, according to the BC College of Dental Surgeons, is dentistry a "Science" in the way like, "This is a broken bone" is a science. Wow, major off topic there - ummm,thanks, the daily posting has helped me focus a bit more and think on things for longer periods - ruminate as it were.
Elizabeth - thank you very much for posting and letting me know.
Thanks for that. It seemed wrong, but I just didn't know enough to say, and what I wanted to say sounded too much like stuff used to dismiss me, but I wasn't trying to justify them here.
Katrin: Sorry, visual disabilites means problems with vision, like "blind" not those who were visually different. From your trips over there did you see a lot of wheelchair users over there because it might be that I was misinformed from the travel wheelchair sites as well as the many, many accounts I have read from people with wheelchairs who have left the country or said "When I visited america it was the first time I had been treated as a full human being." - Obviously I am hoping that wheelchairs users are beloved - I would very much enjoy being proved incorrect - however, for example, the See Japan by Rail book printed October 2007 has nothing on accessiblity.
Lisa: usually I wouldn't be so bold, I'm just having a very very bad, bad day so I have all my "nice" filters removed and seem to enjoy blasting away - by tomorrow I should return to normal and want to see many points of view. Personally I do however find that the people who most use "Transabled" also know VERY little about transsexuals, except that since doctors do SRS they should do optional spinal surgery - they doctors say (no great need for medical knowledge here) that for instance, facial surgery and SPINAL surgery are two completely different things. This, it is concluded by some BIID people is just an example of the medical conspiracy. Errrr....right. Because genital surgery has been recorded by the historian Josephus and before, indeed, a completely successful sexual reassignment AND breast surgery was done over 130 years ago (it is this very unusual case) but the patient died later when the doctor tried for a full uterus transplant (something only accomplished in the last year or two). However the medical training to sever spinal nerves....er, I'm not familiar with that training at all if it exists, and amputation is always and has been treated as a limb/life balance, not an aesthetic choice even FOR those needing an amputation. Oh God, there I went again, it is just one of those days.
usually I wouldn't be so bold, I'm just having a very very bad, bad day so I have all my "nice" filters removed and seem to enjoy blasting away
No, it's fine. I needed exactly what you posted. Thank you. My previous response was not defensive at all - like I said in my original post, I don't like the way they're trying to appropriate GID to explain their own thing, and it feels wrong to me.
I did almost ask if I've been getting on your nerves lately, but I'd hope you'd just say so if that's the case. Really, though, your response was great, and I didn't feel attacked.
Lisa: no, just the opposite, I appreciate what you said at the top about the paragraph; I just feel horrid now because here I wrote this HUGE essay where I finally can articulate that yeah, life is life and I'm going on and then BLOW IT ALL by acting like PSYCHO BITCH in the comments and scare half the people who commented away (Sorry! It actually is my PMS "going to throw things at you" day - which is why Linda is trying to get me to take valium AND wine before she comes home)
This is a very interesting and insightful post. Once again I am blown away by your determination, goal setting all around ass kicking way of being. In other words I am in awe. I hope your dream of going to Japan is fufilled.
Yes, I got the 'visual impairment' thing. In regards to wheelchairs, I recall seeing 2 people in wheelchairs, but I wasn't really too aware of any specific wheelchair accessable places. Overall, I would say that none, well maybe 1, of the eating establishments we went to would have been wheel chair accessable. All but that 1 had at least 1 step into the place and 2 steps into (mostly down) the main eating area. The aquarium I would say was wheelchair accessable, but I don't know how much that was intentional and how much it was just easier to take care of the animals by moving food and cleaning supplies in carts. Hypermarts, accessable, there was an elevator to the 2nd+ floors. Didn't go on any public transportation, so don't know about there and I stayed with friends so no hotel stays.
That is odd that you've heard that assistance dogs are beloved in Japan. Becuase before I went, everyone warned me about the access issues I would have (the only major one I had was trying to get home, they didn't want to let us on the plane, and insisted that I hadn't arrived on a plane, without my dog in cargo. It didn't matter that I had all of the paper work in order. They really didn't get it when I said "So you're telling me we swam all the way from the US?") but my overall experience agrees with what you heard. I would go again in a heartbeat if I had the cash.
Terrific place to go. You can't get soba like that around here that's for sure.
Interesting post. Some of which I completely disagree with on so many levels :D I'm with Shiva's comments on the social model. It's the most liberating thing I have *ever* read - and I first encountered it as a mentally ill person and it took me a week to work out what 'barriers' might mean for me. It has changed my life. That doesn't mean it's going to work for everyone. Maybe vaccinations are a possible analogy here. Vaccinations, across the board, improve life for society. They hurt, and some people get sick from them (if you believe the anti-MMR people, some kids get *really* sick from them). They are nowhere near perfect yet. That doesn't mean we want to go back to the days when TB and polio ravaged society.* We now have to work to make vaccinations something that does far more good than harm. Bit like the social model, really. Just a thought, though... (I apologise for being a social model evangelist. It's a personality flaw on which I am working. :D)
No comment on the BIID thing, on which I share most of your views. Gah.
I hope you have a fantastic time in Japan.
*The Girl says this phrase is not very social model of me. Ha ha.
Well, I adore this post of course. To be yourself, to live your life on your terms? To be empowered to be Elizabeth in all your fierce, smart, frustrated, whiny, PMS, fill in the blank, glory?
Fucking A. (Which, according to the urban dictionary stands for fucking affirmative. Just a little useless knowledge to enliven your comments.) It's too bad that more of us can't stand up and be ourselves.
em (who really hates google for denying me the ability to post contact info. Did I complain about this already?)
Yeah, Friday Night Lights got a lot of good critical press here -- it had a hard time finding an audience, but it's been on my list of shows to catch up on.
I have read some about this BIID thing, though this is the first time I can recall seeing the word 'transabled.' But from what I've read, I certainly can't classify it anywhere near what I know about transgender anything.
It seems more like an extreme manifestation of something along the lines of what's often called hypochondria or somatoform pain disorder -- which is not at all the same as 'faking it,' but still nothing like what goes on in gender dysphoria -- and has more, in fact, in common with eating disorders generally.
As always, an interesting post.
Marla: it is far greater to be a person who is there for your children every day than anything I could do or accomplish. All I am trying to do is take responsibility of my own life, disabled or not, guess it is time for me to grow up, eh?
Katrin: I REALLY recommend the movie called Quill which is about the life of an assistive dog in Japan - thank you for the information. The resturant thing was a bit disappointing but I guess there are always the streetside raman places.
Lilwatchergirl: okay, I agree that the model can be very empowering and may have uses beyond round and round arguing. I guess my disillusion is that the social model never worked for me when I was AB so I can't say I am holding out a lot of hope NOW. Also the basis of the social model seems to be convincing the "norm" that there is no norm and that thus, there is something "wrong" or "incomplete" with their thinking now - not something I can see the AB world loving being told by a bunch of uppity PWD's (oops, was that not very social model of me either?) But, if you can get it to work, I am on board (wow that sounds quite lazy of me, doesn't it).
em: yes, well google told me AGAIN today I was a spammer and denied me access - wow, isn't that like being denied water, being denied google access? Yes, I am thinking there will be a quite a few "fill in the blank" moments - but you know, mountains have lots of little valleys before you finally ascend to the hieghts.
Wiccachicky - to be honest I to skip a lot of show and just watch the sort of goofy and responsible quarter back who takes care of his grandmother and the ex-quarterback who is a quad - the rest of the show is guys lifting weights and guys grunting, and guys hitting guys which I guess is great for straight women and guys but not so exciting for me (except when I watch with Linda and we make fun of them).
Alphabitch: I agree, I think it is a form of disorder which needs medical treatment and may, like say bipolar II, never leave the person totally satisfied (but just as sure as a massively depressed bipolar II person is that hanging will make them happy doesn't mean it is good treatment). Thanks.
I've been thinking about this post for days. I can't really write about this. I meant to write about this, or at least why I can't write about this, but I then I started to spew and spew and spew bile, and nobody wants to read my bile. At the same time, I feel uncomfortable passing judgment on other people, especially people I don't know personally, even though hubris is my muse.
The amputation version of this is called apotemnophilia, it is often compared -- inaccurately, I have come to believe, and apparently I'm not the only one -- with gender dysphoria, and it is considered a frequently contagious condition which has on many occasions spread as an idée fixe through media such as internet bulletin boards, where idle visitors have read about the "condition" and thought to themselves, "Aha! Yes! That's what's wrong with me!" and then become so obsessed with the idea that they went on to endanger their own lives to achieve the physical state they now strongly believed they longed for. And let's just say that right up to the minute I got knocked out to have my leg off I was praying to gods I don't even believe in for a miracle such that one of these people could have their leg amputated and their amputation would cure me of cancer without me having to give up a thing.
The fact that this miracle did not transpire is not the reason I don't believe in god(s), nor is it anything I consider proof that I may be right. It was just a sad little wish I had that I knew was preposterous but couldn't help desiring.
Meanwhile, part of the bile I usually spew in relation to people who long to have disabilities -- or think they do -- is my belief that they are pathologically self-absorbed and need to go do something besides sit around obsessing about themselves. Joining the Peace Corps always springs to mind first. But, again, who am I to judge? I don't know any of these people. I really shouldn't assume I know what's going on with them.
On calmer topics, that's very interesting about Friday Night Lights. I saw the movie and while I didn't hate it was also not stunned by it, so I just assumed all the hype around the series was just that, hype. Interesting to hear that there really is more to it. I'll have to put it on my list.
I'm not sure what transabled people you have been talking to but you are wrong when you say most people with BIID have no clue about their desired disability. Most of us spend endless hours online researching our desired disability not only from a medical standpoint but from a day to day standpoint. We know what our minds are thinking is absolutely crazy, more often than not we're ashamed of ourselves.
Sara: your solution was both Karmic and elegant, and both parties would have ended up happy - how many BIID's does it take to cure one stage 4 cancer? Has anyone tested this? "hubris is my muse" - darn, I have to steal this and make a card with it.
Ahiru: I think if you re-read my post you will see that I have found people with BIID ignorant of "disabilities" as in "the spectrum of disabilities" and clarify that with "I have yet to find a BIID who knows anything about neurological or other conditions involving mobility." - which I probably should have said, "other NON-SCI conditions involving mobility". And as I said, I don't really have a problem with it being treated as a medical issue in which there may or may not be resolution (like a unipolar person may never feel 'happy' for most of the time but we don't let them kill themselves either).
Perhaps it is because those with BIID perpetuate so much of the "disability" stereotypes in their desires and actions that I become frustrated with the discordance between fantasy and reality. It is bad enough to have to face that attitude every day from AB people, it is something else when people are actually trying to become that stereotype, or dipping into the stereotype and leaving the icky, awkward, annoying and yet unavoidably realistic bits behind.
I really don't have a problem if someone wants me to help them replicate my condition: I can get a few guys with sledge hammers to knock them around in the morning, give them a big glass of ex-lax followed by six days of imodium and then tell them if they DON'T take a dump regardless of the imodium they will have a scope shoved up their butt. Then, as they wheel up a hill, have someone pounding thier arms, and shoulders, and pecs to replicate the tearing of the muscles made from the choice of an independant journey. Put a mask over thier face so they can't breath 20-50 times a day, long enough a couple times so they pass out and start having a siezure - We can set that sucker up. Then I supppose just rip out some hair everyday for the autoimmune disease, have naseau for 24 hours a day, and then give the person shocks so that their heart becomes erratic enough for them to wonder if they will live through the night. NOW we are talking about a person witih disability, or at least a fraction of what they deal with.
Or is it just the wheelchair?
Seems a bit crass to suggest that someone with BIID should know everything about every disability on the medical books (and maybe some that aren't?).
How much should I have to learn about MS or MD or GID or Deafness the many difficulties wheelchair users face before it's okay for me to desire deafness? Hey, I know a bit, you know, but not firsthand knowledge (except for the GID part), but not everything there is to know.
Whatever. At least you're not the typical rabid anti-biid person.
Marie: Personally I feel that as a human being we should be aware of the conditions our fellow human beings are experiencing and suffering and have repeated held myself up as an example of a person who simply didn't care because it didn't apply to me. Well, I think that is a pretty shabby attitude in anyone; and I'm ashamed I was like that. So no, not going to award prizes for apathy.
Since most of the BIID people I read about or read their writing were concerned with mobility, that is the examples I concentrated on. You did not make that connection? Or you did not want to?
Since you wish to be hearing impaired is that: hearing impaired, deaf or Deaf? I would indeed expect you to be aware of the many paths that can lead to hearing and inner ear balance disorders as well as the most common devices and techniques used.
What is it you want me to say? That BIID people are good for disability rights, awareness and education - I would be happy to; if BIID groups went out there as ASL interpretors and fixed assitive mobility devices and did a bit of public relations saying; "Yeah, I really want to have this particularly disability and I can't help feeling that way. But it has given me the insight to bring us BIID people to make a difference in the lives of people with disabilites." - That yes, BIID is a personal tool for growth, for education, for assisting and understanding the needs of others. Instead of simply: "This is what I want!"
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