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PWD's: SHUT UP! You're not inspirational enough!

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Elizabeth McClung | 19:51 UK time, Sunday, 15 June 2008

I have a disability. This means I have a shortened lifespan, and if you have a disability, you probably will have one too. I also have days that suck. I felt the need to state that because this year from the able body world rises an old idea with the stench of rotten fish. The idea is that there are no disability/impairments, but rather just lapses in time between one able bodied state and another. And that there is no disability/impairment itself but rather a state of learning/joy/euphoria/wisdom/amazement which even when paralyzed does not involve itself with piss or s*** or frustration.

What frustrates me the most about this 'stench of a disinterred corpse' idea is that they are once again raping the experiences, memoirs and memories of US, the PWD's. Because we do not happen to see ourselves and our lives as a series of silent dots between able bodied states to make this fantasy dance and lurch for their mental comfort. The film The Diving Bell and the Butterfly has, so far, won nine awards, and I am sure it will win many more. It happens to have the same title as a memoir written by Bauby about his experience with ALIS (Locked In Syndrome). Except, that in this film, Bauby and family live the life which is palatable to the able bodied, not the one he actually wrote about: his feeding tube beeping while his catheter has fallen out covering him with piss, ignored for 30 minutes, while the tape loose on his eye tickles his lashes.

In the book he is taken by his family on Father's Day to the beach. There are many onlookers, and in his essay of it called "Through a Glass Darkly" he says, "I have become something of a zombie father." (you can see this section as film HERE) Talking of his children, "I will never tire of seeing them walk alongside me, just walking, their confident expressions masking the unease weighing on their small shoulders." Of his son, "Theophile dabs with a Kleenex at the thread of saliva escaping my closed lips. (this is word for word in the film, at which point the film stops Bauby's words while the real person and author Bauby continues) His movements are tentative, at once tender and fearful, as if he were dealing with an unpredictable animal." We are given the son in the film dabbing with kleenex then a cut to hugs and dancing, the family ALONE on the beach. Gone is the fear, the uncertainly that people have with severely disabled, with members of humanity or family they can't understand.

But these real emotions, all erased, to create a scene society desires: a happy family dancing on an empty beach. This 'fantasy' of disability ends with his wife, saying "You are the most amazing man I have ever met." In his essay, Bauby writes, "The children run to stretch their legs on the beach once more before leaving, and Sylvie and I remain alone and silent, her hand squeezing my inert fingers. Behind dark glasses that reflect a flawless sky, she softly weeps over our shattered lives."

After I mentioned the film in passing on my blog I was sent an anonymous email saying that while the person "loved" the film they would RATHER see a film about Dr Jill Bolte Taylor. Because HER stoke story has a "happy ending" (she doesn't die and she returns to complete and full able bodied function) and directed me to a 20 minute presentation on TEDTalk. Dr. Taylor was a brain scientist and while she talked for twenty minutes, the time between her stroke and when she was able to take the stage, with full body function again was eight years. The time discussing those eight years is four seconds; literally, "It was eight years until I regained full function." The talk presents the stroke as an enlightenment, an great insight which opened her up to right versus left brain thinking. Because I have had many small and a few larger strokes, I was interested in her experiences, then repelled, by this woman who turned the 40 minutes of her struggling to call for help while part of her brain died, into a series of jokes for the audience. The theme was, "I was an able bodied scientist and now I am an able bodied and ENLIGHTENED scientist." About the eight years, the frustrations, the loss of memory, loss of function, of swearing, of crying, all gone in a four second line between jokes and statements about choosing the "we instead of the me." Her book, My Stroke of Insight, is a bestseller, a "powerful voice" on stroke recovery.

In case this is news to people on OUCH: S*** happens. You probably did not plan on dealing with a disability/impairment or the way society treats those who have one. You probably have gone through a lot of emotions and struggles regarding how you view yourself, your own worth, and what you consider accomplishments and achievements, separate from able bodied society's values. I have. I have good days and bad, and I do not like that the collective populous want to think my life is about people dancing around me while I am told I was/am the greatest lesbian and lover who ever lived. Nor do I wish them to think of my days, or the destruction of my brain as an 'inspirational' coda between being an able bodied member of society and my return to it. I live; I live in a day, the same number of seconds as those in the able bodied world. Perhaps they don't take as many opiates as I do; or need as much assistance but even that, having a stranger shampoo your hair, is living. It is not always insightful or inspirational, and my eventual death does not negate the meaning or experience of my life, nor conclude that it isn't a "happy ending." It is a universal ending. No one has gotten out of life alive yet and by eliminating those eight years or silencing the real voice of a person adjusting to disability/impairment, society has written us out of the collective human condition. And while I may have to take that news sitting down, I don't have to be silent and accept it.

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  • Comment number 1.

    As a Disabled person - as opposed to a "PWD" - I don't consider the non-disabled world to be the Gold Standard. I cannot relate to it because I have never been a part of it.

    But I would also caution you against making bold statements about a Disabled person's lifespan compared with a non-disabled person's. No-one knows how long they will live - Disabled or not. And not all impairments are, in themselves, life-shortening.

  • Comment number 2.

    Thank you for your comment Chris Page, I will forward your issues with PWD to the title making department (they like them pithy!). The word "probably" was used in the sentence regarding another's lifespan becuase in a statistical spectrum everything from paraplegic to bipolar shortens your lifespan; doesn't mean I love it, but not going to ignore it. It seems a shame however that out of 1000 words, your main reading seemed to be centred on the title and the first 24.

    In which case, might I recommend a film, I hear The Diving Bell and the Butterfly has won many awards.

  • Comment number 3.

    "Nor do I wish them to think of my days, or the destruction of my brain as an 'inspirational' coda between being an able bodied member of society and my return to it. I live; I live in a day, the same number of seconds as those in the able bodied world."

    This rings very true, both on a personal level and because I read a truly sick-making magazine article recently. Now, I don't tend to buy newspapers or magazines because of such encounters but this one was in (wait for it) my therapist's waiting room. And there was an article about a girl who had been 'struck down' and 'confined to a wheelchair' by a devastating virus. And it was devastating, but it's interesting to note that I can't recall its name or the details of the condition as the article concentrated entirely on her brave battle back to health, back to the happy realm of the able-bodied. From 'me' back to 'we' as you say. Which was comforting no doubt for all the readers. Because if you find yourself disabled, you will get better won't you? Won't you?

  • Comment number 4.

    Alright Chris and Elizabeth... you are *both* people i have a LOT of respect for, and i don't want to see you arguing over terminology.

    Chris - knowing Elizabeth through her blog, i know that by "PWDs" she means *exactly* what you and I mean by "disabled people" - in fact, the very probable reason why she *wrote* "PWDs" instead of "disabled people" is because it's less letters to type, and it causes her pain and fatigue to type.

    The fact is, "PWD" is simply standard US and Canadian usage (for which there are a bunch of historical reasons, including the fact that the terminological distinctions used in UK discourse about the social model basically didn't make it across the Atlantic), and use of it over there doesn't imply the same is it would coming from a Brit. (Elizabeth has lived in the UK, and she's a bit of an Anglophile, tho a bigger Japanophile, but she's Canadian.)

    Yes, not all impairments/disabilities shorten lifespan, but many do, and of course so does the social disadvantage that we all experience, so i have no problem with saying that disabled people are not likely to live as long as non-disabled people... because it's true. IMO a lot of people with stable, non-progressive impairments don't want to face up to that (or issues like pain/discomfort/distress), because they have a lot invested (quite understandably and in many ways rightly) in proving disablist assumptions wrong and saying their lives are just as valuable as "normals"' lives.

    This IMO is a false dichotomy, as well as establishing (probably unintentionally) a hierarchy of impairment between those whose impairments are stable, not painful or distressing, and those whose impairments are progressive, painful, distressing or life-threatening.

    I'd very heavily recommend on this subject Liz Crow's essay "Including All Of Our Lives: Renewing The Social Model Of Disability", in the book (edited by Jenny Morris) "Encounters With Strangers: Feminism And Disability".

  • Comment number 5.

    Yes, it's that whole means vs end thing, isn't it? As if society is saying: "you have a disability, therefore I have decided your life has no intrinsic value to you, therefore the only use for you is as inspiration for ME." Completely dehumanising. Even as society says "but we're being NICE to you! what are you complaining about?"

    And I think MsSeahorse has hit the nail on the head. Part of it is the fear that "this could happen to me" ... So people want a Disney story to comfort them. Ironic, really, because if we acknowledged that life is still, you know, life, and worked on building a society that allowed those who are disabled or who have disabilities to live their lives in the way that best suits them, then there would be less to fear in the idea that "this could happen to me".

  • Comment number 6.

    I think you have done more through your own blog to teach me about disability than anyone else.

    Disabled or not - life is sometimes beautiful, sometimes ugly, sometimes frightening and sometimes it's just average.

    When we don't see the beauty, ugliness and all the rest from a (from many) disabled lives I find that leaves us all with a skewed persective on life. One which I personally don't think makes for a very healthy society.

    Why must we wait for disability to touch our own lives in some way before we get to start seeing all of life? I watched a programme last night where I saw young women saying fashion was everything to them. How can they not know how much life contains? Well - I am off an a tangent maybe and don't really feel qualified to talk about disability - only my own experience and ideas on life.

    All I really wanted to say was that I like it very much when you challenge the world, challenge me. We need that dialogue in the world. I need to think about all of life and not just an ideal.

    Oh and because of you I intend to read the book and hear the voice of Bauby for myself.

  • Comment number 7.

    As an English person, I much prefer 'Person with a disability' to 'DISabled person'. The former puts the emphasis on the person first where as the latter is placing you in the negative from the get-go.

    I think it's no accident American and Canadian terminology goes hand in hand with a much better (though stil not always ideal) atittuded to people with disabilities - human first, wheels second :).

    Having a disability that limits her lifespan is Elizabeths' reality which is why she's blogging about that and it speaks to many people who read her blog, which is why she includes that important word 'probably'.

    'And while I may have to take that news sitting down, I don't have to be silent and accept it.'

    Somebody should make that into a bumper sticker ;-).

  • Comment number 8.

    Thanks a lot for this essay, Elizabeth. I was bothered when I watched that TED talk and heard her gloss over her eight years of recovery. Even just to hear her say “That’s another story for another time” would have been better; I felt like the implication was that she wasn’t going to talk about it because there was simply nothing to say, no value in it. That life in recovery isn’t “real life.” Ugh.

    So many non-disabled people look at pwd’s and want to see the moral in them, the lesson, the silver lining. It’s a natural human response, to want to make sense of tragedy. The problem, of course, is seeing disability as inherently a tragedy. And not acknowledging that sometimes things are hard and do suck (but do not make life worthless), instead of trying to find some greater purpose, which can quickly remove the pwd from the equation altogether – the AB person is saying, “Well, I know your life doesn’t have any meaning to you, but it has meaning to me! Because it’s inspirational! Now, doesn’t that make you feel better?” It’s nastiness masquerading as great kindness. The pwd becomes an accessory, a prop.

    Hopefully this makes some semblance of sense. This is why Elizabeth is the one writing the essays, not me!

  • Comment number 9.

    This is very well said.

    People who are not dealing with pain or illness are scared and threatened by the thought that it could happen to them. Facing ones own mortality or pain is difficult and scary. It is so much easier to minimize our struggles and turn everything into a pretty story, easier that is for the non-afflicted. It is miserable for those who are dealing with pain, illness and death to be reduced to a courageous caricature.

    Sometimes I feel couragous, sometimes annoyed and sometimes furious. The problem is most people most people don't want to hear it.

    I've found online communities of others dealing with similar maladies most helpful for support and venting. I'm very glad they exist.

  • Comment number 10.

    I suffer from a chronic condition, and my life span will be much shorter than a healthy person my age. I can accept that. I am considered "disabled" by some, including my doctor. I much prefer the term PWD or person with disability, because I'm a person first and foremost. The disability part is just part of me..but not what defines me first.
    It's a very well written article. One I can relate to and I enjoyed reading your perspective. Thank you.

  • Comment number 11.

    Dang, Beth. What a sign-up process.

    I had no idea anyone would get their panties in twist over PWD. That's the PC "putting people first" term used over here in NA. You'd be scolded like a blue jay by a squirrel for saying "disabled person".

    As to how long we live, I don't think there is much point to counting the days. We get what we get. People who are apparently able-bodied can get mowed down by random accidents or disabilities that maybe they didn't even know they had. People with disabilities, depending on the disability, can live to ripe old ages. Maybe someone who is blind and dies at 90 would have lived to 100 if she hadn't been blind, but it would be hard to prove. On average, PWD do die earlier than the non-disabled, but no one is average, so who's to say for the particular?

    But those are pretty darn minor things to talk about when your theme is so important. The notion that seems prevalent among TABs, and that even some PWD have bought into, that disability is something to be overcome, that time spent as disabled is time not spent at all, that, essentially, the lives of people with disability are "life not worth living," is nefarious, pervasive, insidious, and needs to be countered at every moment.

  • Comment number 12.

    OK, i will take a couple of minutes to explain why, IMO, "disabled person" is a preferable term to "person with a disability".

    The social model of disability makes a distinction between "impairment" and "disability". Impairment is a physical or mental difference that limits functin relative to "normal" physical or mental function (eg CP, a missing limb, autism, deafness, MS, etc). Disability is the social disadvantage that people with impairments suffer.

    The point is that impairment is natural, whereas disability isn't - it exists because society discriminates against or fails to accommodate people with impairments. So, "disabled person" makes grammatical sense in so much as it means "person who HAS BEEN disabled by society" ("disabled" is a past tense verb, not an adjective) - whereas "person with a disability" means that the "disability" in effect "belongs" to the person - it defines it as a "thing" that the person "has", rather than a position that they have been put in.

    (Note that i think "person with [X impairment]" is fine... but it's about that distinction between impairment and disability...)

    I hope that explanatin made some sense - there are probably plenty of UK social modellers here who could put it more succinctly than that...

  • Comment number 13.

    Beth, you know I already appreciate your point of view; you'e one of the best writers I've come across, and I value the way you share your world with us.

    PWD, disabled: similar terms with different connotations and sensibilities for people on each side of the Atlantic. However, a rose by any other name is still a dead flower, cut down in its prime and stuffed in a vase to be watched as it begins to decompose.

    Chris, if you really want to be picky, Beth used the wrong spelling of "populace." Beth, I wouldn't be worried about that either, since it's a mistake I see at least thrice per month.

    I'm a person struggling through life without an official disability. I find myself wanting to use the term "disabled person" over "person with a disability" only because it's shorter. But here in the new world, it's considered rude, and more negative.

    Even in the UK, I suspect you wouldn't refer to a broken-wristed person; she's a person with a broken wrist. We people without disabilities know how to relate to that; we just don't know how to relate to someone who is difficult to understand, or who moves and balances differently to us. Since we're all going to be disabled at some point, it behooves us to bloody well learn how to deal with such social situations. It seems that, while we each have our own gold standard, we need to appreciate and learn to value other peoples' standards too.

    I can understand the scientist not wanting to dwell on eight years of struggling to heal if that's not her topic for the speech that day. But she shouldn't totally dismiss that part of her life so casually. She wouldn't be who and where her "We" is without that struggle, and she should be willing to acknowledge it.

    The Bauby biography is just like "reality tv." It claims to be something it's not. Reality tv is almost, but not quite, completely UNlike real life; and is one of the major reasons I no longer watch tv.

  • Comment number 14.

    Took me a few days to make it over here and comment... hope it's worth the wait (ha).

    I remember hearing about that book, My Stroke of Insight, and while I am glad that she recovered well, I think it may be in some ways harmful. The book itself as far as I can tell from what I was told about it doesn't glaze over the stroke and the time during which she was severely impaired by its effects, but it does use a lot of uncomfortable language and inaccurate generalizations.

    One line that stuck out to my SO's mother, whose father is a stroke survivor and cannot stand or use a bathroom on his own was, "I was happy even though I was drooling," referring to the author's state of contentment following her stroke. I don't like that. Maybe I am being too picky, but do you have to have a stroke to be happy even while drooling? Some people don't have great swallow function and yes, sometimes those people will drool-- and it's not good to plant the idea that they must be cognitively impaired if, even though they're drooling, they're happy.

    I also think it gives some false hope to families of people who have had major strokes. Her recovery was unusual, and while the book seems to offer good advice on caregiving and helping a stroke survivor regain old memories and create new ones, I fear that families and caregivers might expect her results in their own loved ones, when it's really just not that common after such a major stroke. I can just see a family member thrust into caregiving by a stroke becoming angry and accusing a stroke survivor of intentionally refusing to recover.


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