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DISABILITY-RESEARCH  June 1999

DISABILITY-RESEARCH June 1999

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Subject:

Re: prevention vs. inclusion?

From:

[log in to unmask] (Johnson Cheu)

Reply-To:

[log in to unmask] (Johnson Cheu)

Date:

Fri, 11 Jun 1999 20:16:01 -0500

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (228 lines)

Hello all-- I agree with all Carolyn has said here, though yes, it took a
while to learn how not to think of myself as "wrong". (Then again, I'm
congenital so maybe that makes a difference?).  I've figured out that I
like myself and the way I see  the world.  I like being a
poet/teacher/academic-in-training (and I write and talk a lot about being
disabled.)  Would I still be all those things were I not disabled?
Probably.  Would I be all those things if I weren't Asian-Am. (funny
though, few ask if I'd rather be White, but I get asked all the time if I'd
rather be AB) Probably too.  But I wouldn't be who I am now without all
those things, and I like who I am. My answer to both is always the same.
This is the reality I know (though I imagine a lot), so I'd have to say no.
Then again, (some days, not all) I'd like the privlidges and the power
that come with being White, and I'd like the privliges and the power that
come with being AB. People misinterpret that as my saying "White is better"
or what-not, but I always say it's not about my identity or my desire even;
it's about the way the world/society is set-up.  If the world wasn't
ableist, then there'd be no need for this discussion.  See Patricia
Williams The Alchemy of Race and Rights.

More to Martin's ? though.  When I used to work in rehab/for a rehab
company, I used to see this paradigm shift in some.  It puzzled me for a
while, but then I had an enlightening conversation with a few people who
went through this shift (and not everyone did; some stayed grieving/pitiful
or angry and lived there). Once they accepted this (disability) and got
some sense of their life back (learned to use a chair/cane, went back to
work. what-not,) it became a matter of learning to like/live in the reality
of their lives now.  Did they miss/wish for certain things of their
"previous" life?  Yeah.  But that receeded, kind of as one said "like
getting over a death". The pain lessens and you get on with it.  Over time,
life became not some kind of either/or thing "I wish this/I wish that".  It
just became life and disability became part of the fabric of their
experience and what they learned from it.  They liked what they learned.
So they learned to like and love themselves again, or in a whole new way.
And what's so bad about that?

--Johnson

>
>> I am really interested in disabled people who argue for this perspective. Is
>> it a perspective that only belongs to those who become disabled? Is it
>> because they have some personal investment in their disability? - "My
>> paraplegia was the best thing that happened to me" - patient in a spinal
>> unit. Why is there this view amongst some disabled people? Is it because
>> much of their life improved following their disability? Did they meet their
>> partner as a direct result of their disability? Did they acquire a new and
>> better social life? Did they find that their cultural experience was such
>> that they were celebrated (not many) by those around them? Did they find
>> that they could stop doing things that they felt obliged to do but which
>> they did not enjoy/ were not good at - work/sex/previous relationship(s)?
>> Did it reunite them with people they had 'lost'? What is going on? How, in
>> sum, can people have a preference for their disabled self over their
>> previous self?
>>
>
>Personally, I'm not sure how you've arrived at your questions -- which are
>steeped
>in some pretty heavy assuming.  Regardless, here's an answer from one Disabled
>person who does not see her disabilities as inherently wrong and, therefore, in
>need of cure or, for that matter, prevention.
>
>I grew up with my disabilities (blindness and asthma).  I don't remember
>ever being
>able to see "clearly" (as in the "norm" of visual acuity) and, well,
>breathing has
>always been an athletic event.  So, I don't have any "before" to compare to --
>cross out about half the questions as not applicable.
>
>Getting to the "why is there an assertion that disability doesn't
>necessarily need
>prevention or cure," I'm inclined to ask, "Why Not?"
>
>I like the way I see the world and have no desire or use for 20/20 vision.
>Audre
>Lorde, in her biomythography Zami, talks about when she was little and was
>legally
>blind and how her mother would scold her for staring at things and people
>in public
>and she couldn't understand how one could not stare because things looked
>so cool.
>She reiterates this point in a poem entitled, Contact Lenses.  She also
>alludes in
>the poem that how, once her sight was corrected, things didn't look as
>interesting.  Like Audre Lorde, I've always liked the way things looked, as is:
>the swirl of colors, the melding of things, the lack of sharp edges, the
>constant
>movement of it all.  In a way, it's what Lois Keith has described as the "more
>womanly way" of viewing the world.  That's not to say it's better than 20/20
>vision.  It is to say that it is not worse than seeing 20/20.  It's just a
>different way of seeing the world (literally).  And difference is not a
>bad thing.
>
>With asthma, it's not a point of "I like the way I breath."  I don't.  It's
>difficult.  Throwing up a lung is not attractive or fun.  Medications, so
>that I
>can function, are expensive and many of them have various personality
>altering side
>effects (although doctors will only admit to "the shakes" and water retention).
>And due to the various triggers, my social life can, at times, be nonexistent.
>However, I'm also not very fond of other bodily functions and/or nuances
>of body
>parts of mine -- menstruation (and all the nice stuff that goes along with
>it), my
>hair, my excessive have-to-go-to-the-doctor-to-get-it-blown-out earwax ears, my
>narrow feet, etc.  I wouldn't want to not have them or wish I'd never had them
>anymore than I wish I'd never had asthma because it is a part of me and these
>experiences (the good, the bad, and the ugly) are a part of me.  These
>traits, and
>the experiences that I have had because I have these and other various
>traits, make
>up who I am.  And I happen to like who I am and don't see anything wrong
>with there
>being other people like me either.
>
>So, for me, it isn't about avoidance or finding somebody or personal
>investment or
>popularity/celebraty.  In a nutshell, it's about self-respect and it's
>about self
>love.
>
>--
>Carolyn
>check out, "Passing, Invisibility and Other Psychotic Stuff" at
>http://www.tell-us-your-story.com/_disc68r/00000003.htm
>Add your story
>at http://www.tell-us-your-story.com
>Finding What We Have In Common One Story At A Time*
>
>
><!doctype html public "-//w3c//dtd html 4.0 transitional//en">
><html>
>&nbsp;
><p>Martin Fletcher wrote in part:
><blockquote TYPE=CITE>I am really interested in disabled people who argue
>for this perspective. Is
><br>it a perspective that only belongs to those who become disabled? Is
>it
><br>because they have some personal investment in their disability? - "My
><br>paraplegia was the best thing that happened to me" - patient in a spinal
><br>unit. Why is there this view amongst some disabled people? Is it because
><br>much of their life improved following their disability? Did they meet
>their
><br>partner as a direct result of their disability? Did they acquire a
>new and
><br>better social life? Did they find that their cultural experience was
>such
><br>that they were celebrated (not many) by those around them? Did they
>find
><br>that they could stop doing things that they felt obliged to do but
>which
><br>they did not enjoy/ were not good at - work/sex/previous relationship(s)?
><br>Did it reunite them with people they had 'lost'? What is going on?
>How, in
><br>sum, can people have a preference for their disabled self over their
><br>previous self?
><br>&nbsp;</blockquote>
>Personally, I'm not sure how you've arrived at your questions -- which
>are steeped in some pretty heavy assuming.&nbsp; Regardless, here's an
>answer from one Disabled person who does not see her disabilities as inherently
>wrong and, therefore, in need of cure or, for that matter, prevention.
><p>I grew up with my disabilities (blindness and asthma).&nbsp; I don't
>remember ever being able to see "clearly" (as in the "norm" of visual acuity)
>and, well, breathing has always been an athletic event.&nbsp; So, I don't
>have any "before" to compare to -- cross out about half the questions as
>not applicable.
><p>Getting to the "why is there an assertion that disability doesn't
>necessarily
>need prevention or cure," I'm inclined to ask, "Why Not?"
><p>I like the way I see the world and have no desire or use for 20/20
>vision.&nbsp;
>Audre Lorde, in her biomythography Zami, talks about when she was little
>and was legally blind and how her mother would scold her for staring at
>things and people in public and she couldn't understand how one could not
>stare because things looked so cool.&nbsp; She reiterates this point in
>a poem entitled, Contact Lenses.&nbsp; She also alludes in the poem that
>how, once her sight was corrected, things didn't look as interesting.&nbsp;
>Like Audre Lorde, I've always liked the way things looked, as is:&nbsp;
>the swirl of colors, the melding of things, the lack of sharp edges, the
>constant movement of it all.&nbsp; In a way, it's what Lois Keith has described
>as the "more womanly way" of viewing the world.&nbsp; That's not to say
>it's better than 20/20 vision.&nbsp; It is to say that it is not worse
>than seeing 20/20.&nbsp; It's just a different way of seeing the world
>(literally).&nbsp; And difference is not a bad thing.
><p>With asthma, it's not a point of "I like the way I breath."&nbsp; I
>don't.&nbsp; It's difficult.&nbsp; Throwing up a lung is not attractive
>or fun.&nbsp; Medications, so that I can function, are expensive and many
>of them have various personality altering side effects (although doctors
>will only admit to "the shakes" and water retention).&nbsp; And due to
>the various triggers, my social life can, at times, be nonexistent.&nbsp;
>However, I'm also not very fond of other bodily functions and/or nuances
>of body parts of mine -- menstruation (and all the <i>nice</i> stuff that
>goes along with it), my hair, my excessive
>have-to-go-to-the-doctor-to-get-it-blown-out
>earwax ears, my narrow feet, etc.&nbsp; I wouldn't want to not have them
>or wish I'd never had them anymore than I wish I'd never had asthma because
>it is a part of me and these experiences (the good, the bad, and the ugly)
>are a part of me.&nbsp; These traits, and the experiences that I have had
>because I have these and other various traits, make up who I am.&nbsp;
>And I happen to like who I am and don't see anything wrong with there being
>other people like me either.
><p>So, for me, it isn't about avoidance or finding somebody or personal
>investment or popularity/celebraty.&nbsp; In a nutshell, it's about
>self-respect
>and it's about self love.
><p>--
><br>Carolyn
><br>check out, "Passing, Invisibility and Other Psychotic Stuff" at
><br><A
>HREF="http://www.tell-us-your-story.com/_disc68r/00000003.htm">http://www.t
>ell-us-your-story.com/_disc68r/00000003.htm</A>
><br>Add your story
><br>at <A
>HREF="http://www.tell-us-your-story.com">http://www.tell-us-your-story.com<
>/A>
><br>Finding What We Have In Common One Story At A Time*
><br>&nbsp;</html>

Johnson Cheu
[log in to unmask]
http://people.english.ohio-state.edu/cheu.1
The Ohio State University*English Dept.*421 Denney Hall*164 W. 17th. Ave.*

Columbus, OH 43210*(614) 292-1730 (O)*(614) 292-6065 (D)*(614) 292-7816 (Fax)




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