Happy Fourth Anniversary, AMP-L - Part Two of Five

[OnwardMike at aol.com]

THE POSTS: Mary Lou B., George B., Bill B.

Subj:    Re: AMP-L/Sci-Fi & stuff
Date:   96-02-11 08:41:38 EST
From:   MBres55887 at aol.com
From:   bbaughn at jax-inter.net (Bill Baughn)
To:       RENARDWC at CTRVAX.VANDERBILT.EDU

Russ, Wayne and all --

Russ, you said about your sci-fi character:

RA> The villain is a bilateral BK amputee. I thought it would be an
    ironic twist to have the downtrodden blaming the average in a kind
    of a reverse persecution.

Sure seems like some variation on that theme's been done a lot....
disabled characters in fiction and film are mostly evildoers, overcomers
or inspirational.

RA> Now, after reading all that I have on the amputee lists, I wonder if
    I resented people who could just buy a leg or two and keep on
    walking, better than ever.

Nah.... Wayne and Tuvia and Lindsay and others would probably say in
unison that "better than ever" is a prosthetic manufacturer's
advertising smoke, which of course you know perfectly well. It could
also be that you were trying to suck the sentimentality out of your
character...

You mentioned that an Alta Vista web search turned up PERSPECTIVES ON
DISABILITY searching on Harlan Hahn.  "Perspectives.." is an expensive
tome featuring some excellent articles and also some less thoughtful and
progressive material in my opinion. The Hahn and Ashe articles I
mentioned earlier are both included.

To pique further your curiosity, Hahn also wrote an article entitled
"Can Disability be Beautiful?" (in "Perspectives," too).  It's a
contentious and provocative piece that suggests that disability has
sometimes been historically associated with what he terms a "subversive
sensualism" reflecting a curiosity and fascination that is sometimes
infused with erotic impulses. He offers that the supposedly more
civilized tradition of charity and help has transformed disabled adults
into sexless beings. The article traces the evolution of these currents
to the present. At one point he opines that the reinterpretation of
disability from a sensually stimulating attribute to a socially and
aesthetically devalued characteristic has advanced to a point where
fairy tales such as Cinderella have been transformed from a story about
women who mutilate themselves in order to win male approval to a legend
that teaches the rewards of hard work and incomparable beauty.  (You
might say "Huh?"  I sure did.... still, an interesting notion).  And
furthermore, he says Snow White could never have retained her purity or
reputation by living with seven adult males if they had not been
described as harmless "dwarfs". Yeoww.

Still, his stuff challenges the same wrongheaded ideas John Ollason
notes in his post provided to us by Wayne:

JO> I believe that the people making money out of disabled people are
    actively antagonistic to the message that we are trying to publish.
    If people don't feel that their impairments are disgusting, they may
    not feel that they have to hide them....

Umm. And I have a politically incorrect question. I visited Russia this
past fall. I worked with a group of disabled people who were developing
disability rights legislation. About half the group were amputees. The
upper extremity amputees wore beige artificial hands. It seemed to me
they didn't provide much function. People used them as a weight to hold
a piece of paper on the table, or as a place to hang a briefcase or bag,
though a few people could eat with a fork captured between the fingers.
I assume they mostly served the purpose of helping the person 'pass' in
a society that has a long way to go to accept its disabled members as
full bore citizens.

I have always had a bad attitude about how much money companies make who
manufacture disability stuff...but John's post made me think for the
first time about the cost associated with camouflaging disability. Sorry
to have been obtuse.  Wayne, we're on the same side of this one.

WR> And Mary Lou, I am certain you saw the recent linking of people who
    have sex with amputees, to pedophiles, in the media?... My wife was
    not amused. And if I opt to have sex with myself, what does that
    make me?

Uhhh.... Gee, Wayne.... mebbe a narcissistic acrotomophile.... wheeee.

I imagine everyone's sick to death of Hahn by now, but yeah, Wayne...you
basically got the picture about his theory, though my Reader's Digest 
summary certainly didn't do his arguments justice. The only small 
clarification I would make is Hahn and others see charity and rehab as a 
social policy response to disability. The basic (and simplified) premise
is that people w/ disabilities are broken and need to be fixed... enter
the medical model and rehab.... if fixing -- read curing -- is
impossible, i.e., I'm not going to walk, you're not going to grow a new
leg, then we enter the realm of the permanently broken, permanently ill
(can't work, be productive, contribute, participate) who must be cared
for and provided charity. If we accept that this model drove the
development of the US's largest disability programs.... SSDI, Workers
Comp, SSI, and was the only model until the mid-1970's, it follows that
society generally accepts the premise that disability equates with
incapacity. The incapacitated, the sick are also -- taking the analysis
a bit further -- asexual, non-sexual despite the fact that we (you and
I, and the rest of us here) know it ain't so.

I was in New York a few years ago for the purpose of meeting with the
vice president of the Ford Foundation to discuss their interest in
funding the organization I worked for. Shortly before the meeting was
scheduled, I went to Grand Central Station where I was going to be
joined by a colleague who was also attending the meeting. I was a little
early so I bought a cup of coffee and parked myself. Mind you, I was
dressed in my grown-up suit, briefcase in hand. I hadn't been there five
minutes when a well dressed grey-haired woman walked up to me and
dropped a quarter in my coffee cup. I was speechless. She saw wheelchair
and immediatly assumed 'incapacitated,' 'sick,' 'feeble,' and you can
assume she didn't envision me as a sexual being either!.... Hahn's
point, I think, about perception. The irony of this story is that $.25
was the only money I made on that trip.

On 2/8 Tim Adams wrote:

<< Let's keep in mind folks, we're not just here to make friends
   (although we have) and adopt a "I'm ok, you're ok" mentality. This
   amputee business is very serious and deserves to be treated that way.
   IMHO, we've got to quit concentrating on the fringe issues, and get
   back to amputee issues.

I've had such a hard time figuring out what, exactly, are amputee
issues. But I imagine Snow White might be considered rather far
afield....

And finally, I wonder what people are thinking now about the destiny of
this little band, the SJUVM list... issues of concern and interest to
amputees, and those with other disabilities? Lindsay, whose voice
resonates in my mind, said she abhors "group think." I wonder where this
leaves us?

Thanks for wading through these barely hooked together threads.

Mary Lou

===============================
Subj:   Re: AMP-L Patient Harm/Cosmetic Option/Id. vs. Odd 
Date:   96-02-14 16:21:35 EST
From:   PHOENIGS at aol.com
From:   bbaughn at jax-inter.net (Bill Baughn)
To:       RENARDWC at CTRVAX.VANDERBILT.EDU

Prosthetics, the fitting and alignment of a limb, the creation of a
socket for the comfortable functional use of an amputee is a matter
requiring real talent for the best outcome to be realized.  Is it a
process of trial and error?  At one end of the spectrum, it is
consistently "trial and success" and there is no real reason why this
could not ALWAYS be the case.  At the opposite end, and too often, it IS
simply trial and error and real success is too often missing.

Limb fitting is the aegis of a Master Craftsman, a top-end professional.
Unsupervised journeymen have no place in the handling of the amputee and
amputees must insist on being fitted ONLY under the direct supervision
of a Master Craftsman.  This is the basic truth which is so dreaded in
all the vitriol stirred up by the few simple ideas I have stated.  And
the remedy is implicit in the format suggested above - a hierarchy of
skills and supervised practice - which could put into place a system
which guarantees superlative fitting for all amputees.

Go ahead, have at it -- or bury your heads in the exclusive concern over
certification matters.  Some version of what I am talking about is
necessary and will do what certification alone will never never
accomplish.

And Bill:

A truly blue-ribbon thread, and your credentials as a card-carrying SD
are amply reconfirmed, rest easy.  This discussion will plumb the very
depths of what it really means to BE an amputee AND what it means to
truly ACCEPT being an amputee (substitute disabled in general). In the
course of this discussion the vast extent and subtlety and great power
of the paraphobia about disability will be illuminated for all, lit up
like the marquee of a Broadway theater on opening night.  Hoo-Ha!!!

(I try to modify my communications skills but to little avail.  As Wayne
has suggested, it is probably true that, isolate that I am, I have known
intimately more books than I have people.  And of course, those few
people were pivotal for me.  My sentences parse, I make sure of that ---
when in difficulty try mouthing them as you read - that's how I check
what I'm writing.)

Finally, oh Mary Lou, you write so sweetly, it sings like a something of
larks.  I am roundly trounced for my prose.  Is it poetry? Noooo not
quite.  But its convolutedness sometimes makes me think of the rise and
sinuousness of some inspired often elegaic poetry.  Although I have no
illusions as to my own merit in that regard the urge to follow what I
feel is their method, the way they 'pitch' a line, a stanza, an argument
seems to have become 'installed' in my writing program.  It seems
involuntary, not sure I could change it.

Maybe an editor will hit me on the side of the head when I get to that
point with the book which conspires with itself inside my skull.

Meanwhile, it is a pleasure to read you and get the texture of your
thoughts.

Cheers,

Geo. B.

=============================== 
Subj:   AMP-L Cosmetic Option
Date:   96-02-14 20:40:26 EST
From:   bbaughn at jax-inter.net (Bill Baughn)
To:       RENARDWC at CTRVAX.VANDERBILT.EDU

Hi All:

Since going into the lurk mode on SJUVM, I find that my SD [editor's
note: SD = Shit Disturber] title is in jeopardy. Therefore, let's get a
little controversy going.  What follows is a true story.

I am a stagehand (Theatrical Technician).  I recently operated a
spotlight at a symphony concert at an outdoor venue here in
Jacksonville, FL.  This was one of those fund raiser things where tables
are set out for the supporters and they are served wine and cheese while
the symphony plays on stage.

My position was on a tower that gave me a view of the big bucks area
between the tower and the stage.  Before the concert started, I noticed
an attractive lady and her husband table hopping.  She was a high AK and
was wearing shorts and a tank top, traveling on forearm crutches sans
prosthesis.  Her shorts covered her stump while walking but at one table
she apparently got tired and sat sidesaddle on the edge of the table
with her stump visible to everyone.  If the assumptions of most amputees
I know who are firmly attached to the cosmetic option are accurate, the
folks at that table should have tossed their cheddar and screw top
chardonay, but the smiles, laughter and chatter continued unabated.
Maybe it was a table full of devotees.

Amputees are the only members of the disability community that have the
option to conceal their limb deficit.  With the exception of Symes and
BK amps, the option to conceal the fact of lower limb limitations is not
really present. I have known at least one AK amputee who explained his
limp as arthritis.

Is the cosmetic option a viable option if it means that the amputee
avoids any activity that would reveal their body as it really is?

Are the great unwashed masses uncomfortable around a person with a
visible disability?

If so why and what responsibility does the disabled person have to
relieve that discomfort?

Bill Baughn

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END OF ANNIVERSARY ANTHOLOGY -- PART TWO OF FIVE