Mark Sherry wrote:
But I think the whole topic is complex, not
>simple.
>
The topic definitely is very complex, and I, for one, greatly appreciate
your honesty about both the positives _and_ the negatives as you've
experienced them. But I think that there are other areas of complexity
that are often not addressed, and the silence around these areas frustrates
me. As a fairly new subscriber to this list, I've been waiting to see if
these areas come up in discussions/debates, but they haven't as of yet.
I think there are often very distinct processes and self-relations that
individuals who acquire a disability during their lifetime go through vs.
those gone through by individuals who are born with or grow up with a
disability from a very early age. This was absolutely driven home to me as
a Ph.D. student at UC, Berkeley, in an advanced methodology class on
Interviewing. One of the student's dissertation research (for the field of
Social Health and Welfare, I believe, with an emphasis on Health Policy)
consisted of interviews with disabled folk (she was abled) regarding their
opinions of various forms of health and safety public announcements that
utilized the "danger of becoming disabled" as a part of their message vs.
some that didn't. For instance, one against drunk driving had a man in a
wheelchair and said something like, "You don't want to end up like this."
Another would be the familiar (in the US) image of two wine glasses
breaking through each other at high impact, as if in a car accident, and
said something along the lines of the current campaign's motto, "Friends
don't let friends drive drunk." Similar examples were given for work
safety issues.
The problem was in her conceptualization of the population she was
studying. As someone who grew up with a myriad of severe chronic
illnesses, along with numerous mental health issues, and spent every winter
break and good parts of summer throughout college in the hospital being
tested this way and that, with no good diagnoses coming until the past two
years (after 18 years of constant invasive testing), it was absolutely
clear to me by the responses her interviewees gave which ones had
"acquired" disabilities and which ones had lived with disability their
entire lives. She did not include this information in her study, but as I
questioned her in class on repeated occasions, I pegged every one of them.
This was at a time when I was only vaguely, if at all, aware of a
disability rights movement, and had not come upon the conceptualization of
myself as "disabled" particularly in one way or another, although I clearly
am in many ways. Rather, I just saw myself as sickly and in chronic,
severe pain, as well as having a rather distinct take on many areas of life
as a result of my mental health issues (for lack of a better term--and we
might note that this is another area of absolutely conspicuous and deadly
silence on this list. These are definitely communities that not only need
to work together, but frequently overlap. But the (physical and cognitive)
disabilities rights community often wants to distance itself strongly from
the mental health rights movement for fear of being lumped in with those
"crazies". The same lack of public education and information that we
combat with regard to physical and cognitive disabilities. And again I
have waited to see if this silence would be broken, and there have been
ample, extremely appropriate times where it was glaringly relevant to the
issue at hand, yet it never came up! Perhaps someone can reassure me here?
That I'm just misinterpreting or jumping the gun? But I fear I'm not.
Would love to hear that I am, though.)
Back to the original point. I saw myself as sickly, in chronic, severe
pain, and with a distinct, interesting, insightful, but awfully unusual
take on many aspects of life. It also meant that I saw pain going on in
other people, when most folks didn't even notice. I'm sure many of you
know what I'm talking about here. Even without having taken on the
disability "label" (and not having been forced to take it on) or connection
with the disability rights movement, I had fought strenuously (thanks to my
insane tenacity) to cultivate my right to what is clearly "disability
pride". I would not have turned away any of that pain, suffering, or
altered mental states. I understand things about the world because of who
I've been and where I'm situated (teaching a month-long section on Feminist
Epistemology at the moment). I am who I am from all of this
life-experience, and I love who I am. Even in the depths of suicidal
depression, I never would have changed any of it; rather, suicide was/is a
viable option to escape certain extreme emotional pain, but does not mean
that you do not value who you have been and what you have known with that
pain. And I had fought my family and closest friends and lovers to try to
make them understand that they did not love me "in spite" of or "despite"
all of these "conditions" (and here I quote an actual discussion/argument
with a very caring lover who has spent his life taking care of a severely
brain-damaged younger brother; in other words, someone who is very
pro-disability rights and community and a social activist to boot), but
precisely because of them. Because they are what made me who I am.
This "disability pride" can be thought of as cultivated by oneself in order
to survive in this world with disabilities. And to some extent that is
what was represented in her interviews with folks with "acquired"
disabilities. But they all said they would keep someone else out of that
position if they could. They felt the ads that I considered clearly
stigmatizing and problematic were somewhat stigmatizing and yet were also
fairly true. And if they could scare someone out of ending up in a
wheelchair, then they would.
The interviewees who had lived their entire lives with disability, and
therefore had grown into their self-identity in relation to those aspects
of themselves as well as all others from day 1 had an entirely different
relationship to "disability pride" and to those "problematic" public
service ads. They one and all thought that the ads were purely
stigmatizing. They expressed that they saw themselves as full and complete
individuals in their wheelchairs or with their other disabilities, whatever
they might be. Now the former group often also said that they saw
themselves as full and complete individuals. And sometimes said that they
would not go back now that they were here and appreciated what had changed
in their lives. But they would never wish it on anyone else. Whereas
those born with disabilities, or who acquired them incredibly early in life
so as to be formative, saw no problem with anyone else having a disability,
i.e., wishing it on others. This was just one more form of valuable life,
and otherwise they wouldn't exist as the valuable, interesting, unique, and
idiosyncratic individuals that they were. And I am not referring here to
Singer's possibilities of infanticide or even abortion. I am simply
referring to the social fact that where you stand/sit/life in relation to
all the rest of the social actors and social institutions you encounter on
a daily basis shapes (does not determine, but shapes) who you are, what you
see, and what you know. And these interviewees, connected or unconnected
to any disability movement, knew that if they had been born abled, with
basically the same genetic structure and the same family, etc., they would
be very different people.
By the way, we argued this one over and over and not a single other person
in the class could imagine that anyone would not give up past years of pain
or any other disability. This was beyond conception. So, they were not
familiar with the "disability pride" concept, named or unnamed. But, more
importantly, having lived from day 1 with disabilities, I was able to pick
out correctly every single time which of her interviewees had "acquired"
disabilities and which had been born with them. (And I realize someone is
probably going to argue with my use of "acquired". I don't know that it's
really the right word, but it's the one I've got at this particular moment
of clarity between a week of migraines). I was able to do this based on
extended quotes from the interviewees' responses to the possible
stigmatization deployed by the ads vs. the usefulness of the ads, all in
relation to their own self-conception and social conception of disability
and life. I did not expect to be able to do this. I did not set out to do
this. I had never thought along these lines before. But it was glaringly
apparent to me from each and every quote.
So, for instance, if I were to make a list of negatives in relation to my
various disabilities, they would all be based in and around issues of
treatment and social understanding/acceptance/education/accessibility.
None of the negatives have to do with the supposed "underlying disorders"
themselves. They are, rather, frustrations with the side effects of
treatments that are currently available. Or the need to keep under cover
my disabilities as best as possible if I wanted to make it through a
mainstream, haughty graduate program. And my overwhelming anger, at times,
at precisely that. And lack of knowledge/awareness by, not just the
general public (which is so bad that it's beyond belief, and even worse
regarding mental health), but the medical establishment itself. etc.
In fact, I have more of a negative about the mark of a high IQ on a girl in
a small, rural town, and the stigmatization incurred by that, as well as
the lack of understanding of how to appropriately teach such a person
(well, she can take care of herself, so just let her sit over there and
read for 3 hours) than about any of my physical or mental disabilities.
So, in fact, we come full circle to the IQ debate, but not being marked as
"mildly retarded" (which of course is a terrible marking, and I've spent my
life with a mother who is a school psychologist and spends easily half of
her time fighting teachers and parents who _want_ to classify (their own!)
kids as retarded or this or that in order to get special funding (social
security) or get them out of their class (in the case of the teachers),
which she generally refuses to do for all the reasons brought up in the
post by the woman with the adopted daughter whose test results they
trashed.), but at the other end. This was the absolutely alienating hell
for a girl in a working-class small town. I didn't spend my time wishing
the pain would go away; I spent my time wishing that I was cuter and just
got C's. Clearly, this might have been very different had my disabilities
been more visible. Or if their visibility had mattered more (I often had
to put my head down during tests because I was having partial complex
seizures, undiagnosed at the time, but since I could finish all the tests
in about one-quarter of a class period and get between 98 and 100 on them,
no one worried much about it. In fact, no one worried about it at all.)
But the obviousness of who was who in this particular study suggests to me
that it might not have been that different in its end results. The
formative process would have taken different paths, but the disabilities
would have always been a crucial aspect of self-identity and self-valuing
(and, of course and unfortunately, sometimes devaluing). This is
tremendously different from when someone has a formed identity as a young
teen and anywhere beyond that in life (and maybe earlier), and then it
drastically changes.
The whole disability as negative vs. positive debate, all explorations of
an epistemology useful for disability studies, and even basic questions of
community identity, self-definition, and solidarity in terms of an activist
movement need to take these crucial differences into account.
Sorry this post was so long. I guess I've just been waiting for someone
else to say all this different stuff and no one has, so it all came out at
once.
Natasha Kraus
Natasha Kirsten Kraus
Assistant Professor
Department of Sociology
430 Park Hall
Box 604140
University at Buffalo-SUNY
Buffalo, NY 14260-4140
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(716)645-2417 x 457
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