You know, I see many posts on this list, not just this one, which suggest
that those of us in academia live in ivory towers. To be blunt about it, I
resent this kind of statement. Why must this us vs. them attitude be
perpetuated? To whom is it helpful?
For my part (and I venture to assert that I am not alone), I'm doing
disability studies *precisely* because it has "real world" (whatever that
is) implications and applications. Last time I checked, I didn't have any
life-maintenance tasks done for me way up high in my ivory tower. As a
matter of fact, I probably need some directions to find it, since there are
no ivory towers where I am.
Is it not true that research benefits people outside of academia? Or is
the implication, from non-academics, that it's all a big waste of time, and
people should just be out on the front lines, advocating? If so, that
makes no sense to me. Information we have from research *helps* us to be
better advocates, doesn't it?
And, for my part, I don't think I have a split personality. My advocacy
"self," and my academic "self," are all rolled up into one. I can't do one
without doing the other.
I suppose this message could be called a flame. If so, accept my apology
for it, but I'd would *really* like to know why this attitude is helpful to
anyone? John, please note that this is a general inquiry.
Jennifer
At 07:51 AM 6/24/99 +1000, you wrote:
>Dear Diane,
>
>The first bit of integration and awareness that may be needed is to have
>the ivory-tower-set achieve some equity and understanding of the real
>world most of us live in.
>
>My wife and I are carers for an intellectually disabled daughter. Some
>years ago we assembled a 'reality check' on the ten things that we, as
>carers found the most insensitive, boorish, inconsiderate: that realy
>crapped us off. (see below)
>
>May be some people with disabilities in the real, and pretend world
>should start looking at doing something similar. I remember a blind
>man's observation that when in a lift: 'nobody talks with me, but they
>all talks to my dog'.
>
>Have a good time, rgds John
>
>> Ten Guaranteed 'Turn-Offs' for Carers
>>
>> 1 - 'We know how you feel' - Whether sincere or patronising, it is not
true. Nobody but other carers can begin to understand the frustration,
worry, desperation, unrelenting pressure and hopelessness that dominate
carers lives.
>>
>> 2 - 'You are very special people' - Balderdash. We started off like
everybody else. Purely by chance did we become carers. We are not
volunteers or 'chosen people'. We cope as best we can with an impossible
situation for only two reasons: We deeply care for and love the person we
care for, which is all right; and there is no alternative, which is very
frightening.
>>
>> 3 - 'Devaluation by association' - People patronise us carers and speak
to us as if we are the disabled ones. We carers are usually pretty sane,
and only abnormal in our desperation. We expect to be treated accordingly.
>>
>> 4 - Having a conversation about the person with a disability in her or
his presence, as if the person isn't there' - This is a rude and demeaning
thing to happen to anyone, but particularly to persons with disabilities
who are already devalued, and may have little ability to defend or assert
themselves.
>>
>> 5 - Rushing in to give assistance without ascertaining if this is
necessary or wanted' - Most people with disabilities are proud and
protective of what they can achieve on their own, no matter how slowly or
imperfectly this may be in other people's eyes. To have things taken out of
their hands, even if done out of kindness, only adds to their frustration
and affects their self esteem and sense of worth.
>>
>> 6 - 'We know better'- It is evidence of a massive arrogance, a deep
seated belief that it is proper to make decisions profoundly affecting
people with disabilities and carers, without any consultation, and that
when these people object, as they should, the complaint can be dismissed on
the basis of 'When you understand'. Carers do understand, they are getting
the mushroom treatment and don't like it one bit. It is not only
contemptuous and insulting, it also totally ignores the vast repository of
specialised knowledge and experience that carers and many persons with
disabilities have. It is an attitude that calls into question for whose
benefit services are run
>>
>> 7 - The perceptions of 'charity'' - Carers, are people in crisis. Even
though their tragedies are behind closed doors, they are real tragedies.
Carers and people with disabilities are Queenslanders too. They have every
right to expect help from the community at large, and as represented by
government. Without it they are condemned to remain the most
underprivileged minority in the country, even worse off than out-workers in
the garment industry. Through no fault of their own.
>>
>> 8 - 'Turning fund-raising into a circus that demeans and degrades the
very people it is supposed to assist' - Many worthwhile services have to
rely on fund-raising to survive. It gives the community the opportunity to
help where it is needed. It is inexcusable that, in order to raise money,
the dignity and esteem of people with disabilities and carers are
compromised, as we see so often.
>>
>> 9 - 'Questionnaires and Surveys' - Carers are bombarded with them, they
come from everywhere. There never is any feedback though about the vital
knowledge they have uncovered, and they certainly don't make any difference
to our plight.
>>
>> 10 - 'The blatant and unashamed duplicity of government' - When reading
policy and legislation on disability it is easy to believe that we have
deeply concerned and compassionate governments, who understand what needs
to be done and are committed to doing the right thing. It exudes confidence
and hope. Until we ask '. . . but what about the money then?' This is when
we discover that they have taken us to the well, but again, do not allow us
to drink. Nothing has changed. The rhetoric has improved, but not the
funding. There is some money for minor and token services, but the real
crisis, like supported accommodation and post school options do not get
addressed.
>>
>> John Homan,
>> 19/7/96
>
>[log in to unmask] wrote:
>>
>> I find it interesting that people in academia approach diversity in a way
>> that's most comfortable to them....let's write an instruction manual and
>> teach people the "right" way to interact.
>>
>> A lesson I have learned from the diversity work I have done with
Corporations
>> is this one: People always say, "just tell me what to do and I'll do
>> it"...however, they only start to "get diversity" when they feel it in
their
>> gut through their own personal interactions and experiences. Once they
"get
>> it", they know what to do.
>>
>> If the format must be a book, I think it would be more enlightening to put
>> together a book of personal stories and experiences, what it's like to
try to
>> exist in an "able-ist" (is that a term?) world--in this way you begin to
>> foster understanding. I'm not saying that everyone's experiences are the
>> same, but I believe once you begin to hear people's stories you become much
>> more aware, and also can often relate their experiences to your own
>> experiences, and also your own behavior towards people who are
different. It
>> would also be much more interesting to read, and may get some dialogue
going
>> on these issues.
>>
>> Just a suggestion...
>> Diane King, MS, OTR
>> AMC Cancer Research Center
>> Denver, CO
>
>
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