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DISABILITY-RESEARCH  June 1999

DISABILITY-RESEARCH June 1999

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Subject:

Re: in or out of the ivory tower?

From:

homan <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Thu, 24 Jun 1999 21:39:41 +1000

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (174 lines)

Dear Jennifer,

I do not take this personally, but as I have said before, the occasional
stick of gelignite in the pond may not be an elegant way, but it does
catch some fish.

My comment followed the one that the 'ivory tower set' notice the
quotation marks, notice too that I am responsible for introducing the
term, as first reaction to a problem wants to write a manual.

have a good time, rgds John

Jennifer Sutton wrote:
> 
> 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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