Good evening Dr Nancy,
I do not have a disability, nor am I an academic. I am however the father of
a 30 yr old daughter who is disabled. Two bits I wish to contribute to the
discussion, the first one about language, which is a shot mainly aimed at
social workers and other industry professionals, but may have some bearing
on the media:
" ... partners (professionals and people with disabilities and their
families/carers) must also share a common language as without it no
meaningful communication is possible. Every profession develops a language
of its own, and the disability and health professions are no exception.
= The professional jargon serves as a 'shorthand', it expresses matters
specific to the dicipline, it attempts to rationalize the factual and
abstract alike, and makes sharing ideas and knowledge with the rest of the
world very difficult if not impossible.
= People with disabilities, and their families on the other hand communicate
most of the time at an emotional, rather than rational level. Quite
reasonably so as their problems, prospects, options and decisions generate
intense feelings of angst, relief, dread, surprise, expectation, depression,
hope and fear: it is their lives past present and future on display. The
professionals need to become bi-lingual. They have to learn to listen and
understand, they also have to learn to express themselves in what to them as
individuals is a natural language, but professionally a foreign tongue. "
My 2nd comment is about the things that we most detest:
"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"
Good luck, rgds John
----- Original Message -----
From: Richard Jacobs <[log in to unmask]>
To: 'Dr. Nancy Lane' <[log in to unmask]>;
<[log in to unmask]>
Sent: Thursday, January 27, 2000 3:19 PM
Subject: RE: disability language
> Dr. Lane, I'm not sure if this is what you're looking for, but it's
> something I feel very strongly about. A depressingly high percentage of
> television and newspaper stories about disabled people are patronizing,
> cloyingly "warm and fuzzy," or hopelessly 50's-ish in their medical-model
> approach (people are portrayed as "suffering" from or a "victim" of a
> disability, "confined" to a wheelchair, and working bravely to overcome
> their "handicap" and be like "normal" people. Obviously you're well aware
> of the problem.
>
> After years of trying unsuccessfully to change these attitudes locally by
> talking about how reporters write about disability, I'm pretty much
> convinced that it would be more effective to catch future journalists in
> school (as you are doing) and get them to THINK about disability and what
it
> means personally, socially, politically, sexually, and lots of other ways.
>
> -Dick Jacobs
>
>
>
> -----Original Message-----
> From: Dr. Nancy Lane [mailto:[log in to unmask]]
> Sent: Wednesday, January 26, 2000 12:14 PM
> To: [log in to unmask]
> Subject: disability language
>
>
> I have been asked to give one lecture on writing about disability in an
> under-graduate course on journalism. My field of expertise in regard to
> disability is primarily in religion, theology and spirituality. Since I
> live with a disability I know some of the areas I want to cover. However,
I
> am not sure I am up to date on language issues--although I read the posts
on
> language with interest. While I have my own thoughts on language, I would
> appreciate some suggestions to consider and ref to any articles or
> books/chapters that are "not to be missed" for future journalists.
>
> Any other thoughts on points I should cover are welcome. My primary point
> will cover how negative and stereotypical language perpetuate negative
> attitudes and myths about people with disabilities.
>
> Thanks, (The Rev.) Nancy Lane, Ph.D.
> [log in to unmask]
>
>
>
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