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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