Good evening Judy,
We can identify with that. On many occasions we have had to point out ,
sometimes forcefully, that it is our daughter who is disabled, not us,
her parents. We are being marginalized by association, particularly by
the professionals and workers in the disability area. Just to make sure
that everybody knows how we feel about these things as parents and
carers:
"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"
Have a good day, rgds John
[log in to unmask] wrote:
>
> >
> > I felt the particular 'label' was irrelevant.
> > My son has severe verbal and motor developmental dyspraxia and severe dyslexia.
>
> Sorry to rush in with assumptions - the stories of parents of children
> with the new disabilities are all so similar - and then the labels keep
> shifting - you can start off with one, and decide another fits better.
>
> I suppose I was wondering if you weren't having "parent of child with
> marginal disability" burnout - where your motives, judgement, competence,
> are so often challenged if you're rash enough to tell anyone of the
> "diagnosis". that you become wary of 'coming out'.
>
> Judy
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