Dear Anna,
I was thinking more in terms of adult children who have a disability that
does not involve learning difficulties. There are many voluntary support
groups where the majority of management are non affected parents. They
often see the issues in different ways to adults with the impairment. There
is often a lack of representation because young adults may be reluctant to
get involved with the group and take on leadership roles.
I don't believe parents of adults with learning difficulties are
necessarily 'control freaks' as you put it.
Rosemary
At 04:53 PM 10/05/2001 +0930, you wrote:
>As for parents pushing their agenda for their adult children who have an
>intellectual disability - yes I know it happens a lot but some of us are
>able to be self aware and realise that we do this and try not to.
>
>Its hard to provide all the information necessary for informed choice to be
>made and to provide support without removing power or influencing choice.
>The other thing is that if our adult children do make the wrong choices, the
>onus to fix things often falls back onto us, in the form of increased
>social, emotional and financial support.
>
>I push for structural change that can allow better access to society
>generally and better mechanisms for gaining power and a voice instead of
>trying to run my daughter's life. She still wants me to organise and
>advocate for her at times though, when alternative support systems are not
>available. The other consideration is that the policy process and other
>forms of governance do not accommodate people with an intellectual
>disability to have their own voice.
>
>regards
>Anna (not all parents are control freaks) Williamson
>
>
>----- Original Message -----
>From: "Rosemary Pynor" <[log in to unmask]>
>To: <[log in to unmask]>
>Sent: Thursday, May 10, 2001 3:38 PM
>Subject: Re: Source search - Is the disability movement unrepresentative of
>the majority?
>
> > Dear Harriet,
> >
> > Just as others act as advocates for people with intellectual disabilities,
> > a lot of support groups are made up of parents of kids with disabilities.
> > The parents often seem to have agendas that are at complete odds with
> > adults with the disability. Parents in groups I have been involved with
> > often continue to push their agendas for their children over the age of
>18.
> > I remember one father who was very keen for his son's wife to be
>prenatally
> > tested for a genetic disorder the son had. The son did not seem so
> > concerned but father had a very strong personality.
> >
> > Rosemary
> >
> > At 08:45 AM 09/05/2001 +1000, you wrote:
> > >Dear Harriet,
> > >
> > >I am not sure if I have said this but am sure it could have been me!
> > >
> > >People who claim to speak for others often present opinion as fact. Also
>a
> > >person with experience of one type of disability has no more credibility
> > >when speaking for people with different disabilities than a non disabled
> > >person.
> > >
> > >People with intellectual disabilities are vastly under represented, and
> > >mostly rely on representation through family and carers. Much the same
> > >applies to people with mental disorders.
> > >
> > >Advocacy bodies and particularly 'peakbodies', usually funded by
> > >government have a problem convincing us that they are independent, and
> > >will bite the hand that feeds them without fear nor favour.
> >
> > =================================================
> > Rosemary Pynor
> > School of Behavioural & Community Health Sciences
> > University of Sydney
> > PO Box 170 LIDCOMBE NSW 1825
> > AUSTRALIA
> > 61 2 9351 9598 (ph)
> > 61 2 9351 9540 (fax)
> >
> > ________________End of message______________________
> >
> > Archives and tools for the Disability-Research Discussion List
> > are now located at:
> >
> > www.jiscmail.ac.uk/lists/disability-research.html
> >
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=================================================
Rosemary Pynor
School of Behavioural & Community Health Sciences
University of Sydney
PO Box 170 LIDCOMBE NSW 1825
AUSTRALIA
61 2 9351 9598 (ph)
61 2 9351 9540 (fax)
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