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DISABILITY-RESEARCH  March 2004

DISABILITY-RESEARCH March 2004

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Subject:

Re: Thank You

From:

Sara Ryan <[log in to unmask]>

Reply-To:

[log in to unmask]

Date:

Thu, 25 Mar 2004 11:57:51 GB

Content-Type:

text/plain

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Parts/Attachments

text/plain (182 lines)

Hi,
I like the sound of your ideal parent although it seems to be
based on an ideal (therefore unattainable) world.
Here are a few thoughts about some of your questions;

> that I am ignoring the changes, often initially negative, that
accompany the introduction of a child with a disability into a
family; >

I think the possible initial negative changes result largely
from poorly handled interactions between parents and
professionals (which the research at Sheffield is focusing
upon), compounded by the negative reactions from others, such as
extended family members, friends, colleagues etc (pretty much
everyone!)
I think this is a transitory phase which could be helped along
the way by a number of different things such as better
information, less need for battling with services etc but which
is often replaced by very positive changes to the family (again
dependent on the appropriate support for that family).
The key thing is that the post-negative positive phase is
limited to the family because it doesn't matter how much I feel
we are just a family with a number of lively, demanding, diverse
members, to other people (including extended family members)we
are the family with the retarded/disabled/special
needs/handicapped/bless him/slow learner/not all
there/autistic/learning disabled son who goes to 'ill school'.

>that many people can be outstanding parents to a child without
an impairment but not satisfactory for someone who has an
impairment >

I'm not sure what the argument is here - that it takes a special
parent to bring up a disabled child? Or should it be a disabled
parent?  Nobody chooses their parents and vice versa (although I
suspect my daughter wishes she had her best friend's mum.) What
makes an outstanding parent and who is deciding?

> thus,the parents should be able to figure out in advance what
they can handle if they have the choice, and should be able to
avoid what they can't; >

Wow - if only!  I might have a couple of returns though who I
would send back changes on a daily basis.

> the parent who uses testing and abortion to avoid a child with
a disability in advance will work out fine if a nondisabled
child becomes impaired, because when that happens, the parent
will already have a relationship with and an investment in the
child that will override distress at the impairment.

Rubbish!! This is again is a terrible argument which probably
shouldn't warrant a response. So I won't.

Hope this makes sense,
Sara








> Thank you to everyone who suggested references for my question
on family
> > life and quality of life.  I knew some of them, but you all
provided me a
> > great bibliography of things to track down.  Every time I
post to this
> list
> > and get the kinds of responses I do, I know how valuable
this list is and
> > thank everyone who created it and who stays on it.
> >
> > I want to mention an early book on family and disability
that still stands
> > out to me as exemplary, that by Rosalind Benjamin Darling,
_Families
> Against
> > Society_.  Although I have not reread it in several years, I
remember it
> > with great respect and appreciation as a book full of
recognition of how
> > parents came to value their children with disabilities,
despite the
> initial
> > apprehensions and the frequently difficult communications
with
> > professionals.
> >
> > I would also be interested in any on- or off-list responses
to the
> > following:  I am arguing that the ideal parent, the one we
might like the
> > society to aspire to, is a parent who imagines that she or
he can lovingly
> > embrace and respect any child, with or without an
impairment, that all
> > parents of any child will need to recognize strengths and
deficits,
> > disappointments as well as joys, in their child and their
parent-child
> > relationship.  Given this idea, prenatal diagnosis followed
by selective
> > abortion, or preimplantation genetic diagnosis, perpetuates
the idea that
> > only certain kinds of children will work within families,
will work for
> > parents; although parents should be able to make decisions
about which
> > children they will parent, what they feel their desires are,
the society,
> > the professionals, and the parents should imagine that
living with
> > disability is as legitimate, as gratifying, as any other way
to live;
> > disability is only one facet of a person, and it need not be
the deciding
> > factor in which child can be gratifying to a parent.  It is
a bit
> difficult
> > to put a long argument into a paragraph, and so I risk
oversimplifying
> > myself and my ideas, but my question for the list is this:
My critics
> argue
> > against these ideas in a couple of ways, that I am
minimizing the hardship
> > of disability given an inhospitable society; , or if you
will impairment, can
> > never be reduced entirely to a socially constructed
characteristic such as
> > sex; and
> that
>  Responses to any of this from anyone?
> > (For longer, perhaps overly long, presentations of some of
these ideas,
> you
> > can read by article "Prenatal Diagnosis and Selective
Abortion:  A
> Challenge
> > to Practice and Policy," in the _American Journal of Public
Health_,
> > November, 1999; or you can see my efforts to reply to
critics in my
> article
> > "Why I Haven't Changed My Mind about Prenatal Diagnosis and
Selective
> > Abortion," in Parens and Asch, _Prenatal Testing and
Disability Rights_,
> > Georgetown University Press.
> >
> > I keep thinking I am done with this topic, but there is more
to explain,
> so
> > I keep at it.
> > Any help, support, challenges, will be valued.
> > Sincerely,
> > Adrienne
> > Adrienne Asch
> >
>
> ________________End of message______________________
>
> Archives and tools for the Disability-Research Discussion List
> are now located at:
>
> www.jiscmail.ac.uk/lists/disability-research.html
>
> You can JOIN or LEAVE the list from this web page.
>

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