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> 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; that I am ignoring the
changes,
> often initially negative, that accompany the introduction of a child with
a
> disability into a family; that disability, or if you will impairment, can
> never be reduced entirely to a socially constructed characteristic such as
> sex; that many people can be outstanding parents to a child without an
> impairment but not satisfactory for someone who has an impairment and
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; and
that
> 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.  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
>

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