Thanks Judy,

there is an old saying that friends come and go, but enemies are forever.

Adapting this to our lives: therapists and social workers come and go, only
write their phone numbers in the teledex in pencil, but
parents/families/carers are here forever, or until they drop dead (whatever
happens first) When the chips are down we are their advocates, their
strength, and life support; day in year out. We are also a vastly exploited
resource, inhibited from fighting back dirty because we love our children,
and are apalled by the idea of making spectacle out of what is a tragedy.

I now have forever offended those who celebrate thevirtue of being disabled,

rgds John

-----Original Message-----
From: Judy Singer <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: 15 July, 1999 10:19
Subject: Social Constructionist Fairytales (was Re: Re: Parents & stress)

>To John,
>Thanks for your "Trilogy" - looks like you make some important points
>(have only glossed so far)
>I also want to commend you for coming out and saying earlier that if you
>had know what you know now - abortion wd have  been an option.
>To the Rest,
>I have to take issue with Laurence Bathurst' research - can't help
>thinking that he's come to his data with a strong need to prove that
>everything unpleasant in life is merely a social construct - to me this
>is a fairytale - it requires a notion of infants born in some kind of
>essential "Original Perfection" - as absurd as the doctrine of "Original
>Sin" that it's partially attempting to replace. Extreme social
>constructionism is a kind of variant of a "Just World" fantasy that we
>know always leads to disaster when adherents attempt to act on it -
>either wishing to blame the victim, or at least "re-educate" them.
>I speak as the parent of a child with Asperger's Syndrome, (often
>thought of as Autism with normal to high intelligence), the daughter of
>a mother with the same, and some traits myself, though to a much more
>disguisable extent.  So what I have to say draws only on my experience
>of this "disability".
>My experience of the feelings of parents of children with AS is an
>irreducible ambivalence - which I cannot imagine being solved even if
>there were sensitively trained social workers trooping through the house
>from dawn to dusk. Our kids are adorable and maddening at the same
>time - and they suffer too, yes, *suffer*! because they're highly
>intelligent, and yet they can't seem to do the things they reach for and
>they don't understand why. Their/our extreme sensitivity makes them/us
>constantly subject to anxiety and overload. Adult autistics don't
>minimise these difficulties - yes, a lot needs to be done to make
>society more aware - but there will always be these issues, there will
>always be tensions and mutual irritation between autistics and
>I view any "research' which attempts in any way to tame or reduce the
>full emotional range that humans are capable of to something comfortable
>and manageable and reassuring with suspicion.  Some of the research I
>read reminds me of money laundering. When you look for where the
>substance is, all you find is an incomprehensible paper trail of more
>and more obscure definitions of definitions - "roles" and "identities"
>and "loss of self" - what the hell does this mean - until you're so
>caught up in the fight over definitions that you completely and
>conveniently forget the original question.
>And I'm sorry Laurence, because this is hitting below the belt, but it
>needs to be said. When men who don't have children research mothers -
>they better be very careful not to fall into all kinds of foucauldian
>error - "constructing themselves as 'subjects' and improving their
>social status" at the expense of those who are in no position to
>research them straight back.
>Any mother will tell you that people who've never had children will just
>never know the full range of pain and pleasure that the world has to
>offer. All the more so when the child is outside the tried and tested
>developmental pathways. I'm sorry that when it comes to disabilities,
>parents often seem to be pitted against children, but when the sun goes
>down- they're the ones who are left to raise the child, not a nameless
>cohort of disability activists with an answer for everything.
>Judy Singer