The History of Disability

[Lawrence]

Just an anecdote I'd like to insert, perhaps slightly off topic: my close
friend Wendy is a nurse who works in labor and delivery. She hears of some
of the cases that fall apart, that is, the ones that go to pre-natal
intensive care. She feels that many times the parents are simply not given
enough information to make anything like intelligent decisions regarding
their babies future health. This is especially true of poor/uneducated
parents. There are obvious intellectual/cultural barriers between the
doctors and the parents, especially the poor ones, and not many doctors work
actively to get passed all that. Wendy told me of a case recently where a
woman had triplets, and she went into labor very early, in the 5th month.
All the children had defects of one kind or another. One of the children,
the most seriously ill, had no real chance for a normal life. The artery to
its liver had a defect, most of its liver had not developed or had already
died. The baby had severe jaundice, it was a bright yellow. The yellow is
caused by bilirubin, which the liver should remove from the bloodstream but
in this cas was unable to. The extremely high levels of bilirubin were
causing brain damage. The doctors told the mother they'd like to do surgery
on the child. What they wanted to do was reshape the artery to give the
liver an adequate blood supply. Then the liver could grow. Even this would
not give the child anything like a normal life, but it would improve what
life it had. When the surgery was explained to the mother the mother said no
to it, "I don't want him to have a big scar across his chest because if he
does then the kids will pick on him when he's in school." The doctors either
failed to tell the mother or failed to make her understand that the child
had little chance of living till school age and, even if they were lucky,
would be too brain damaged to attend normal school. The surgery was not
done, the child remained an intense yellow, the parents, with their 3
children, including the bright yellow one, were discharged. Essentially, the
infant was sent home to die. A month later it was back in the hospital.

----- Original Message -----
From: "Marta Russell" <ap888 at lafn.org>
To: <lbo-talk at lists.panix.com>
Sent: Wednesday, July 25, 2001 2:41 PM
Subject: Re: The History of Disability


> Leo --
> I don't believe that women are informed - the way that policy is
> discussed and implemented around prenatal testing shows considerable
> ignorance about impairment and disability.   There is not an equal
> playing field because society is biased and prone to dispose of
> impaired persons.  This is a major part of the oppression, so though a
> woman has the potential to make informed choice she often is not
> making it as fully informed individual.  Her (or anyone's decisions)
> are conditioned by medical professionals and the society. Hence
> selective abortion for disability is dominant.  Blind, deaf, mobility
> impaired, missing a limb, these are all undesirable in the medicalized
> view of disability.   Rather still, the question is why is the
> impaired body so unwanted?  My short email answer is because we are
> devalued as workers, excluded from the means of making a livilihood in
> this capitalist economy which "disables" those with significant
> impairments.  I have already written at length about this in several
> papers.  I would highly recommend that you read Michael oliver
> "Understanding Disability: from Theory to Practice" (1996 St. Martin's
Press).
> Yes, I do draw a line -- at conditions that would result in death in a
> short time, say two to three years.
> As for the genetic screening angle -- shall we get rid of all the
> invisible disabilities, that is the fetus which may develop prostate
> cancer at age 50-60?  You see the absurdity of tinkering with this.
>
> Marta