May 1, 2009

My Blighted Life... BADD Contribution 2009

As we step into the brave new world of the 21st century, some notions from the 20th century still linger. One of those notions, eugenics, has to do with the "self direction of human evolution".

A common comment I hear from within our community comes in the form of a question: Can you inherit epilepsy?


Until recently, I had not fitted the pieces of
the puzzle for this question together. When one
asks if the source of E. is hereditary, what one
seems to really be asking is whether or not it can
be "caught" by one's progeny from a parent.

If one considers the question more deeply,
one can begin to see a connection between the medical model
and fundamental eugenics philosophy: in each case, it is the disabled individual who is the problem and it is her
disability we are anxious to cure. Either by medicalized re-mediation or via genetic exclusion. Something they feel needs to be redirected or reshaped for a better future, I suppose.

Rather than seeing society as placing obstacles in the path of the disabled' participation and inclusion,
those who still hang on to these outmoded explanations continue to segregate all of society into an
us versus them reality.

Many of us are at least vaguely aware of Professor Singer, the Australian professor who has come close to equating
disabled children with the concept of the "useless eater". Singer's support for euthanizing disabled babies could lead to disabled older children and adults being valued less as well. When Peter Singer attempted to speak during a lecture at Saarbrucken he was interrupted by a group of protesters including advocates for the handicapped.

He offered the protesters the opportunity to explain why he should not be allowed to speak. The protesters indicated that they believed he was opposed to all rights for the handicapped. They were unaware that, although he believed that some lives were so blighted from the beginning that their parents may decide their lives are not worth living; in other cases, once the decision is made to keep them alive, everything that could be done to improve the quality of their life should, to Singer's mind, be done.

So is this the same thing as feeling an intrinsic value for all human beings or is Dr. Singer thinking of a social redirection??
Yet, via Singer's utilitarian approach, he does seem to leave open the door to the possibility that
society can and should look to the future and make every effort to reshape that future.

But what do we do about the ordinary folks who have a distinct fear of our numbers increasing?
Take for example the case of the mother in Britain who wanted her daughter's sex organs removed to prevent
her going through the discomfort of menstruation--- I don't believe this to be the real "interest". What I believe, no matter
how immaterial, is that the mother had grown more and more anxious over the notion of unwanted pregnancy than
anything else...
A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.

Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.

But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."

Andy Rickell, executive director of disability charity Scope, told the Press Association: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.

"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.

"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."

How do we feel about disabled sex and reproduction? As a society, there are those who have strong feelings against disabled sex and reproduction. I know as a woman with E., I was warned all my life that I would never be able to have children and that I should never have children.

To my mind, the warning could have been more distinctly articulated: something more like: don't have children unless you can care for them, unless you are married or have employment or the like. The same kinds of warnings parents make to their non disabled kids.

Certainly, I have taken this piece a little far afield, but I guess my point is still a simple one: I am happy to be alive and I don't want to be engineered out of existence, by anyone.

If the day ever comes when someone wants to know whether to let me die "with dignity" or continue living my "blighted life", what I "would want for myself" is to be left alive--- I must say that I am, under no circumstances, in favor of euthanasia, nor would I ever sign a DNR for myself. Too many people have been too anxious for too long to get rid of us to ever let me see "mercy killing" as an option.

I plan to live to be at least 112 years of age, blight and all.



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