HFEB Heads Humanity Towards a Black Hole???
this blog started out as a comment to Shane Feldman’s blog posting and responses on DeafDC.com but my own comment went way to long so I’ve made it a blog entry here…
to me the case of the U.S. couple seeking out a sperm donor with a strong dominant gene for “deafness” is not the same thing as what the Deaf brits r facing with the HFEB. i do understand that the clause 14(4)(9) is a direct result of fear as a result of this case but they really r apple and oranges as far as genetic engineering and screening goes (see Stop Eugenics Now for more details)
the HFEB’s clause (as i understand it) will mandate that if any - deaf, Deaf, hard of hearing, hearing, bald, lesbian, heterosexual, over 40… ANY person needs IVF and the eggs and sperm that hook up invitro show a possibility of deafness - that one is to be TOSSED
it may even be interpreted to mean that a person who might have a strong likelihood of having a Deaf gene - not be allowed to use her/his egg/sperm
so as i understand this bill - it is not only designed to stop those “CRAZY” folks who might want to actively try to CREATE a Deaf baby from doing so but it will stop ANYONE who rolls the dice and ends up with any potential ABNORMALITY - TOSS, DO NOT INSERT, AND DO NOT PASS GO. INSTEAD GO BACK AND SCREEN UNTIL U GET THE NORMAL GAMETE / EMBRYO, CHOSEN ONE, DESIRABLE OFFSPRING
THEN INSERT AND EAT SALTINES AND DRINK GINGERALE AND HOPE FOR THE BEST
ive got issues with this because im just a wee bit suspicious of the medical industry and how they view “disabled,” “diseased,” and “abnormal” (deficit thinking often rules)
i had been offered an aminocentisis when pregnant with my son - “what for?” i asked. they said “oh just so u can make sure the baby is fine.” i was aware the procedure is normally used to screen for Down Syndrome for the explicit purpose of giving the woman the choice to abort the ASSUMEDLY unwanted child due to such a significant “defect”
i pressed onward - “what do you mean make sure the baby is fine.” “what if the baby is not fine? then what?”
shifting on her feet “well, then you have choices.”
“meaning what?” i asked
“well then you can make an informed decision”
“im not following u”
blank stare with a plea - dont make me say it in the eyes
“we are talking about abortion are we not?” i ask.
“yes, this is the choice” she replies
I say “no thank you”
end of discussion
pls know that while I would not choose an abortion for myself, i support the right to legalized abortions for women who desire one relating to their rights and their bodies
the reason why i share this example is because to me it exemplifies how quick the medical profession is at offering us “solutions” - using technology (prenatal) to do away with a fetus not because the woman can not bear the fetus emotionally, economically, or physically but because the fetus is “imperfect”
here i am not making light of the significance of Down Syndrome - i know with the developmental disability comes many other very significant health complications - one of which is heart problems and often leads to a very early death. I also realize this is heart breaking and devastating to the family
yet of all the families I know whom have a family member with DS - not one of them regrets it or wishes the child was never created
so for me the issue is not i oppose HFEB because im pro-life
it is rather i oppose it because who is to determine which life is worthy of being allowed to be created PRE - implanting. this decision is largely put into the hands of legislators and the medical profession - this takes the reproductive rights out of the hands of the individual / couple seeking a child
that choice is entirely different than someone actively trying to increase their chances of having a child with green eyes or a high IQ or a passion for music or a gene for being Deaf or to avoid a Deaf gene by selecting a sperm donor (via love and marriage or interviewing friends or looking through the sperm bank book). that is simply trying to increase ones chances that the baby will have the traits one admire and desire vs. actively combining and tossing until one hit the “right” composition
the latter is more brave new worldish
i myself would never actively seek out such an option but i can understand why some might
HFEB is ending or prohibiting the potential of life due to it being “undesirable” because it is “abnormal”
the uproar over the lesbian couple is a telling tale because it shows us just how profoundly the majority culture views “deafness” as an affliction
when my students read about the “case” years ago they were more actively engaged in discussing if two women - i.e. Lesbians - should be making babies. The Deaf gene was not an issue for them - it was like duh - big deal. But two lesbians…wow hmmmm - that caused a stir. today they are far less unsettled by the knowledge that lesbians make babies and can be awesome moms but when the story first broke for many of them that was the surprising and questionable factor and not the Deaf angle at all (this is the “different center” padden and humphries wrote about in their “Deaf in America: Voices from a Culture”)
today they have more exposure to gay and lesbian rights and “what is normal”
unfortunately the majority culture still views Deaf people as something really tragic and unfortunately there are not many images in the media (film, tv, etc) to help normalize what it means to be Deaf
re: cost
the Nazis waged a very strong and successful campaign against the disabled with their Law for the Prevention of Hereditary Diseased Offsprings (one of the first laws Hitler signed into action in 1933) based on the costs “unfit” and “useless eaters” cause to society in terms of medical care and social services. Estimates of up to 350,000 disabled people were forcibly sterilized. If genetic screening had been available - u can bet their dream of an Aryan race would have been much more productive.
The danger with any government legislating who can and can not be allowed to be created is that the social darwinism spectrum leap from preventing unfit life to actively murdering living and breathing children and adults is not a terribly big one (6 millions Jews, millions of others (disabled, Jehovah witnesses, gays/lesbians, Romi, Catholics, communists, etc)
If the HFEB passes - it has implications for more than just the U.K and more than just Deaf people
it has serious implications for humanity
it means that the world may never see another Stephen Hawkings or Ella Mae Lentz or Chris Burke or the Mayes family etc
While Stephen Hawking has contributed infinitely to our understanding of the universe, matehmatics, and black holes, if ALS (Lou Gehrig’s Disease) is definitively linked to genetics, would any potential future individual with ALS be prohibited from being created under the British Human Fertilization and Embyrologoy Bill?
the argument of the COSTS / DEBT that disabled folks incur society is one that so saddens me. it is the argument the Nazis successfully used to lobby support for their sterlization campaign
it is more expensive to be a woman in this society, it is more expensive to be a black person in this society, it is more expensive to be a latino in this society
this is not an argument to do away with such individuals but rather an incentive to rectify any injustices and inequalities experienced by members of these groups
“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
let us not allow the HFEB to head humanity towards a black hole
take a stand for that which is right, which is just, which is true by signing the STOP Eugenics Now press release / petition opposing clause (14)(4)(9) - link gives background information links and how to get your name added
let us U.S. Deaf culture folks show our support for our brothers and sisters (born and yet to be created) in the U.K.
peace
patti durr
sorry to blog this and not vlog - camera still on the blinks
