Parents Demand Right to Screen and Select FOR Genetic Deafness in UK

Jackie Ballard of the Royal National Institute for Deaf and Hard of Hearing People in the United Kingdom is pushing for the right of parents to intentionally create a child with hereditary deafness.

"Jackie Ballard, a former Liberal Democrat MP, says that although the vast majority of deaf parents would want a child who has normal hearing, a small minority of couples would prefer to create a child who is effectively disabled, to fit in better with the family lifestyle."

"A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist."

I am neither deaf nor hard of hearing, and do not pretend to understand what it would be like to exist in a world without sound. I enjoy music, don't much like the sound of my own voice, and find the clacking of my hedgehog's wheel in the middle of the night very calming. I enjoy the tick-tick of my fingers on the keyboard as I type a blog post, and it would surely startle me if people could walk up behind me without the sound of footsteps to give them away. However, does that mean that my life has more intrinsic value than the life of a deaf or hard of hearing person?

This puts me in mind of a blog post by Deafmom, in which she describes the deafness that runs in her family and the long, slow process by which her family discovered its cause.

"It turns out that we have a rare gene that is passed on through the females in our family. A gene so rare at this point that only two other families in the world have been identified."

"On one hand, it is quite interesting to have some information about this gene and how it travels through the generations. There's a name for it, a way to explain to others what's happening in our family.

On the other hand, it opens us up to information that is sometimes better off left alone."

The article in the Sunday Times goes on to explore the arguments for the right to select FOR deafness:

"There are a small minority of activists who say that there is a cultural identity in being born deaf and that we should not destroy that cultural identity by preventing children from being born deaf.”

A small minority of activists? Again, I am not deaf, but I would say that the majority of people who ARE deaf or hard of hearing who describe themselves as activists would agree with this statement. Would the eugenics supporters in the UK who would like the measure prohibiting the selection of a deaf embryo like the world to lose the skill of sign language? It's hard to learn to sign when you can hear quite well- I know, I've tried, and all I managed to pick up was a few insults!

Deafmom mentioned in the comments on the above blog post that her daughter has a great perspective on being hard of hearing, and that she does not think her daughter will mind knowing that she is very likely to have deaf or hard of hearing children.

Shouldn't the decision of whether or not to eliminate deafness from the family's gene pool, if given the choice, be left to people who have experienced deafness as a part of their personality, self, identity, and culture, and who have examined the choice fully- rather than to lawmakers, who, like me, can't imagine being deaf?

Aborting Severely Handicapped Fetuses in Britain

Some news from across the pond:

http://www.inclusiondaily.com/archives/07/12/11/121107ukbioethics.htm

"The country's Abortion Act of 1990 allows a pregnancy to be terminated at any time if two doctors agree there is a "substantial risk" of the baby being born with a 'serious handicap'.
What is considered a "serious handicap", however, is left up to the doctors to decide."

"For instance, pregnancy records released in October showed that a total of 156 babies with Down syndrome were born between 2002 and 2005 in the southwest portion of England. During the same period, doctors performed 194 abortions based on Down syndrome diagnoses in the same area.... Statistics released from that Anomaly Register for the Southwest also showed that 54 fetuses diagnosed with club feet, 26 with 'extra' or 'webbed' fingers or toes, and 37 with cleft lip or palate, were aborted during the same time period."

So, it's true, is it? Discrimination begins in the womb for children with disabilities. I'm not exactly surprised. I remember vividly when, as a young teen, I 'babysat,' a term that seems insulting when I look back on it, a woman older than myself who had cognitive and developmental disabilities. She communicated with some sign language and occasionally verbally, but required significant care. I was exhausted after only a few hours of keeping track of her- highly mobile, she ran faster than I did, and I found the fact that she wore adult diapers disturbing. What fourteen year old really wants to be told that she may have to change the diaper of a twenty-something? I wondered how her parents managed, and discussed the issue with my mother.

She responded, "I don't know."

I pressed further: "But Mom, what if I had been born with disabilities like that?"

My mother replied, "Then I hope I would have found out before you were born and in time to have an abortion."

I was shocked. I'd been expecting a motherly response, assurances that she would love me just as much, that she would have learned to cope; pretty much the polar opposite of the response I got.

Reading this article brought back the memories of my reaction to hearing those honest words from my mother. Can anyone decide, by the time a fetus is old enough to know if it will be born with a disability, if it is better off not being born at all?

"In November of 2006, the Royal College of Obstetricians and Gynaecologists suggested that the deliberate killing of babies with disabilities should be considered as a treatment option. The RCOG suggested in a Sunday Times of London article that 'active euthanasia' should be considered for the overall good of families, and to keep parents from the emotional and economic hardship of raising a child with disabilities."

As opposed to euthanasia after birth, I suppose abortion would be preferable; especially for the unfortunate medical professionals tasked with performing the hypothetical euthanasia. What would it do to a person to actually, physically kill a post-birth infant? Probably about the same thing it does to people to kill puppies when animal shelters are overcrowded- "Shelter worker burnout," it's called, and it's the reason both for high turnover in animal shelters and for frequent incidences of neglect in shelters. Are we really heading toward a world where hospital employees have to worry about "dead baby burnout?"

It's easy to react viscerally to these images, but when I think on it over and over again, I come to the same conclusion. There are only two ways to resolve this debate without endorsing discrimination on the basis of disability from the moment of conception onward. The first is to prohibit all abortions after a certain point- perhaps the point at which the fetus would be able to survive outside the womb without extraordinary medical assistance. The second is to allow abortion at any time during pregnancy, and to leave the decision to the pregnant woman, while ensuring that resources supporting adoption and other options are readily available.

Making exceptions to abortion law on the basis of disabilities suggests to women pregnant with a disabled child that perhaps it doesn't deserve to live. It discourages them from seeking out the perspectives of women raising children with severe disabilities and hearing the voices that say, "Yes, you can, I did!" The statistics kept on abortions due to disability encourage the 'everybody's doing it' mentality, and turn the choice to abort or not abort when a fetus is diagnosed with a disability into a poll or popularity contest, rather than the intimately personal and heart-wrenching decision it is for every individual faced with that pre-natal diagnosis.