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?