Posted by peter bracken in Culture.
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Lest this question be deemed odd, I point you in the direction of an interview on Radio 4 yesterday morning when a deaf man (who wishes to have a deaf child) argued that government plans to make it illegal to use embryos with a genetic abnormality in IVF treatment, when ones without the same defect are available, amounted to discrimination.
I have added the emphasis to make it clear that the choice being denied the man is deafness in his child when a hearing child could be conceived instead. His argument is twofold, one aspect more valid than the other but both horribly misguided.
The pathetic strand of the argument is that a deformed embryo is an expression of God’s will, and who are we to deny it? Well, where does God’s will stop and our responsibility to act start? Was the Holocaust God’s will? Nuff said.
The more credible strand of his position is that deafness is not a disability at all, that it enjoys a unique and sophisticated form of communication and triggers access to a thriving and rich community of deaf people. I don’t doubt the latter points, and would also concede that the ability of deaf people to cope well in a world that functions largely with hearing people in mind suggests that the ‘problem’ of deafness can be over egged.
But - and I think that this is the crucial point - only a deaf person could choose a deaf embryo over a hearing one, because it is only they who are ignorant of the blessings of hearing. I can imagine deafness in a way that it is inconceivable for the deaf to imagine what it is like to hear. There are too many things for them to imagine. What is the sound of water? What is the sound of an orchestra? What is the sound of frying bacon? More prosaically, what is the sound of a fire or smoke alarm, or a crying baby?
The loss of any of our senses results in a lack. We evolved them in their entirety for a reason. And though modern life protects us from the gravest consequences of losing one (or more) of them, it is only the afflicted who, tellingly, might wish it on others.
The government is right to deny them.
peter bracken
It worries me that the discriminatory foundations of this Bill have been glossed over in much of this debate. This policy clearly states that a child without a ’serious illness’ must be automatically preferred to a one that does have one (or indeed, a risk of developing one). This is clear discrimination and implies that a Deaf life is one not worth living. If this legislation is passed a precedent of statutory interpretation will have been established – that deafness is indeed a ‘serious illness’. In future what other ‘conditions’ may be eradicated in this way? This medical conception of deafness is a narrow-minded denial of the richness and value of Deaf culture and community.
Deaf persons have many unique qualities to offer the rest of the world – can many hearing people claim to be able to attend an international conference and be able to communicate with any person of any nationality? Deaf persons can through adapting their beautiful and flexible language. Far from being isolated and lonely individuals, each Deaf person may become a member of a vast global community if they wish to do so.
Clause 14 should be recognised for what it is – yet another thinly veiled attempt to eradicate Deaf persons, motivated by economics. The brave parents at the heart of this debate are not seeking to ‘engineer’ a ‘designer baby’. The embryo is deaf, it already exists. They are simply saying that they would deeply love and cherish a child that others may see as disabled. What is so very terrible about that?
I’ve never found questions like this easy to answer becxause there are so many conflicting interests, such as freedom of choice of the parents, however the situation is unnatural to begin with and whilst it not an easy decision to make, I ultimately come to the conclusion that it would be unfair to knowingly bring a disabled child into the world, when the option of having an able bodied child who will be able to enjoy all life has to offer in its fullness is available.