Tuesday, March 11, 2008

Designing Disability.

A deaf couple who wanted to use IVF to ensure that they have a deaf baby are angry that the government is proposing to ban the knowing use of embryos with a genetic defect in IVF treatment. This isn't the first time that a deaf couple have deliberately tried to ensure that their child is also deaf. The reason why it is deaf couples trying to propagate their disability rather than couple's with another disability is because uniquely the deafness creates a linguistic minority and a subculture that goes with it.

The problem is that some deaf advocates take the view that because deafness is a cultural identifier it is therefore not really a disability. This leads to situations such as opposition to treating deaf children with cochlear implants because it shrinks the 'community' or doctors failing to offer easy genetic screening for deafness (ironic considering the first story I linked to) in foetuses because of pressure from deafness advocates.

I would guess that the initial reaction for most people to parents 'designing' their children for deafness is probably that it is abhorrent and close to child abuse, that was certainly my first reaction. Considering the matter in more depth certainly creates more sympathy towards the motivations of the parents but it doesn't change the conclusion. The absence of hearing impairs the quality of life of a child and increases the risks they face ( for example they can't hear fire alarms, oncoming traffic etc) and the benefits to the deaf community don't outweigh them.

6 comments:

JuliaM said...

"The problem is that some deaf advocates take the view that because deafness is a cultural identifier it is therefore not really a disability."

There are, unbelievably, still people who belive the Earth is flat.

We don't give them a say on life-enhancing medical procedures, though..

"Considering the matter in more depth certainly creates more sympathy towards the motivations of the parents.."

Really...? Why so?

Ross said...

Well because part of the reason they want a deaf child is so that their child is someone who speaks the same language as them, which is a normal desire. As I say, I don't think that that desire can override the disadvantages that deafness will cause the child but to them it isn't the equivalent of blind parents deliberately creating a blind child.

Umbongo said...

John Humphrys remarked appositely (well broken clocks and all that) when he said to the deaf nutter in question (Tomato Lichy if the Telegraph got his name right) that a child could learn signing and enjoy thereby full membership of the deaf community and all its benefits despite having the "disability" of being able to hear: he - the nutter - could not learn to hear. Lichy had no answer to that and sought - unconvincingly - to bring God into the discussion.

JuliaM said...

"Well because part of the reason they want a deaf child is so that their child is someone who speaks the same language as them, which is a normal desire."

It's a normal desire to want a child that has your eye, your hair colour, or you voice. It is most certainly NOT a normal desire to want your child to be born disabled, just so it will look and behave like you.

"...to them it isn't the equivalent of blind parents deliberately creating a blind child."

And yet, strictly speaking, it IS. I wonder why we don't ever see blind activists demanding it?

This couple (Tomato..? Ye Gods!) are simply selfish, bigoted and narcissistic. Being deaf is the least of their disabilities.

I've been joining in over at CiF on this (http://www.guardian.co.uk/commentisfree/2008/mar/11/disability), and the attitudes of some of the 'deaf activists' is frankly nothing short of deranged.

"Lichy had no answer to that and sought - unconvincingly - to bring God into the discussion."

God...? They want IVF! If they believe so strongly in Gods will, they should leave it up to nature..

Ross said...

Umbongo, John Humphries point does seem the most sensible comprimise.

Julia, I can't get that CiF link to work.

JuliaM said...

Ah, sorry, it seems to have chopped the end off! It's an article by Cathy Heffernan, it should be findable by author.