Milan again?

Looking through the media coverage of the HFAE bill, have you noticed how much it mirrors the debates of the congress of Milan in 1880? In fact, it’s revealing how many of the assumptions undergirding the current proposal are the same… and frustrating that little impact seems to be made by challenging them.

Clause 14 (4) (9)

“Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality
involving a significant risk that a person with the abnormality will have or develop –
(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,
must not be preferred to those that are not known to have such an abnormality.”

That appears fairly clear to me. If you define deafness as a serious physical disability, and you can identity its cause within the genome as an abnormality… then those persons or embryos identified as having those genes or combinations of genes, will be excluded by law from donating eggs or sperm, and/or disregarded as viable embryos before implantation.

But it leaves me with more questions than answers.

1. Academic… What constitutes a serious disability? Where are its origins? What of D/deaf people’s well charted difficulty in locating themselves within a binary disabled/non-disabled model? What about disability studies’ location of the responsibility for dis-abling in the environment and society? What about Deaf people’s cultural/linguistic model? How about previous assumptions concerning the inherent inadequacy of Black people, Jews or Women? What about hearing people in Deaf-authored spaces?

2. Moral… Why does this Bill have a ‘corrective’ ingredient? How is it formulated? Who’s version of ‘better’ humanity is preferred? What happens as our morals change evolve in the future? Who gives the right to intervene to prevent an ‘abnormality’ being passed on?

3. Scientific… Can we guarantee the knowledge that we have on genetics? Do we know for certain that disabilities will result from specific genes or gene combinations? Does that information really inform our knowledge of who and what is ‘happier’ or ‘better’ or is ‘health’ just a question of genetic Sudoku played with no moral ingredient?

4. Legal… How does this stack up against human rights legislation? What facilities are there for legal challenge and accountability? Where does this sit within current abortion debates? (or those concerning differing ages for disabled births?)

5. Social… Do you stop here, or do you eradicate the ‘addiction gene’, or the ‘obesity gene’ or the ‘gay gene’, or (in our warming world) the ‘fair-skinned gene’? In a country where, last week, a girl was beaten to death because she looked different, what does this clause say about welcoming diversity and the disposability of those who are ‘other’? Will we see Deaf people travelling abroad to find reproductive freedom?

6. Epistemological… What about Deaf people’s take? What does their reality (realities) look like? Why is that being ignored? Why are Deaf people being subjectified into bodies by rather than empowered as people? Why is Deaf well-being being ignored?

All of these are serious areas that arise from this one clause, and all are areas that are shut down at a stroke by those who refuse the debate.

The HFAE bill threatens to destroy more than just embryos that it judges invalid… it threatens to destroy the ability to hear what Deaf people have to say.