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Milan again? March 18, 2008

Posted by Mike Gulliver in Uncategorized.
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2 comments

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.

A plea to the press on Clause 14 (HFAE Bill) March 12, 2008

Posted by Mike Gulliver in Uncategorized.
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I know it sells papers… gets ratings… draws crowds… and there’s nothing better than a bloodfest to get the juices flowing… but this (highlights added)

Concepts of equality and parental choice sit uneasily when the result means deliberately creating a baby with a disability…” (Moral Maze)

and this

Unlike the couple who are currently fighting for the right to ensure they have a deaf child through IVF… ” (Daily Mail)

Is plain mis-representation.

The question is not a case of preferring a deaf embryo over a hearing one… It is simply a case of NOT aborting a fetus that is deaf, deselecting a gamete that might be deaf, or rejecting a donor who might carry a ‘deaf gene’.

Dear press… Can you not see the debate is not about Deaf people engineering-in deafness, but about those with some kind of authority based in public acceptance and submission deciding to reject human beings based solely on their ability to hear and on the disadvantages that they might inevitably ‘suffer’ living in a society that has consummately failed to understand them.

Dear press… you have been sucked in… and you’re playing their game… and you’re lending them the support upon which their fragile authority continues to thrive.

For 200 years and more, Deaf people have been fighting to try and explain themselves to those same authorities who have single-mindedly refused to allow Deaf people to present their point of view without being talked-over, interpreted, re-presented or explained away.

And now, as we watch, it is happening all over again… rather than entertain a challenge to what is considered normal, healthy, whole… and perhaps discover themselves prejudiced, bigoted and less than the liberals that they would wish to be they would rather silence opposition to their control of what is considered ‘normal’ by eradicating them at their point of origin (ironically, to save them from a terrible disability)… or silencing them and not allowing them to speak.

Please don’t play their game by granting them the moral high ground… please join in forcing them to explain themselves.

Who is it really playing God?

Response to John Humphries March 11, 2008

Posted by Mike Gulliver in Uncategorized.
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8 comments

I’ve been spurred back to writing by yesterday’s response to the Human Fertilisation and Embryology Bill by Tomato Lichy and Paula Garfield on Radios 2 and 4… and particularly by the responses from John Humphries who demonstrates perfectly the cross-purposes at which people are arguing.

The issue of Clause 14 is hotly debated elsewhere and I don’t want to add my voice to the mêlée… Rather, I’d like to suggest that the problem be considered on a different level… one that unfortunately gets swamped by the (very real) necessity for urgent political action, the lack of time available to opponents of a process that moves quickly and the pressure to achieve an end goal… but one that, in my view, warrants a move from the entire academic community to prevent an initiative that threatens to destroy our access to knowledges that differ from those of the temporarily approved set of ‘Truth’.

Humphries’ responses in the Radio 4 exchange with Tomato clearly demonstrate the problem. He cannot perceive of deafness being anything other than a disability… and sign language, or sign language-mediated knowledges, being anything other than a compensatory system for those who cannot hear… consequently, his perception of what might be the ‘right choice’ is limited to the one that appears ethnically inevitable.

Consequently, as Tomato (and Paula too in the exchange with Jeremy Vine) assert Deaf culture and language, the non-disablement of Deaf people, the dis-abling of hearing people in Deaf spaces and so on… it makes no impact on Humphries’ single-minded assumption that there is only one reality… his own.

I don’t want to argue epistemologies or ontologies etc. head on. It has no impact on people who are that stuck inside one knowledge system. So let’s start a different way, by embarking on a ‘make believe’.

In 2003, the British Government finally accepted the linguistic evidence that BSL is a language in its own right (note: they did not accept BSL as an official language of the UK, nor did the government in its entirely participate in the validation, only the department of work and pensions did… and only within the remit of disability provision… so there is a whole lot more work to do yet). By so doing, they accepted that BSL (and therefore other natural sign languages, that’s another debate) is fully able to mediate human linguistic and cognitive development.

Let’s dial back then to the point in time where humankind developed language. What if, at that point, instead of adopting speech, they had adopted the perfectly viable alternative: sign language. There’s evidence that some might have done, and indeed nothing within the language to stop it from happening, and there’s nothing inherent within the decision to make it any less viable or likely than the current status quo.

And it’s here that the problem lies. If we accept that this is a possible scenario (and we must given the evidence) then the ‘only-ness’ of the world in which we live is challenged. If it is entirely possible that the world might have developed based on sign language-mediated intervention, then neither spoken-language culture and society nor sign-mediated culture and society is inherently ‘better’ than the other… simply different… equally validly ‘other’… complimentary… distinctive of human creativity… maybe even prone to different creative expressions and holistic mediations of what it means to be ‘human’…

And this is what Deaf people argue. They do not merely equate their sign language with deafness. Presented not only as a language through which Deaf people find their full humanity, but as a full, other form of communication that embodies the body/world relationship far more holistically than does linear spoken language, Deaf people have suggested that their ‘other’ knowledges are a compliment to the hearing-authored world.

OK… I know there is the reality of history and the current situation to consider (but most of that is a ridiculous worry about Deaf people not being able to hear traffic and suchlike), and I know that the political situation of the Deaf community has made it less than easy to extricate emotion, argument, anger, resentment, reactionism and so on. But what would happen if instead of seeing this debate as one in which Deaf people are (mistakenly) accused of trying to deliberately disable their future children, we flipped the debate on its head and looked at the issue of Clause 14 as symbolic of ways of exploring and celebrating the variety of what we consider fully ‘human’ instead of attempting to wield a 200 year-old, paternalistic, scientifically-informed scalpel to distinguish between those considered valid and those who are not.

Not so long ago Black people were also considered inferior… and so were gay people… and so were Jews… and so were women… And yet by embracing their knowledges, knowledge itself has been transformed… How much more than could Deaf people bring to the sum of human knowledge if they were allowed to express themselves without immediate prejudice.

It is time, now, to embrace the challenge of Deaf people’s physical, cultural, perceptual, linguistic, ontological otherness.

All the eradication of Deaf people and Deaf knowledges achieves is the impoverishment of humanity as a whole.

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