Milan again? March 18, 2008
Posted by Mike Gulliver in Uncategorized.Tags: Clause 14, DEAF, Deaf Studies, Disability, Disability Studies, Genetics, Government, HFAE Bill
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.
Chapter one nearly done March 1, 2007
Posted by Mike Gulliver in Uncategorized.Tags: BSL, Campaigning, DEAF, Disability, Government, PhD
2 comments
It’s dragging on… but the end of chapter one is in sight. I had a meeting with my two new geography supervisors, Yvonne Whelan and Robert Mayhew on Tuesday and agreed a way forward for the PhD. I need to submit the first draft of the first chapter to them by next Friday… which is good as it’s beginning to go a bit stale… but working on it at home has been a lot more productive and it’s gradually getting there. With good health and a fair wind, things will now speed up and I will be able to advance a lot less sporadically than before.
So that’s one piece of news. Another is that I received a response from the office of the Prime Minister concerning the recent petition asking the PM to introduce the teaching of BSL in all schools. The wording of the petition was not altogether serious and, in an attempt to make it relevant to a hearing government, portrayed sign language as a more ‘funky’ alternative to spoken language to be used when there’s lots of noise about…
In the midst of this, the slightly offhand “Of course it would also make life easier for people who rely on sign language as their primary mode of non-written communication” didn’t seem to have a great deal of impact on the government despite over 5000 signatures.
However, the biggest problem with this is not that they rejected the request. After all, 5000 people out of 60 million is not a great majority. It’s the background assumptions and the tone of the response that is so hard to swallow.
So, for your pleasure, here is the response from number 10 with my response to their response inserted (note: I have tried to be as positive as possible. Faced with a goverment that is so two-faced that it turns my stomach it’s been hard, but I hope I’ve succeeded… maybe).
“We recognise the tremendous value of British Sign Language (BSL) in helping hard of hearing pupils throughout their educational careers.
OK, straight down to the nitty gritty. Come out and admit it. You still don’t really believe that BSL is a language do you? You still see it as a tool for broken hearing people. Do you want to see how this reads this through Deaf eyes? OK… try this:
“We recognise the tremendous value of Welsh and Gaelic in helping non-English pupils through their educational careers.” Patronising and insulting it’s it?
For a government that recognised BSL as a language in March 2003, you’re doing a pretty good job of misrepresenting it now. Gosh, any moment now someone will come out with the BSL-braille comparison and then we’ll be in serious trouble.
The National Curriculum, however, has been developed carefully over the years to provide young people with an entitlement to the essential knowledge and skills that will equip them for success in further education or training and in the world of work.
You know, thank you for this, it’s the first time that I actually realised that the National Curriculum was not about preparing children for life; only education and work. No wonder we’re in such a mess.
It is important that the National Curriculum should offer a broad and balanced education, but we must avoid over-prescription of what is taught and leave sufficient time and space for schools to personalise their offer to address individual needs and aptitudes.
No problem with that.
The balance we now have is the result of extensive consultation and trialling
Did your ‘extensive consultation’ involve any contact with the Deaf community. No. I didn’t think so.
but it is not fixed for all time and we will continue to monitor and review curriculum content at intervals to ensure that it still meets the needs of all young people.
Would it be useful to teach them a language that not only offers the possibility for international communication but enshrines a different way of thinking and a culture and history that is utterly unique in all of humanity and raises fundamental questions about the way that knowledge is constructed in Western society? Oh, that’s a shame, it’s the kind of thing I’d have found particularly valuable at school.
The secondary National Curriculum is currently being reviewed in order to reduce prescription still further and to create more freedom for teachers to use their professional judgement in designing subject curricula. Across the whole of our 14-19 reform agenda we are developing further opportunities for young people to exercise choice about what they study and how, with the introduction of diplomas, apprenticeships and so on. In this context, we do not feel it would be appropriate to introduce a new statutory requirement to teach British Sign Language in all schools.
Oh right, so the National ‘Curriculum’ is about to become less of a curriculum and more a loose gathering of subjects. In which case, there’s plenty of room in there for BSL, particularly as it’s actually far more immediately useful to most people in today’s society than… say… algebra. AND… you could teach it from a very early age so that it doesn’t even figure in the secondary National Curriculum. After all, you wouldn’t expect to start teaching kids to speak at the age of 11 would you? (oh, I forgot about other modern languages. Well, perhaps that’s why we’re bloody awful at those too)
It is also worth noting that the National Curriculum does not represent all the teaching that goes on in schools. Teachers are free to introduce other experiences and subjects if they wish to do so, as long as they are also meeting the statutory requirements of the National Curriculum.
Great!
The SEN and Disability Act, which was introduced in September 2002, means that more disabled children are now learning in mainstream schools, where that is what their parents want.
Hang on, we’re back to the Deaf=disabled issue again. No. That’s not what we’re arguing. BSL is a language. Deaf are a linguistic minority. Anyway, we’re not arguing about what to teach Deaf children here, we’re talking about teaching hearing children BSL.
This means that schools are developing a greater understanding of the needs of disabled people and in some schools this may well lead to teachers deciding to offer sign language to help ensure a child with a hearing impairment is fully included in school life.
Well, it’s nice to see you finally admit that 1. Deaf children are not fully included in school life, 2. This is a linguistic issue, and 3. That the problem would go away if you taught all hearing children in the school BSL. Oh. But you’ve said you’re not going to do that. (oh and PLEASE stop calling them children with a ‘hearing impairment’, unless you want them to refer to you as someone with a ‘sign impairment’)
In conclusion therefore, it is right that schools should have the opportunity to teach BSL but we would not wish to specify that it must be taught to all pupils. We believe rather that this should remain a matter for schools to decide in view of their own local, and possibly more pressing, needs.”
Ah… and there’s the crux of it. Schools have more pressing needs than to try and teach their pupils about difference, equality and otherness and adequately ensure the integration of some 70,000 signing members of British Society.
Well, that’s OK. The schools are probably just following your example.