‘Disabled’ or ‘with disabilities’ September 26, 2011
Posted by Mike Gulliver in Musings.Tags: Disability, disabled, discourse, enabling, human rights, UN
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I recently overheard someone saying that it’s no longer ‘correct’ to talk about ‘Disabled people’. Apparently, the UN and other international organizations use ”people with disabilities” instead.
It makes me think that we’ve slipped back to the 1960s again. (more…)
Milan again? March 18, 2008
Posted by Mike Gulliver in Uncategorized.Tags: Clause 14, DEAF, Deaf Studies, Disability, Disability Studies, Genetics, Government, HFAE Bill
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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.Tags: BSL, Campaigning, Clause 14, DEAF, Disability, Eugenics, Genetics, HFAE Bill, Press
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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.Tags: BSL, Campaigning, Clause 14, DEAF, Disability, Eugenics, Feminism, Genetics, HFAE Bill, Sign Language
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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.
Chapter one nearly done March 1, 2007
Posted by Mike Gulliver in Uncategorized.Tags: BSL, Campaigning, DEAF, Disability, Government, PhD
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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.
Day um… 18th January January 18, 2007
Posted by Mike Gulliver in Uncategorized.Tags: DEAF, Deafhood, Disability, Essentalism, PhD
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So much for no-one reading… my brother Stephen has been on here and commented that he’s reading… he’s a lecturer at Brunel in Information Systems and Computing with a particular interest in perceptual media and eye tracking (which Jo is very excited about)
Second, this blogging malarkey actually works! Following the advice of Sam and David (see days one to three!) I contacted the Chronicle regarding the article by Lennard Davis that I mentioned last week and told them I’d blogged it… And they wrote back… And I replied… And then they wrote back again, and so did Lennard Davis… And so we started a little discussion about what he’d written and what I’d written which was very fruitful. I’m sure he won’t mind me putting a quote on here.
“Perhaps the difference has to do with a US vs. UK perspective. The UK’s scenario has always been one that was more about the continuities between disabilities and the way that the environment disables people. In the US there has been a very different genealogy in which Disability has been seen as a free-standing identity and the idea was to develop pride around a disability identity.”
I think this is perhaps something we’d both agree on, although I did point out to him that whilst this is the stance of a lot of disability theorists, most Deaf theory here doesn’t talk about Deaf people being disabled by their environment nearly as much as it talks about them as a linguistic and culture minority. If you want a good example of this see Ladd, Batterbury and Gulliver (forthcoming) in Environment and Planning D: Society and Space, which should be out later this year.
In fact, geographical researchers on disability here are moving away from the environmental model in which disability is an impairment, to take it on as one of an infinite range of physical othernesses. Interestingly, this could perhaps even pave the way for a return to considering Deaf people within a continuum of disability identities without squashing the question of their linguistic and ontological otherness, although I find it hard to reconcile this kind of constructivist take on identity with the evidence that Deaf people still feel it necessary to construct themselves as linguistic others, and assert their right to own BSL and all contexts in which it is used (Gulliver 2004).
But, it’s the UK versus US aspect that interested me with particular reference to Deafhood, which I’d assumed had had some impact within the US Deaf community as far as I could tell from internet and rumours within the academic community. It turns out that it’s not as mainstream as it perhaps appears. So what does Deafhood, with its explicit rejection of Deaf as in any way impaired, look like within a disability politics model as opposed to one that is, as it is in Europe, primarily based on identity and ethnicity?
It makes me wonder if instead of seeing the Deaf community as a single global unit with a single voice and then worrying about the political direction that they are taking, we should instead be charting questions of representation, audience and becoming; Who is it that represents the Deaf community and how did they get to be where they are? Who’s listening to them, from where and with what aim? What evolutions are happening within the Deaf community? Where are they coming from?
Davis is certainly one voice, Paddy Ladd is another, the BDA in the UK are another, IRIS in France are another, the Deaf person in the street are a mutliplicity of others… and the span of the diversity is enormous (as are the number of visions of the ideal society of/with d/Deaf in and out). It will be fascinating to see how Deafhood plays itself out in this forum.
BTW – the PhD is advancing, and the supervisor question is being slowly resolved. However, I’d like to be writing faster than I am… keep plugging away.
—
Gulliver, M. (2004) – BSL Ours. Thesis submitted for the MSc in Deaf Studies at the Univeristy of Bristol. UK.
Day 4 – and I finally started typing January 12, 2007
Posted by Mike Gulliver in Musings.Tags: Blog, DEAF, Deafhood, Disability, Essentalism, Gallaudet, Musings, PhD
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Where was day three you ask? Am I getting tired of blogging already?
Ok… so I think an essential element of keeping yourself interested in blogging, unless you’re totally self-obsessed, is having people read your blog… as far as I know, no-one’s reading this yet, which makes it harder to write. I guess, if i were only using this as a forum for publication and dissemination then that would be OK as it’s then up to an audience to read it or not but if you’re looking to develop links with other interested parties, be aware that it’s not going to happen overnight.
Also, blogging is fine as an activity but it does take time out of the day and the last thing I want to do sometimes is sit here and type in an entry when I need to get on writing the PhD. I guess one key is not to feel guilty if you don’t enter something every day and only to type when you have something more to add. Anyone tracking this with RSS would be mighty cheesed off to find that there was nothing but drivel being added on a daily basis. Better, I think, to wait and add something of value.
These are not criticisms, simply comments, and things to bear in mind when you decide to use a blog as a publication method.
Ok… well, yesterday, having submitted the plan to my prospective supervisor (who hasn’t replied yet. Perhaps the debate that i’ve been having with Jo about people’s e-mail etiquette can wait for another day), I actually started typing yesterday. 500 words on the emergence of the small Deaf community around Etienne de Fay in the Abbaye de St-Jean in Amiens. Much of that might go into an appendix but it all needs typing, so I don’t regret the time. Today I plan to push on with that and get up to the Desloges examples.
Other than that, most of my thinking attention has been take up by an article by Lennard J. Davis sent to me by David Brake http://blog.org and forwarded by Sam http://www.samkinsley.com/ concerning the recent Deaf protests at Gallaudet. The article can be found here: http://chronicle.com/temp/reprint.php?id=j1kwykr398gz88fxgrdp8tj6n7wldcny
You can read the article for yourself but in case you want a summary, Davis is responding to the recent high profile Deaf mobilisation over the leadership of Gallaudet university which he sees as based on a short-sighted backlash from the Deaf community over the failure of Jane K. Fernandes to fit the architypal Deaf ‘mould’. He argues that although Deaf people have suceeded in re-defining themselves away from the disability model and towards a model of linguistic and cultural community identity, this move is fundamentally flawed by being based on essentialised aspects of identity which flounder in what he calls a ‘new age of post-identity’.
He says: “I am arguing that defining the deaf or any other social group in terms of ethnicity, minority status, and nationhood (including “deaf world” and “deaf culture”) is outdated, outmoded, imprecise, and strategically risky”
The article is well written, but unfortunately the clearest message it gives for someone reading from within the academic Deaf studies community is that whilst Davis is clearly passionate about the dangers of essentialised identities, he sadly appears to have missed recent evolutions within the Deaf community that are embracing a becoming-processural ‘Deafhood’ and leaving the fixity of previous models behind.
Now, I’m not going to go into the definition of Deafhood here, particularly as it has no one definition and will continue to be defined and re-defined by generations of Deaf people for years to come. You can see my meagre first attempt on wikipedia here (if a Deaf person would like to take over and add more that would be great?) . A much fuller exploration is available here in ASL video or in the book by Paddy Ladd which started it all off. There will also be a Deafhood site going live soon at www.deafhood.com. In some ways, it is an idea that is already showing flavours of geographical diversity as American Deaf take it one way and European Deaf go another. This isn’t a problem and actually mirrors what happened (and is still happening) with other movements like Feminism, Postcolonialism, Black or other racially based-studies, Nationalisms… the list could go on.
And it is this inherent diversity that is so visible within Deafhood that suggests that Davis’ concern over the political foundations of the recent Gallaudet protest is perhaps more influenced by his background within disability studies (which, incidently, is also being transformed by alternate considerations of physical Otherness into a ‘becoming’) than it is by real observation of the facts. The key to the Gallaudet protests was not the enforcement of an essentialised identity. Rather, it was based on exactly the kind of self-questioning, reflexive movement that Davis is looking for. It’s a shame he appears to have missed it.
