deaf genetics

a personal perspective on paddy’s deafhood class on genetics

Before heading to the SIGN4 conference in India I took part in Paddy Ladd’s Deafhood class, where the topic was on genetics.  The key of the lecture was to explore the discourses around genetics and Deaf people with the events over the HFE Bill still quite recent.

The discussion ranged from how the discourse of genetics is generated and formulated by the media and the ways in which agencies and politicians percieve and construct Deaf people in relation to genetics issues.  The influences of past discourse is also evident, for example in the case of the couple in the USA who sought a Deaf donor to improve their chances of conceiving a deaf baby. Their impact on lay people was also explored. Critically, any discourse that challenges or contradicts the dominant was sought and found. Such discourse is a minority view, but nevertheless these represent critical evidence of how the hegemonic view is challenged. Where does that arise from, or how does it come about? There is particular interest in the way it happens and how it is communicated and to what audience.

Discussion moved on to the genetics campaign itself – specifically stop eugenics – the people involved, their political campaign, the approach they took and whether it had any impact or success. The impact was massive: the media coverage by radio, newspapers, journals, television, is probably the most widepsread coverage of any ‘Deaf issue’ in the UK.

In respect of the sense it obtained such coverage, success is probably not the correct word because it didn’t lead the scrapping of the clause although the explanatory clause was changed to remove references to deaf donors, but impact would appear a more appropriate one. It momentarily entered the consciousness of a wide range of laypeople who, had they read or heard the debates on radio, considered their own emotions and beliefs as well as those of Deaf people.

One of the most important debates from my point of view was the political nature of the campaign itself.  Stop Eugenics was meant to be non-hieracrhical; although a small group of people took the initiative in starting up the website, the media and political campaign, there was no formal committee as such, the activists did not seek to create a committee or organisation, but was very much a ‘do it yourself’ group.  People were constantly encouraged to become involved in ways that catered for what they could contribute to such a campaign: creative video’s, posters, taking part in media interviews. A separate group set up a march. Stop Eugenics wasn’t a formal organisation, but it was set up to campaign for the scrapping of Clause 14/4/9.

Yes, it could have become a formal organisation, but did not crystalise into one for a various number of reasons: that is a shame, but the ‘do it yourself’ nature of the organisation didn’t, nevertheless, stop identified individuals becoming identified with the campaign as it’s spokespeople. 

In single issues campaigns such as that of Stop Eugenics where a small number of people are active, a momentum is created, and if they use intense energy and effort to sustain they will eventually burn out. Some did suggest it became an organisational type of movement so it could have become, for example, a kind of FDP; however, there were some very positive things that did come from it, such as the national and international attention and cyber-gathering.

Here is where Deafhood could explore wider political activist movements, since it will find that all radical political movements that react and are formed largely in defence are ultimately limited: i.e. it isn’t unique to Deaf activism. All active campaigns rely on small cadres to keep the momentum going.

If you have a much larger number of active people (I mean thousands, not scores as in, for example, the FDP) what you will get is not reform, but revolution.  People are freed up to be active on a wide range of front’s that will test the established order to breaking point. You can see the parallels with so many different movements.

It was an extremely interesting class, and the debate continues. In a small way, I thought the Stop Eugenics movement brought to life Deafhood in very real sense: i.e. that Deaf people are not going to be guinea pigs in any legislation that wishes to bring small steps to their eradication. Politicians and the media may well have assumed they had quite a straightforward argument, but Deaf people who became involved indicated that isn’t quite the case. There are a large group of Deaf citizens who are happy to be Deaf and not dead.

The message made was that it is positive to be Deaf; Deaf people have much to offer and contribute to humanity; and the future of the Deaf world through sign language and Deaf culture has positive benefits to bring to humankind.

More Deafhood classes please! 🙂

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Update: education, diaspora, genetics and group rights

An incredibly hectic period! It’s always busy, but these last three months have been a workload tsunami to beat all workload tsunamis!

Here’s an update.

Struggling with swine flu back in August, I wrote up an ‘Expression of Interest’ for a Centre for Deaf Studies project to evaluate the work being undertaken by the I-Sign Consortium. The consortium received £800,000 from the Department of Children, Schools and Families to undertake a pilot project into increasing BSL in education and within families. We are evaluating that project. Just beat the deadline by 4 minutes. CDS will soon begin the process of evaluation, using Theory of Change and Distance Travelled methods.

It promises to be a challenge, and we wait with interest to see how the project itself progresses in the next 15-18 months.

Secondly, I’ve been working with colleagues to look at the possibility of undertaking research on the concept of Sign Language Peoples Diaspora.  A lot of ground covered, but hope to have something published soon on our thinking around the concept of Diaspora. It’s totally early days for that.

Finally, the group rights research is slowly progressing. This coming Saturday I fly out to India to the SIGN4 Conference, where I am giving a paper on group rights. It’s entitled ‘Putting the World to Rights: Group Rights and Deaf Communities’.

In addition to having been internal assessor of a PhD for the second time, chaired and hosted a UK Deaf Academics meeting at Bristol, and undertaken some teaching on ‘Learning Skills’ on the MSc Deafhood course and other typical university-type work stuff.

Research I was involved with around genetics: Anna Middleton has published the work we did, including a DVD from the workshop in Cardiff last year.  There are two published articles in ‘Sign Language Studies’ forthcoming, all joint-authored, one of which includes a summary of media reporting of the movement opposing the HFE Bill. That is in the next issue of SLS.

No rest for the wicked!

Enjoy the festive break.