The pressures of being a ‘tweener’

At home, we’re currently watching the T.V. series ‘Prison Break’. One of the key characters is David ‘tweener’ Apolskis. Caught somewhere in allegiance between the prisoners and the police he never appears quite sure who he should side with to best ensure his future… does he follow his heart and ally himself with the cons? Or take the more pragmatic step of cooperating with the police?

Having just passed my PhD viva, but without any immediately secure research destination, I know a little bit how he feels. During my Masters and PhD, I did everything I could to ensure that there would be research work waiting for me when I finished. However, despite volunteering, lecturing, tutoring, supervising and publishing my way through the last seven years, I’ve come out virtually empty handed.

In truth, I’m not surprised. There are few academic departments in the UK (world) working with Deaf studies at anything higher than undergrad level… so it’s largely a case of dead-man’s-shoes. However, even when there are dead men, the shoes are taken away by recruitment freezes. Add to this the distinct possibility of a drop in equality and social science funding brought about by a conservative win at the elections next year, and the complete failure of academia in general to perceive the enormous importance of Deaf Studies as a test bed for re-writing theory on what constitutes ‘valid humanity’… future pickings look thin.

However, I can’t stray too far. If I do, I’ll never publish, never win a grant, never get back in. With my heart in academia but no option but to find work elsewhere, I’ve become a ‘tweener’.

My working life has become a strange combination of two different worlds. Four days a week (approx) I work as an administrator and computer help-desker for the ILRT at the University of Bristol. Two days a week I spend working for the Centre for Deaf Studies as a temporary researcher. Work to write academic papers, grant proposals, make contact with potential funding sources and research collaborators etc. vies with phone-enquiries and spreadsheets… I have completely different CVs, two e-mail signatures, two professional personas…

I’m being supported at every turn. The ILRT have been enormously flexible in allowing me to drop my hours to do additional research work. CDS have bent over backwards to find me ways to be involved. However, it’s clear that my ‘tweener’ status makes satisfying both quite difficult. I’ve been told, for example, that in order to get funding and get through the ‘research door’ more permanently, I need to publish more and put in grant applications… but the one thing that I’m not prepared to sacrifice for this is my family… so when do I write them?

I guess it’s good training in being a ruthlessly efficient administrator for when I finally do get a lectureship… but it seems to be a gap in an academic career progression that is not often talked about by those who have successfully navigated their way through it…

Viva voce

Interesting that although it’s called ‘viva voce’ [live voice] (and I admit that I did choose to speak), my viva was conducted in both speech and sign…  It makes me wonder whether we should look further down the list of definitions for voice… have a look at http://dictionary.reference.com/browse/voice for example… numbers 1-5 are typical, but these are more interesting.

6 – something likened to speech as conveying impressions to the mind

8 – the right to present and receive consideration of one’s desires or opinions

It’s rather like the re-work of ’silence’ that I did a few years ago, where I defined silence not as a lack of sound, but as a lack of information presented in a form that can be perceived… ‘captured’… it’s interesting how well this links into Amartya Sen’s work on ‘Cap-abilities’… but that’s a post for another day.

Anyway, the viva went well… I’d like to thank Steve Emery and Mike Heffernan for the opportunity to discuss something that I’m passionate about for a whole three hours…  I am now Dr Gulliver (I’ve been reliably informed that I have the right to use it as soon as the decision is announced… and it’s proved to be remarkably useful in getting Mortgage Advisers  to take us seriously even though we have more-than-fragile incomes) and I begin the slow process of finding a full-time, long-term research position… not easy for a wide variety of reasons.

I’m currently working as a computer help-desker, with some additional research work at the Centre for Deaf Studies.

At the moment, a tenured lectureship seems a loooong way off.

A new academic’s quandry

Post submission, I’m in a bit of a quandry.

Essentially, the problem lies in how to disseminate the material that I’ve written for the PhD, in particular, how best to explore the concept of DEAF space. There’s a basic tension.

In the world of academia, it’s not a good idea to start talking about something that you’ve formulated unless you know that you’ve got ownership of the concept… ie: that you’ve published something peer reviewed (etc.) that explains it and that people will refer back to as the ‘first paper’ on the subject, you’ve got recognition from your academic peers for your work and so on…

However, not only is DEAF space not simply an academic concept, it’s not my academic concept, but one that belongs to the DEAF community. It’s an attempt to describe the very real, everyday life experience of DEAF people all over the world. So I don’t want to hold onto it and pretend that it’s mine, mine, mine… it’s not.

If there is a concept that’s mine… it’s probably the concept of a geography of (cap)ability… but even that’s a combination of several other people’s work… Lefebvre’s, Rob Imrie’s, Amartya Sen and Martha Nussbaum, Ben Bahan amongst others with a good dose of Paddy Ladd and others in there too…

So, on the one hand, for my academic future, I need to publish before really being able to openly exploring… And, on the other hand, I want to get the information out there as soon as I can so that DEAF people can start using it, thinking about it, taking ownership of it… and then I can work with them to explore it better and understand what it means to them.

Publishing for academic purposes is not an easy task… particularly since what you’re aiming to do is get as many papers out there as possible on different aspects of the concept. There’s no point writing one paper that skims the entire thing and having nothing left. So, ideally, you want to carve up the thesis and publish lots of detailed, but discrete papers.

However, that’s exactly what you want to avoid when you’re providing a guide for those who either want to start at a more basic level, or who aren’t (yet) interested in the theoretical academic background…

So, for better or worse, what I’m going to do is to blog bits and pieces up here at the same time as writing academic papers and also try to get as much of it out there in BSL as I can too…

Ideally I’m looking for a place to host a website without all the marketing that comes with freesites… anyone have space they can spare?

The long-distance writer

To my shame, I’ve not read it, but my friend and colleague Steve Emery has published a paper on the challenges of the “long-distance post-graduate student” Emery (2007) see here. My guess is that he found similar things to me… besides the challenges of trying to get what you need from an unfamiliar library with a limited borrowing allowance (thank goodness for electronic journals, that’s all I can say), the biggest issues for me are simply keeping in touch with an understanding of the level of writing that the PhD expects and getting responses from people fast enough.

About a month before Easter I was well on the way to getting the first drafts for everything in… I’d written all the first drafts of the data chapters, had them checked, and I was about to go onto the theory… the idea was to get that in by easter, have a few days off, and then get on with the editing…

Then one supervisor went on study leave, and the other came back from study leave, requesting that I get all the editing done before they looked at the chapters.

Not a problem… after all, it’s all got to be done at some point… the only thing is that out of contact with others doing the same thing, and out of touch with the most recent trends in your field (it’s just inevitable if you’re 150 miles from the office and you can’t go in more than once a month!) every time you send a revised chapter, there’s that horrible moment of waiting for an acknowledgement, and then the comments, and then the realisation of what more needs to be done…and the feeling that you’re slowly drifting away from the target, whilst the deadline looms ever closer.

And all the time there is a feeling that my writing is not as good as the stuff that I’m reading… and no reassurance that that’s OK because I’m still only a PhD student…

So now it’s past Easter, and all the revised data chapters are in… but I’m no closer to knowing if they’re gooed enough… and the theory still has to be written…

web presence

Sure, it’s probably therapeutic to write… maybe for its own sake, but what is the point, really, if no-one is going to read it.

Having transfered attentions to a blogspot blog for the last few weeks, searching for myself on the web (only prompted, I assure you, by the fact that I was told that other people were looking for me) I found that the blogspot blog didn’t register with google at all… consequently, despite the fact that I still can’t work out how to change the password on this one so that I can remember it, I’ll be coming back here.

The point of having a blog, after all, is to use it and be seen using it… surely!

Just about submitted the second revisions of all four data chapters… there’s some real meat in their, hopefully I’ll take the time to outline some of it at a later date.

Only the theory to go now *gulp* and only a couple of months to get it written, polished and handed in.

Be glad when it’s over now

P.S… Have changed the password… phew!! How complicated is the dashboard on this thing?

Hmm

Yes, well… that commitment to keep this updated didn’t last long now did it!!

Still… quick note… more information and a paper uploaded to my profile on academia.edu site. The paper is pretty basic, a re-examination of Milan through a more spatial lens, but for those who haven’t read anything that I’ve written, it’s a start.

Second data chapter going to review today, so on to the third on Monday… article to review for Deaf Worlds later today and some fascinating thoughts on the distinction between deaf, Deaf and DEAF from a friend of mine at Bristol which I hope we we will be able to publish when we’ve had a chance to chew it through some more.

Also check out Annelies’ blog on her work on Ghana at naarengelandvaren.blogspot.com

Happy weekend.

Beginning again… again

Having finally finished with moving, holidays and faced with Jo’s departure to work at Nottingham Hospital… I’m back to work on the PhD… and endeavouring to keep this blog updated on a more regular basis…

Whether the aim of writing more often will actually come to anything is another question entirely… but since I have a blog, I ought to at least write something in it!

The first day or two back will be taken up with admin… there is a summer’s worth of e-mail to clear and a few household tasks that need to be sorted out… but as soon as that is done then I have two papers to write to present at the upcoming ‘Signs of God’ conference… I’ll publish them here once they’re done.

Watch this space… no-one will be more surprised than me if I actually do manage to get something consistent written here!

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.

The lie of ‘of course deaf is wrong’

Regarding Hilary Freeman’s article in the Daily Mail, I have had two notes from Deaf people saying that their comments in the Mail and the Times have been suppressed… yes… not all of my comments have been published either… they reserve the right to do that… handy isn’t it?

However, anyone with access to the original Mail article (does anyone know if they have to keep them on file?) will see that the present incarnation has been substantially altered and wording changed, particularly where they make factual errors or misrepresent people who have then been prepared to threaten them with legal action.

What Freeman’s article now appears to be in a more personal account of her experience growing up with a deaf younger brother. It’s a typical story of family grief and environmental adaptation, ad-hoc interpretation and coping with hearing-centred conformism, of linguistic and pathological confusion and frustration… It’s such a world away from the kind of interactive, loving and accepting upbringing that Tomato and Paula will be giving their daughter that it infuriates me to see comments on some of the sites condemning them for being terrible parents… How can a Deaf person be a terrible parent when the love and nurture their children, and hearing people be good parents when they force their deaf children to struggle to communicate even within their own family?

So, all I would say to Freeman now is… you’re not alone… Sadly your story reflects the experiences of thousands of those who have deaf children, deaf siblings or who are deaf… and who have been told right from the outset that ‘deaf’ is wrong and curable, and that only ‘hearing’ is acceptable. Unfortunately, this is a lie… and a damaging one because of the way that it attributes the success or failure of the transition from deaf to hearing to the child’s own efforts and the efforts of their family, and heaps condemnation upon those who don’t succeed in becoming sufficiently hearing.

Note: I’m not denying here that physical deafness is the lack of a physical sense… and I’m not denying that the hearing world is built around sound-based language… and so I’m not denying that those who either cannot hear or who cannot speak are disabled in their interactions with the hearing world by hearing society itself… Rather, I’m arguing that this does not directly attribute disability to the person themselves… why should “all five senses” be in working order before classifying that person as whole?

Why not, instead, accept Deaf people’s natural orientation as visual people and their authoring of natural visual sign languages and celebrate the amazing potential for human diversity that this demonstrates. Why not work to broaden humanity rather than limit it by setting up a straw man of hearing-based disability and then knocking it down by eradication of the ‘deaf gene’. Why not look at what this does to the limits between disability and ‘hearing’ and ‘Deaf’ as cultural constructs rather than inherently physical categories…

If journalists are to do their jobs, they must overcome their own personal angst and engage with both (multiple) sides of the story. Read accounts of people who have been through the same struggles both Deaf and hearing. Contact the British Deaf Association and NOT the RNID (the latter also have to represent the views of hard of hearing people who grew up in the hearing world and so can’t exclusively represent Deaf people). Contact Deaf academics Dr Steve Emery and Dr Paddy Ladd. Contact Tomato and Paula directly. Contact specific university departments who work investigating Deaf knowledges. Contact Deaf community activists; the people at www.stopeugenics.org, those at www.grumpyoldeafies.com. Consult Deaf-owned blogs currently commenting on the same area. feel free to ask me too if it’ll help, but I’m not Deaf and I’ll only point you those who are).

Listen to what they say, wrestle with the diversity of Deaf opinion, think about it, digest it, understand it… and then tell people about it… but don’t simply discount it as wrong or invalid.

For a more balanced approach from someone who more appreciates the Deaf side of the story more, look at the Independent’s Dominic Lawson here.

A plea to the press on Clause 14 (HFAE Bill)

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?