Action on Hearing Loss (AoHL): supporting eugenics?

So the latest annual report of AoHL is out! This report, like many, may not excite people and I may risk coming across as something of a nerd to subject it to analysis, but I have my reasons.

 

A question I asked on reading it was: is AoHL strengthening its eugenics tendencies?

 

The reason for making a strong statement is due to their recent merger with Deafness Research UK, or DRUK. This group had many previous names, one being ‘Defeating Deafness’. Like AoHL, they’ve changed their name: RNID – Really Not Interested in the Deaf; Defeating Deafness, no explanation required, because of the negative connotations of the previous ones. And have now re-branded into a package that covers up some of their practices all the while implying that they exist for the common good of people with a hearing loss.

 

To quantify some of my accusations I refer to the words of the report, which make no attempt to hide the fact they are eager to support what they call the ‘hearing community’:

 

We award biomedical research grants to fund world-class research projects that will accelerate the development of medical treatments to prevent hearing loss, restore hearing and alleviate tinnitus. We also make grants to increase the numbers of trained research staff, build future research capacity and support small-scale activities that will strengthen the hearing research community. (p.21)

 

Small scale the activities they may be, but the report makes great play of the merger:

 

[DRUK’s] core purpose was the encouragement and support of hearing research, achieving this through the provision of grants for high-quality, UK based hearing research. We have a long-term commitment to funding hearing research as a part of our organisational strategy, and the merger will enable us to work together to invest more in hearing research. (p.25)

 

Hearing this, hearing that, hearing the other. Perhaps, when they feel confident enough to do so, they will rename and rebrand with a new name with the subtitle: ‘seeking a world completely free of deafness (and, by implication, deaf people)’. Hell they can go further and publicly welcome gene therapy, genetic engineering, and give support and encouragement to parents who want to select out for deafness (assuming the technology to do so ever become reality).

 

A look at the ways they back this up with hard cash is also very telling. In a note on the notes on ‘Grants payable’, £1,027,877 went towards ‘biomedical research’ with the intention to ‘fund future grants totalling £1,876,220’, almost double (p.43). The reader can discover where such funding went on page 42 of the report, for in spite of AoHL’s intention to fund ‘UK-based’ research they were generous in funding research in Australia, United States, Netherlands, New Zealand, and Germany.

 

Not all of the money went into genetics-related work, so what did AoHL fund that was? The report, again, gives us this information: ‘research into suppression of deafness due to a dominant mother gene’, ‘Biomedical research into the genetic components and underlying causes of Otitis Media’ [admittedly a painful condition], and its Biomedical research fund covers the following projects:

 

site specific gene transfer of neurotrophins in the cochlea for directing growth of regenerating neurons after deafness; RNA interference protects against hereditary hearing loss; and understanding suppression of deafness due to a dominant gene. (p55)

 

If, as a recent report by academics stated, we are on the cusp of a ‘second wave of eugenics’, AoHL’s work will be music to the ears of government (no puns intended).

 

I now subject the reader to some very dry bits of the report, for which I profusely apologize, but on the other hand, those who want further information of the results of the benefits of the merger with DRUK can find them here. I have so far written on the ideological aspects of the report: here I write about the economics behind the merger. Ideology and economics have knack of complimenting one another in politics.

 

For AoHL champion the financial benefits of their merger with DRUK. Without them, AoHL’s deficit would be far greater:

 

We delivered on our aims with an operating deficit of 0.9m in 2012/13. This includes the 1.3m income as a result of the merger with Deafness Research UK and, without this, we would have delivered an operating deficit of 2.2m (p.14)

 

To drive home the importance of DRUK, the report goes on to announce:

 

Our incoming resources of £37.4m are £0.1m lower than in 2011/12. £1.3m of this income is due to the Deafness Research UK merger and, without this, our total incoming resources would have been £1.4m less than in 2011/12, mainly because of reduced income from our voluntary fundraising income streams. This year, our legacy income was down on both budget and the previous year, which, again, is a sign of the prevailing challenges within the economy.

 

Nevertheless, AoHL received £3.3m from legacies alone, and a generous amount from various fundraising streams. In commenting on their overall balance sheet: ‘Current assets as at 31 March 2013 were £7.3m and, without the DRUK merger, they would have been £6.0m’ but there is a downside: ‘Current liabilities were £3.3m as at 31 March 2013 which would have been £2.8m without the DRUK merger.’ (p.16)

 

It’s easy to conclude that fears of posting a big loss is why DRUK have been welcomed on-board: i.e. it’s about economic reality rather than any overarching ideology. Nevertheless, the merger means that while AoHL are primarily involved in research into informing the public of hearing loss and in negating its effects, and the sums of money spent on eugenics-orientated research is fairly small in comparison to the income AoHL receives and spends elsewhere – e.g. total expenditure is £38.3m (p.14) – they have moved into the field of supporting biomedical, genetics-related studies that reeks of eugenics.

 

What all of this implies is that AoHL is, albeit tentatively and gradually, moving into the field of biomedical research aimed at eliminating deafness, but without any consideration of the wider ethical implications that ethicists and philosophers are warning about. Have AoHL’s shareholders and Board discussed the political implications of supporting the type of research DRUK was involved with, and which AoHL has now taken on board?

 

There is a risk of drifting into research that seeks to ensure hearing babies are born (not deaf ones), and that deaf babies will be prevented from doing so, or ‘cured’ of their deafness.  [Now where have we read that before?]

 

So, not only do Deaf people require legal protections from governments, but against organisations within their mist that brand themselves as being champions of those with hearing loss. I forward a hypothesis that by becoming pregnant with DRUK(s), AoHL have formed an embryo that seeks to be born without deafness, i.e. hearing.  In the process they have set in motion the negation of a negation: i.e. they sow the seeds of their own destruction but seek to evolve into a body that champion’s eugenics in relation to deafness. Only time will tell.

 

Maybe that’s not such a bad thing from AoHL’s point of view, but it also indicates that AoHL are politically active in research and policy that affects the future of Deaf people and the Deaf community.

 

Side note

The salary of AoHL’s CEO is listed as £101,353 per annum. To be fair, this represents a cut from the previous year salary of £125,454 but is pretty much a typical wage for the CEO of a charity, and remains well above the wage of which many can only dream. Such earnings have come under attack recently from a report by Mike Oliver in Disability Now.

 

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Colombia 1 Ecuador 0: being there

I have never been to a match like it and doubt I ever will do so again. What memories to cherish! Firstly though, I was fortunate enough to acquire two tickets for the match, just three days before. The result of being able to find willing sellers: I paid COP340,000 for two tickets worth COP 50,000 each.

The whole city builds up for the match. There are vendors selling yellow, blue, white or red football shirts on every street corner. People are wearing them too, the nearer the game, the more wearers. On the day itself, I went for brunch and felt odd not wearing one. Alas, come the game, the hair done spiky red, I donned a yellow one, no. 4 on front and back and the name of Cuadrado: the master playmaker.

Paula’s dad and I headed to the game by taxi. It was baking hot and humid, as usual. Now the yellow shirts outnumbered the plain, especially the nearer we got to the stadium. Embarking near the venue, we walked, sweating, and paused for a beer. Aguila light. Oh yes, cool and refreshing. Continued the walk, sweltering. The stadium comes into view – I’ve been to many, there was not really anything particularly special about this one, but, still, it always brings me a thrill to be walking into one.

Passing the first security, we had to remove our belts. Damn, but thankfully I wasn’t wearing my khaki shorts, otherwise I’d have resembled a young male follower of fashion with underwear showing. Dad sorted out the belts, leaving them at a nearby restaurant. Security let us in holding our cans of beer though. Then there was another security to pass. Then another. And another. Finally we got to the turnstiles, our tickets ripped and we were in.

The first difference from other stadiums I’ve been to becomes noticeable: walking up to the top North tier, our place in the stadium, it’s all ramp. You walk up it and it swirls round. Perfect for those who are ‘stair-impaired’ (a word I just made up). And then into the arena itself: you don’t find a numbered seat on the ticket, you sit where you can. The stadium was glorious, almost too perfect. It doesn’t ‘lean forward’ like the Amex. What an absolute disgrace to think the Amex has like a thousand stairs to climb up to the top.  It isn’t bunched up and ugly like Wembley. It rises at a perfect angle – actually reminded me slightly of the old Wembley, and the view is glorious. It’s exactly what you got to a football stadium for.

So, it’s just before 1.30pm when we are seated inside, 2hrs before kick-off, and our North Stand section is almost full already, with groups breaking out into the occasional song, whistle-blow, clap. I soaked up the atmosphere, and tried to battle off the heat with a makeshift fan. The condensation was filling my aids, they going on and off, so what I heard alternated between the roar and chatter of the crowd and tinnitus. I surveyed my surroundings and noticed that every single spectator was wearing the famous yellow shirt, with a smattering of blues, whites and reds. In all, throughout the game I counted just three people sin football shirts.

Dad pointed to the skies because dark clouds were drifting over and you could feel the menace in them. True to form, it pattered, and then, down it came, all the water of the Caribbean. Then you knew the script, because it was only 2.30. We were under shelter but there were holes in the roof, so rain did get through, meaning we didn’t escape the water entirely. My Mohawk didn’t stand a chance, and was soon dead.

I watched, in exasperation, as the pitch filled with puddles at all sections of the park. I really watched this painting unravel, and the longer it went on, the sicker I felt. All that anticipation, build up, admiring the beauty of the Barranquilla downpours and rivers, reveling in it even. And now, I couldn’t even hate it, just feel my stomach fall. The crowd became silent and I had to take off my aids due to the wet.

The refs came out to inspect the pitch which bought cries of derision. What was going to happen? It was 40 mins or so until kick off. They walked to all parts of the ground, pointlessly. The clock ticked down and the rain didn’t subside; in fact give it half an hour or so and we could all go for a swim. Or the teams could play water football or something.

Some groundsmen came by the pitch and dug pitchforks near the pitch itself: I couldn’t believe what was happening, how could a few little forks save it?

And then a miracle arrived.

Around 3.45 the puddles started to subside, even though it continued to rain, albeit less intensely than previously. How could this be happening?! I had no idea what was going on, but clearly there was some underground heating or drainage of some kind that was activated. Just as I had watched the puddles rise, and felt the sinking feeling within me, I watched them subside and felt a rising again. Down went the puddles, and the crowd began cheering again. By 4.30 it was almost entirely puddle-free; they just had to drain the corners.

Then on came the guys with the pitchforks to dig up a few remaining resistant areas. A few footballers came on to have a kick about, and then you knew the game was on, even though it was 90 minutes late. It continued to rain. Boo-yah-rasp to the rain.

So onto the game. National anthems were sang and a minutes silence was held for the Ecuadorean forward who had died of a heart attack recently, at the age of only 27. Colombians told the noisy ones to shut up and they did and the silence was respected totally.

Game on, edgy, but Colombia passed around well, although it was Ecuador who came closest, forcing the goalie into a diving save. Colombia were playing towards the north stand, so we had the best view of their attacking action, and a turning point came in the 26th minute when a Colombian player got past the last defender, ran towards goal, and was blatantly brought down from behind. The 26th minute! Immediate red card and the anticipation rose. Soon enough a shot on goal by the famous Falcao could only be hit away by the goalie and James followed up and put it in the net.

Absolute mayhem and ecstasy followed, what an experience, to be there, when that goal was scored and the players celebrated in the corner. I jumped for joy too and the whole crowd rocked and thundered, putting the skies to shame.

The rest of the half was played out, mainly by Colombia keeping possession and making a few chances, and Ecuador holding on until half time. There was a good feeling around the place. The opposition down to ten men; the Colombian side were almost sure to be in complete control of the rest of the match.

Then more drama: when all the players got onto the pitch for the second part, half the lights in the stadium flunked! Blimey, what next?! The same sinking feeling as previously didn’t quite take hold although I did ponder what would happen if they couldn’t fix the lights; ‘it’s not that dark, play the damned game!’ Fifteen minutes later they started to flicker back to life and it was game on.

Emotionally I’d been swinging up and down, left and right, and it was only half time, and as the game wore on early in the second half they slowly, gradually, sank yet again, as Ecuador, quite frankly, took hold of the game. Colombia were struggling, coming up short with their passes, looking laboured, as the opposition zipped all over the pitch. They left gaps at the back, but Colombia couldn’t exploit it, although in fairness they did have a few good chances. By and large, however, it was getting pretty obvious that the tone of the second half was set and Ecuador were the team on top.

My feelings began to churn once again, as although I glowed in utter admiration for Ecuador, I badly wanted Colombia to win. It would be history and bring me some cherries. Then, disaster – and remember Ecuador are attacking at the North end – a Colombian clearly brought down one of the opponents in the penalty area and it was stonewall. It wasn’t a sending off, but the opposition were angered no red card came, so they got set to take their penalty.

Total silence at first, some whistling to try and put the Ecuador guy off, and my thinking was: he is going to score, and if he does, they will deserve it and it’s unlikely Colombia will come back. But, lo and behold, as if some puppeteer was pulling strings from the skies, they missed! He hit it to his left and it didn’t even hit the post, just whistled clean past the outside.

I stayed seated – in sheer relief, but those around me went totally crazy, it felt like I was surrounded by Ecuadoreans and they had scored. As the game played out Colombia continued to create chances, but it was Ecuador who was on top and looked likely to score, but lacked quality in the last third.

When the final whistle went there was total joy on the field and in the stands. Many of the Colombian players collapsed to the ground, as they should because they had been extremely fortunate. Fireworks were set off outside the ground, you could see them crackle, pop and light up the sky, for the result meant Colombia were definitely guaranteed at least a play-off place in the road to Brazil.

So all my emotions were totally churned to pieces, and it was very clearly a game to remember for life for more reasons than the match itself. We watched the celebrations for a bit and then left. It was still raining. We had a small bite, another beer, and walked for a few kilometres to catch a taxi home. The walk was the biggest irritant of the night, for even though I had just been through an unforgettable experience, and even though the rain was not what bothered me, it was chaotic, there were puddles and ragged pavements everywhere you stepped (not to mention people coming in the opposite direction), and it was dark.

Eventually, however, we got a cab and got home, wet, but I started to feel the joy once again. We’d left home at 12.15 and were home almost exactly nine hours later; and that’s a local game without any long stops at pubs or restaurants either way.

And so, I have seen the Colombian national teams play three times – the first two were the women’s Olympic team at Glasgow, vs North Korean and the USA. Now I’ve been set to go to games that were called off due to poor weather – snow in Brighton in winter, for e.g. – but never sat at delayed games (ok, maybe one or two were delayed 5-15 mins for one reason or another), but never for so long. The Colombia vs North Korea game was delayed for around 90-120 minutes because the North Koreans were upset over the flying of the South Korean flag, and at Barranquilla it was the rain and failed lights that delayed it.

Still, I have the remainder of the ticket and a head and heart full of memories of a lifetime, all because, to quote Sir Alex: ‘football, bloody hell!’

See also: Rain fails to dampen spirits as James Rodriguez puts Colombia within one point of Brazil 2014

The Rivers of Barranquilla*

It does rain heavy in the city. But only torrential rainfalls, no piffling spitting and short showers here. Nothing quite prepared me for what I witnessed yesterday though.

In the evening, it poured and poured and poured, relentlessly, and soon, not only was water dripping into the flat in all kinds of places (except the bedroom thankfully), it turned the road outside into a river. I’d been told this is what happens. Indeed there are road signs that warn of cars getting floated away in river filled roads. But to witnesses the slightly dipping road outside transformed into streaming torrent of water than seemed as if it was never going to subside was utterly gob-smacking. It was also kind of beautiful in its own way.

The people do have a good sense of humour and fun though. This is Barranquilla, the happiest place in the world after all. As the water streams down, many sit on the roads, lay flat on their backs and just let the stream run over their bodies! Most of the men are walking around in shorts and just soaking it all up. That’s understandable given that for most of the time it is so hot and humid the only respite is in air-conditioned malls or homes. It makes sense, therefore, to celebrate the rains.

So here I am spending a week in the city on various errands, and hoping to obtain a ticket for the Colombia vs Ecuador World Cup Qualifier for Brazil 2014, that takes place on Friday. To confirm the Colombian sense of humour, they hold it in this baking hot place, starting the match at 3.30pm, given it’s to their advantage! Well because of a friend of a friend of a friend of a friend, etc, I was able to obtain two tickets. So I will not only witness the match, but maybe see history happen, because if Colombia wins, they are through to Brazil next year. Anyway, I’m just so happy to have got these that I can barely express or feel my joy.

Much the same feeling overwhelmed me as I sat and salsa-d and sloshed down the Aquardiente (FireWater) at La Troja bar for mine and Paula’s birthday’s last Saturday night and Sunday morning. I did get tipsy but it was a nice warm kind of lightness. Unlike exactly the same time last year, I didn’t end up being hauled into a taxi (which I have no memory of) and puking up in the morning.

So the drama outside right now continues; flashing lightning and roaring thunder (yes, it can be felt) as I drift into sleep, continuing the process of becoming a resident of Colombia. I’m also beginning to experience some of the frustrations, and having to learn to cope with them. The pace of life here is just so laid back, and nothing is ever going to happen when it’s expected to, that you can’t do much but go with the flow.

One thing does feel odd: it’s gotten into September and I don’t have to think about the long dark night’s drawing in.  It feels dreamy to be here, still unreal, and it is. And when you’re carrying out a day-to-day routine and you suddenly spot little bright green parrots flying around in the wild, what else is there to feel but the beauty that is life?

*Apols/thanks to Boney M.

A human ‘Iguana’ in Colombia, and why bridges are a good idea

“Iguana, Iguana, Iguana!” the little girl shouted, pointing to me. I laughed and bought a little bracelet off her for 1,000 pesos. I’m living amongst Mohawk-reptiles, bats, wild parrots, many other bird species, and ants. Zillions of them. They populate the dwellings of Cali, Barranquilla, and right here, invading kitchens and pouncing at anything sweet. Humans cook and eat the bigger ants [they taste like popcorn apparently], so they are obviously getting their revenge.

It’s so hot that walking out my front door every day is just like walking into an oven. It hadn’t rained for almost a year down this way, and yet in just three days it has poured down twice. It was tropical rain following thunderstorms, or a warm welcome for the Englishman, it’s hard to know. I’m a Deaf English guy living amongst hearing people in a small village and so far, after many socials, shopping and beach trips, all is going well and I have made some friends.

It only struck me when I was there, on the gorgeous, picturesque, sandy, Caribbean, virtually people-free beach of Mayapo, that these are places north Europeans would normally only head to for a holiday break. Here, for those of us fortunate enough, it was a ‘local’ beach visit. [Ok it did take a few hours’ drive to get there.] There was a hammock and after a dip in the warm ocean, I swung on that for a bit while reading Jack Kerouac’s ‘On the Road’. The visit reminded me of being a boy and within a stone’s throw of Brighton and Newhaven beaches; only it was less humid and often cooler. There were no hammocks there but they were good times nevertheless.

The drive to the beach [and to Rioacha, where we shopped and ate the weekend before last, and the one before that] is rocky driving for the first half hour. Thereafter the roads are kinder. You can stop by the roadside and buy sweet products for sale in tubs. Beats many chocolates I’ve tried in my lifetime. A lorry was overturned in the road, resting on its side, which was a reminder of the haphazard driving around these parts. Our driver often drove on the left because the right side was full of holes and bumps. It was all a breeze, though, compared to India. We passed a military tank on one of the streets last weekend, not sure why it was there. Far more common is the gasoline for sale in plastic containers or steel tanks, no doubt obtained from across the border in Venezuela. The people selling the petrol are always busy, unsurprising given this product is so cheap. [Fun fact: Venezuela petrol/gas is the cheapest in the world.]

Now when I write ‘hot’ it’s always over 30 degrees centigrade during the daytime – often it’s in the mid-30’s or above. Humidity is difficult to measure, but it’s pretty dense. Always. Respite outside comes at evening, where it drops to around the mid-20’s. Thankfully, we have air-conditioning; otherwise it would be a struggle to survive.

I run at 5am in the mornings, but last week managed a 5pm run, albeit for only 25 mins. Nearby, there’s a nice quiet road to run down, over a rail track and around a golf course. So one morning I passed over the track and turned left, and ran 1km beside said course, turned left again to run across the track, only it was blocked by a *very long cargo train* going *very slowly*, so I headed back to where I had originally crossed but when I got there the train was still struggling. The rear of the train was near, however, so I stopped and waited for it to pass. This experience is an example of why bridges and underpasses are such a good idea.

There is still a lot to do since moving to Colombia over two months ago. Write up the research articles that have been building up for years. Learn Spanish, especially. Get used to the culture of the ‘north coast’, as my partner calls it. Obtain my visa to enable me a long term stay. One of the highlights, so far, is the film nights; largely alternative, non-Hollywood. We went round to watch the remarkable film ‘Cloud Atlas’ a couple of weekends ago. It didn’t have English subtitles, but the guy’s son kindly downloaded them so I could enjoy the film amidst company. Cappuccino and a lovely Italian-style cake were served, one of many such nights one hopes. In between we can access the gem of a website watch32.com, which puts up subtitles of English language films.

Now I do miss Bristol and friends at home, as well as some of the English cuisine, especially baked beans in tomato sauce. But with the abundant delicious fruits one cannot really complain. On that note I squeezed 12 large oranges via a juice extractor which made 1.5 litres of fresh juice. Grapefruits are scarce, but the local shop was selling them so I eagerly made a purchase of a massive three. Half a litre.

Things have not been all hunky-dory; there have been numerous frustrations with bureaucrats, faulty shopping products and some utterly pointless security checks. And yucky ‘potable water’ that leaves dirt taste in the mouth. They will surely be taking up blog space in the coming months ahead. But with a gorgeous Novia, juicy fruits, ice cream, ‘jet’ chocolate, endless hot days, an easy-going pace of life, friendly people, and excellent fun football Friday’s, it’s been a great and happy start to my new life in a South American village so far.

Genetic nightmares: is the battle being lost?

Because my reply to a Facebook friend’s post was too long, it has been turned into a blog entry.

To try to paraphrase the original message: the near future is looking like this:

Genetic testing isn’t going to focus on single genes any more, but to test all 20 or so thousand genes in our body. It’s simply cheaper and more cost effective, and enables patients to choose what they want to know about their DNA.

The testing of a deafness gene can therefore be offered as part of this ‘package testing’ – done through a process called sequencing. Deafness could be in there as part of a ‘medical conditions’ test.

All this appears to be being pushed through with very little consultation with the Deaf community (nor, indeed, any community); nor do they take into account whether such a practice is ethical.

“I get a sense the battle is over,” reports the individual, whose account should be respected given they appear to be a leading figure in the field of genetics where the deaf gene is concerned.

Here’s my response:

Many thanks for this, very valuable indeed, and full respect to the person who shared their thoughts with you 🙂

Here’s what I think. Knowing you are predisposed and doing something about it need to be separated. Do people want to know their entire genetic information, or even selections of it? Ok, I get there’s a big survey being done about it in the UK. But I can bet that if things speed up there would be all kinds of pressures on people to believe that it’s the liberal thing to want to know – you know the script.

Genomics could be highly useful in some cases – for example, if you go to the doctor complaining about an ailment, or if a child is born with a serious condition that affects, say, their health and growth, the genomics approach can identify the problem very quickly, and provide appropriate treatment. I’d love to see some advances on destroying cancer, in particular, for good, and if genomics can do that, great.  I highly recommend watching this lecture (it’s fully, non-automatically, captioned), as the speaker balances the issues – and highlights the role of economics and the military (this is not scaremongering in any way, it’s real stuff, Gregor Wolbring may shed better light than I can).

But to try and do something about a ‘condition’ such as deafness, a woman still has to go through an emotional process of Pre-Implantation Genetic Diagnosis, after going through IVF, to weed out embryo’s where there’s a significant chance of a baby being born deaf. Even then it’s not 100% that they will produce a child free of deafness. The alternative is they don’t have children, or find a partner where there’s less chance of producing a deaf offspring. A great bundle of fun that’d be.

Gene therapy is still not as productive or ‘advanced’ as scientists would like us to believe. Only last week there were reports about the lack of movement on stem cell research; i.e. it’s not coming to be the miraculous salvation the public has been led to believe, yet. We were told deafness was about to be eradicated in the late 1990’s, thanks to genetic and stem cell developments on furry little mice. Funny then to read a similar report recently stating almost exactly the same thing, 15 years later, leaving one to wonder what these people have been up to in their labs all these years. Refining the art of making over-claims in order to bag big research funding grants would be my guess. I would highly recommend reading Hilary and Steven Rose’s excellent book, ‘Genes, Cells and Brains’, which highlights why people should be skeptical…for the near and immediate future anyway.

Graham Turner and I, along with others, did some valuable research on the subject of Deaf people’s views about genetic counselling; Paddy Ladd and I have taken up the baton through our Leverhulme funded project, and are currently working on a monograph that puts things into perspective, charts a balance between sci-fi and reality. We found, through our research, that is the way it is.

Yes, things are happening. Fast. Scary. Depressing. Try Transhumanism for a laugh/cry. Gene therapy, especially, has started to flicker some lights, and there are serious people working on this stuff.

But I would suggest they are not ‘there’ yet; they want us to believe there are ‘breakthroughs’ around the corner. It makes sense for them to big it up because they need the money. It makes news, so the media are complicit. But there are reports of admissions that there are still 10-20 years to go to put things into practice on humans. Ironic that, since they said the same things 10-20 years ago.

Nevertheless, I take them seriously, but suggest they are posturing and positioning themselves to justify the need for new technology and systems once they breakthrough and find ways of driving society towards a Gattaca nightmare, all on the backs of Liberal ideology.  Action on Hearing Loss bringing on board ‘Deafness Research UK’ (an organisational euphemism for ‘let’s wipe out deafness for good and forever and be proud of it’) are obviously jumping on this bandwagon, in anticipation.

Social attitudes towards disabled people can shift though, thanks to high profile things like the Paralympics. Technologists and scientists are careful to ensure they talk about disease and disability in isolation, giving a glossy common sense feel that these things are bad, like putting an arm on the shoulder of the vulnerable and saying/signing: ‘you know it’s right, get tested, get rid of it’ all the while seeing pound/dollar/peso signs in their heads.  It’s up to concerned citizens to make the links and throw the discourse broader than genetics would like us to go; I guess academics would call it ‘being interdisciplinary’.

Now comes the positives, the good news. In the research Paddy and I have completed, our (albeit small scale) study shows, through focus groups, that people do shift their attitudes when presented with positive information about Deaf people’s language and culture.

The focus groups, by the way, were led by a hearing person, who was bought into run the groups, so people were not faced with a Deaf person where they might have felt obliged to change their minds. Probably just as well because seeing me, a Deaf punk, they may have changed their minds the other way.

We’d love to replicate that on a larger scale <hint hint>. When I taught on the ‘Enforcing Normalcy’ course at Gallaudet, students came up with creative projects to counter pessimistic and negative ways of viewing ‘normalcy’ and erratic scientific discourse. I was hugely inspired. These people are the future.

Our great battle with the clause in the HFEA wasn’t the only challenge to legal attempts to push through potentially eugenic practices: Deaf people challenged a eugenic proposal in California and got it thrown off the books. Positives can be found if you look for them.

Those who want to eliminate diversity would like nothing better than to make the lay public feel it’s all over, and while some things do come to an end, this is most definitely not it. There are some dark forces behind these ‘bright new future’ moves, who have the front to suggest that what they are doing is liberal. But they are effectively undemocratic and unethical, and don’t care.

Oops, that was a bit long, but in short: it is NOT too late. And as they say at the end of every episode of Crimewatch, after the viewer has watched several examples of people hurting other people, and making you feel the fear…’don’t have nightmares’.

So farewell then, Centre for Deaf Studies, Bristol

I guess the end is in sight 😦 No-one can say it went down without a fight.

It was nice knowing you (from 2008 until 2012). Arriving full of hope and dreams of expansion and staying on long term, the crisis hit and the opposite direction unravelled.

I gained great life-long friends and fond memories of fun times, great parties and special graduation ceremonies. Two of my research projects, group rights, and deafhood and genetics, passed through you too, and I was privileged to have taught Deaf People in Politics and the Media.

My contract ran out last December, and I took up a visiting professorship post at Gallaudet for the Spring 2013 semester (in no small part due to the work I had done under your roof). You held some amazing workshops and seminars, the ones by David Harvey and Shami Chakrabarti in particular come to mind. At times you were weird, I think you will know what I mean: perfect you were not, but trail-blazing, challenging you were. There really was never a dull moment.

And your ‘team terp’…it was loyal, consistent, energetic, reliable, honest, and always up for a heavy academic challenge. It was the best ever. I miss you massively 😥

Is the end in sight for the Centre for Deaf Studies, Bristol?

It would be very sad if the Centre is closed, as indicated by the blog: Save Deaf Studies.

But I see they are not giving up without a fight.

So I’ve done my bit by composing and sending the following letter to the Vice Chancellor.

 

Dear Professor Eric Thomas

 

It was with great shock and disappointment, not to mention anger, that I read the University of Bristol is planning to close the Centre for Deaf Studies. If this decision is made, it will be a great tragedy given the excellent work of the highest quality that has emerged from the University over the past 35 years. That work has been of immense benefit not only for Deaf people, the Deaf community, and the careers of past and current staff, but the University of Bristol too.

 

It is with some shock that I read the University originally offered the Centre a subsidy of £100,000, but which has since been withdrawn.

 

It is hard to believe this decision in imminent, and I would urge you to bear in mind the current situation of Deaf studies internationally:

  1.  The Deaf community internationally is emerging as a bona-fide cultural, linguistic minority group (thanks in part to research undertaken by Scholars at the University of Bristol) at such an important historical juncture.
  2. The Deaf community, through the ‘Spit the Dummy’ campaign, is pressurizing the UK government to put in place a ‘British Sign Language Act’, which would considerably increase the demand for Sign Language Interpreters, and other vocations working with Deaf people.
  3. There are a growing number of Deaf and hearing academics who have obtained their doctorates in social science related subjects over the past two years.

 

These developments point to a future for research on Deafhood, Deaf Studies, and Sign Language interpreting.  These are historically significant times. In this context, it is difficult to believe the University is busy driving in the opposite direction. It makes no rational sense.

 

I write as someone who worked at the Centre for four years, from 2008-2012, as a Research Associate. I remain a Honorary Member of the University of Bristol, and so maintain ties with the institution.

 

The University has also been invaluable for my career as a Deaf academic. The research I undertook at the Centre has enabled me to build on work that I had begun with the publication of my PhD and research on genetics. It ultimately played a part in me being offered a Visiting Professorship at the world renown Gallaudet University, Washington DC, which I took up in January 2013, having been made redundant from CDS in December 2012.

 

I have read your statement explaining the reasons for discontinuing CDS. I was a staff member until December 2012, and the statement is at odds with my experience at the time. I did not feel the University was as supportive of the Centre as it could have been. For example, following the disbanding of SACHS, there were promises to re-house CDS within the University, but this did not happen.  There was a long delay in appointing a project manager who could have supported CDS and helped to find a suitable place for the Centre in the long term.

 

I’m also aware some staff were offered, and accepted, voluntary severance pay; but it is not the case that all staff were eligible, and the University is therefore effectively sacking staff who have served the University with such passion and energy over the years. In any case, this is no excuse for dismantling such a valuable Centre.

 

I appeal to you to rethink your plans to close CDS. Please commit to your original promise not to close the Centre and to offer a subsidy.  That would enable the Centre to focus on developing a top quality institution of research into sign language and Deaf culture, and sign language Interpreting.

 

It is not too late to put research into the rights of Deaf people ahead of the economics of the current ‘austerity’ climate. In the long term the University will be a great beneficiary.

 

Don’t throw away a Centre that is so revered across the world. It should be possible to work out a solution with political will and commitment. If the University is prepared to give the Centre a long term plan, there is no doubt it can continue to be a pioneering Centre for Deaf studies related research.

 

Yours sincerely,

 

 

Dr Steven Emery

Honorary Staff Member, University of Bristol