Telegraph on ‘deaf babies’ we are still failing to get the message across

This report appeared in the Daily Telegraph today.

It is a positive report in so many ways, as it demonstrates what we already know: pressure from activists (you see, pressure politics DOES work!!) has actually forced the Department of Health into a climbdown (though whether it will find its way to Parliament is a different matter).

I have met the two health officials involved in rewriting the explanatory notes, and they were genuinely concerned at the feeling amongst Deaf people on this clause, and relating it to deafness. They were open and willing to learn, and I think they deserve credit for being open to the case we at Stop Eugenics have been putting to them.

But the Telegraph heading is actually quite a disappointment as far as I am concerned. We are not out to create deaf babies, how many times do we have to make this clear before the message gets through? Maybe it probably never will, but it does show that, in spite of what the media write, it is still possible to influence change in spite of all the forces that seem to be ranged against you.

It does not stop here, however. It is only the explanatory note that refers to deafness that is subject to a suggested amendement; it won’t stop the clause proper.

There is still work to be done, particularly because Baroness Deech made that statement in the Lords that the clause 14/4/9 applies to deaf people. And the clause tries to legalise something that the state is best kept out of anyway cos there are far too many scenarios, possibilities, issues, that can’t be legislated for and are best made privately.

That Inspiring Debate on Genetics in UK on 9th April…with a caveat

This post is coming somewhat a few days after the event of 9^th April, but better late than never I hope!

I have taken a jolt from the events surrounding the fact that one person at the event was attacked by a couple of others (more on that later): that is not a nice feeling when it happens to a friend, but I tried to support the person as much as was possible, while also having to grapple with the nerves of having to take part in the debate, and I had also had intense (but useful) genetics meetings earlier on Wednesday and also on Thursday.

It risks taking the focus away from what was, for me, one of the best events I have seen that involves Deaf people concerning a political issue for years. So while I do not in any way want to belittle, undermine, or ignore what happened with the attack, I do want to try and firstly write something of the spirit I felt being there.

I can’t remember the last time being part of an atmosphere such as was the case on Wednesday: utterly electrifying, and probably not felt since the march/event meetings on BSL recognition. In many ways I felt a lot more could be taken from this occasion, simply on the basis of who was present at the debate, the atmosphere created, and just the sense that everybody present had so much to contribute.

The incredible thing of all were the mix: medical people, geneticists, and department of heath officials, genetics interests groups, mixing with local Deaf people, Deaf academics, and representatives from Deaf organisations, including the campaign group Stop Eugenics and the BDA.

The way the seating was arranged (it is hard for me to explain this) meant that people felt so close to you when you stood up to speak/sign; it wasn’t like a flat classroom or a huge lecture type all. It was really a dynamic setting.

This also wasn’t one of those conferences that you pay ridiculously huge amounts of money to attend and so in the process exclude those on lower wages and are more likely to get a balance of professional heavies who can afford to go because their work pays for it. That was, of course, thanks to the Progress Educational Trust, who made no charges, and who, incidentally, appear to favour dropping/amending the clause. But the thing is, ‘professional’ (Deaf and hearing) people turned up anyway, out of genuine interest, and not cos their job demanded it.

Neither was it a show for men/women in suits telling you how it is and then giving the ‘proles’ from the audience a chance to have their say: in fact after the three speakers had given their 10 mins view, and apart from having had one or two times each to respond, this was an occasion for as many people to come forward and have an opportunity to put their point of view: professors, government reps, Stop Eugenics activists, BDA (National and Wales), IDC, NDCS, and so on. The event did not end with any so-called experts telling you what the answers were, because the truth is there aren’t any simple ones (other than, of course, dropping the clause!).

And the guy who was the speaker at the debate other than myself and Anna Middleton; Colin Gavaghan; I am linking to his website: go see what this guy has to say; he has written on this issue and there is a link on the right hand column of his page: I may not agree with all his finer points, but his approach towards the issue is very refreshing and if you are an activist I’d count him amongst your allies.

Everyone I spoke to after the event had nothing but positive things to say about the event and what was said/signed; other than the attack on the friend, the vibes were buzzing, people wanted more such debates, they wanted to know ‘what next’.

The event was ticket (free) only because they can only cram 100 people into this hall (and when I agreed to be a speaker I wouldn’t have thought we’d get more than 40 or so, cynical me); it was sold out and there was a long waiting list, plus I understand some people who had driven all the way from Bristol had to be turned away due to the event having started and being packed out completely.

Where-ever else do we see this happening? It proves very clearly without doubt that Deaf people ARE political people; this specific IVF issue will hardly affect anybody, but the interest does not come as a surprise because it will affect ‘the Deaf community’. Just in the same way that issues regarding education do, this is another that Deaf people involve themselves deeply in, because they know what it can lead to.

It was with great sadness that my friend was attacked; this spoilt the event in a big way, however, my friend showed great bravery and dignity to stand up to this attack, ignore the demands of one other, to come into the meeting, sit through it, join us all afterwards for drinks and chats, and then pen a fantastic summary of the event itself. And she has continued to engage with the issues ever since: I, in contrast, have found it hard to deal with, needing to take a few days ‘off scene’.

My hope is that people will not allow that event to overshadow what was, in effect, a very interesting debate. I hope that people will take inspiration from it.

Our international allies will surely be assured that we UK activists are fighting this every inch of the way!

‘Isn’t that all a bit Adolf Hitler?’ the taxi driver said.

Text message from a friend today:

“Today my taxi driver asked me about my work, so I told him about the Bill, and his immediate response was, without me declaring my position on it all was ‘Isn’t that all a bit Adolf Hitler?’ and we went on from there.  If it is so obvious to ‘the man [sic] in the street’, what is the problem with our elected representatives? Maybe we could do more somehow to stir up the general population to support us. Sigh.”

And that is in addition to the ‘lass’ he’d spoken to about it only the day before, a waitress, who was so horrified she started off discussing it with her working colleagues…who also agree the clause was out of order.

Tiger

Five years after BSL is acknowledged: was it worth it?

Today is five years to the day that BSL was finally acknowledged (although it’s down as being ‘recognised’ in the official statement I don’t buy it) by the UK governement. 

Let me be clear.  Deaf people should celebrate because it wouldn’t have happened without the action of people up and down the country: the marches, the demos, the direct action especially.  Without that we’d have nothing to refer to, nothing to show for it. But sometimes I wonder if it would have been better to have publicly rejected the statement, and fought on, since let’s face it, it’s hardly done much to change anything?  Plus we were still quite fired up into taking action, and this statement seems to have killed that off. 

The other thing is, that the very next day this statement was announced, the UK joined the USA in it’s illegal invasion of Iraq.  I recall watching the nightly news bulletins of ’shock and awe’ bombs raining down on the beautiful and historical city of Baghdad. In that context it was very hard to celebrate the statement effectively, knowing people were being mercilessly killed in Iraq.

However, people did begin a mass movement to oppose the war and I attended demo’s in the UK calling to ‘Stop the War’; if we had rejected the statement we could have continued with the demoing, but it’s too late to reflect on ‘what if’s…’ now.  Hopefully this will be a learning process; I certainly learnt a lot from it.

And here we are, five years on, yet another meeting has recently been held with government and organisations, which incidentally we still don’t know anything about, what happened at this meeting of the suits and our PM Gordon Brown??  All I have seen is the photograph of those who attended the meeting, and a brief outline of what was agreed.  And also this is all taking place in the context of the HFE Bill, clause 14/4/9.

Is this the setting for a BSL Act finally being seriously considered?  It would not be perfect, but would nevertheless be a step in the right direction.  And if that does come to fruition, all fine and well, but I still feel that at some stage, the marching boots will be out again!

To march or not to march (against Eugenics)…is that the question?

For some time now it has been known that Islington Deaf Campaign (IDC) are organising a march through the centre of London ‘to stop remove deaf gene’. From their website it is clear that their campaign has arisen as a result of the HFEB bill.

They are to be congratulated on that.  A march will put further pressure on MPs and the government to drop or amend the clause. A march will receive media attention linking the government with Eugenics and that is something they will not want. It has also become particularly urgent in light of the fact that the Lords have completely ignored the StopEugenics campaign, and therefore the HFEB Bill and the clause is now set to be processed through Parliament…unless it can be stopped.

However, there is some confusion with the aims of the march: are IDC organising against the entire Bill or just the clause?

StopEugenics has sought clarification on this but are still awaiting a reply. StopEugenics was not set up to oppose the entire Bill, only the clause (see here for some of the reasons why the whole Bill is not being opposed). Individuals might be against the Bill in principle and that is up to the individual if they want to oppose the whole thing, but not necessarily everyone in StopEugenics does so, and therefore StopEugenics is not in a position to support a march which opposes the entire Bill.

But there is a more fundamental problem. Nowhere in the Bill is there anything that will lead to the compulsory removal of the deaf gene. It is clause 14/4/9 that is the problem. If it becomes law it will mean a form of eugenics where parents can choose hearing genes over deaf ones, BUT only during the IVF process and then only if they decide to have the test for the deaf gene. If the clause is removed, however, it removes allowing parents the (eugenics) opportunity to create a hearing baby.

IF the march, however, is being planned as a general, broader attempt to ’stop remove the deaf gene’, of which the clause in the HFEB Bill is just one example, then that would be a different matter and would undoubtedly be supported by a lot of those involved in the StopEugenics campaign.  There does, however, need to be some clarity of the various ways in which the deaf gene is under threat other than from this clause; otherwise I am left wondering for what reason the march is taking place other than it being linked specifically to the HFEB Bill.