Its been one crazy week, with the media having gone barmy for the Deaf genetics story; it has probably been covered by nearly all newspapers, and loads more radio stations. Give it a few more days and the entire UK radio network will be complete! Oh, the irony, radio, the most inaccessible media of the lot! (All articles relating to the genetics story can now be found on http://stopeugenics.org)
Have nothing but complete admiration for Tomato Lichy and Paula Garfield (not forgetting Molly’s stunning appearance on Breakfast News!); you gotta hand it to those guys, being prepared to have their personal story conveyed into homes up and down the country, scaring some but winning support from many more and forcing people from all sides of the political spectrum to come off the fence. Sadly, it seems most just.don’t.get.it.
However, a friend texted me late last night to tell me that on the Politics Show, Michael Portillo and Robert Winston were discussing the HFE Bill, and here is what he told me, saying the “Bill and deaf people [are seen] as the real moral dilemma – the complexity obviously really struck him [Portillo]”. I can’t believe I’m sat here thinking that an arch right winger like Portillo wins my respect for at least been thinking about this with a bit of sense, compared with a once fervent socialist like David Blunkett, who is, unfortunately, more typical of the media reaction. I quote Portillo from the radio transcript: “It makes one wonder if the law is necessary at all,” before Professor Pembury suggests it is the clause (the now infamous 14/4/9) that isn’t necessary, not the Bill itself.
With all the media reporting, I was taken back to thinking when we first began the StopEugenics campaign; we worked hard at getting a press release together, making contact with Lords and MP’s, getting everything up in BSL, people chipping in with amazing graphics and that stunning ‘STOP’ video. True, it seemed to have worn a lot of us down, especially cos it happened before Xmas, plus we had to try and make sense of the Bill, the clause, the issues, etc etc.
We did get some response from MP’s, the dire Sunday Times article, and a few smatterings of publicity and things happening; but it has really been the story of Tomato and Paula in The Observer, and the radio interviews that have followed, that’s taken it all to a hyper-level.
That is always how it was probably going to break through though. Right?
Now, there is a dilemma, cos the story has hit the news, but it has also been completely twisted. Is it wise to push this story? The truth is, that ever since StopEugenics started up, there has been a request, by various news outlets, put out to try and find a Deaf couple who are going through or have been through IVF. Since none could be found, there has been a silence.
Now a couple have been found, who reflect intelligently on the legislation, because from their perspective, you can see where their desire for a deaf baby arises from, but the resultant risk is that it will bring a reaction from those who consider deafness as something to be avoided at all costs, as if a drop of it will set off some kind of monsters of a bad dream. The alternative is to shut up and stay silent in the hope that we can quietly convince MP’s and those with power, that we have a just cause (perhaps even waiting to try and get the whole media onside before going ahead with the story).
But the media has always worked to its own logic when it follows news stories; the way they are covering Deaf issues is not unique. It is an uphill battle to get the media to focus on the issues as those involved in campaigns see them, it being often not so much on what is reported as what is not reported (cos those in charge of the media either don’t think it will make a good news story or it offends capitalist sensibilities and profits).
Most of the news has not been sympathetic and stuck on the broken record of Deaf people wanting to create a deaf baby (never mind the fact, as Tomato has pointed out, that the embryo is already deaf, it’s not a question of it being ‘created’ but chosen).
Now, I have never been comfortable with the question of ‘choice’ in this issue: better to leave things alone, cos really, there is nothing wrong with being deaf. But if the choice of a hearing embryo is going to be allowed, then so, too, should a deaf embryo: and this is where people get horrified, because they consider deafness to be something to be avoided, a disability, or an illness. Our society is not yet ready to think differently about deafness, but one day it definitely will be, and what we see here in our lifetimes is an embryo (no pun!) of the new thinking emerging around Deaf people that will be accepted discourse in future years to come.
Amidst all the scratchy media writing (my worst offender award goes to the Daily Mail, yes, imho beats even Blunkett!), however, some very inspiring stories and comments indeed are filtering through. The first I’ll mention, a 13 year old guy who, having listened to BBC Radio 4’s Moral Maze, the radio programme that I took part in, said to his father:
“It is easy: should be no choosing allowed pre-birth and all medical and social efforts and money put into resonding as fully as possible to whatever arises from birth onwards.”
Wise words indeed!
The article by Dominic Lawson is the very best journalism we’re likely to see. And what a fab write up by the Coterie of Zombies, that really cheered me up; the person who wrote that makes a great analogy, of Deaf being dressed up as baddie ‘terrorists’; and that, to me, is extremely apt. The media creates far bigger monsters than are really evident. You see, there are a lot of people out there who really do understand, from young people to zombies.
And that gives me hope.