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.

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5 comments

  1. I believe the whole campaign is a non-event. It doesn’t affect deaf people at all, it offers HEARING IVF potential parents a hearing instead of a deaf child, a choice they would probably have made anyway, and so would some deaf parents for that matter. As a deaf couple CAN choose a deaf child (Assuming the deaf gene actually emerges as dominant !), this is going nowhere, and it is significant, that disabled people have offered little or no opinion whatever on it.

    There were 25 high profile online requests, including a 3 TV stations (One of them the BBC), for a deaf couple in the IVF program to speak out, they didn’t find one. There is a view in Islington the ‘choice’ relegates deaf people are unworthy of life, this is not the case, and it would only and potentially affect the NEXT generation not his one, and only via IVF programs now. As there are also many many different genes pertaining to deafness, there is no real guarantee they could spot them all anyway. People still go deaf after birth via various unrelated genetic issues…

    Because British medial professionals have read the American experience (The deaf lesbian issue was a turning pint), they wanted legal cover to avoid claims of designer children (Forbidden in the UK, ALLOWED in the USA !), and to avoid a parent suing the system when a choice is there, the issue of ‘letting nature take its course’ is undone, because lawyers stepped in, so they cover their back, genetic ID is defeating natural selection.

    Prepare for insurance companies and many others latching on to genetics too, because once they I know for sure you could produce a child with a terminal and ‘costly’ illness, they won’t cover you, banks won’t give you mortgages ! The RNID published a report this week, that various deaf and loss aspects cost the UK 16 billion every year…. governments will want to save money there. Since the deaf gene can be removed prior to fertilization no laws are being broken, life hasn’t started.

  2. My posting has come about due to the fact I understand there is a march going ahead on Saturday 12th April, but I’m also not alone in being unsure what the march is aiming to achieve. A request for further information was posted on StopEugenics but since that time there has been no reply, hence this posting.

    You need to return to the reasons why the campaign was set up in the first place; Baroness Deech made her comment in the Lords that this Clause refers to the deaf gene; the Department of Health referred to it as an example of which gene it would apply to; and the Genetics Commission failed to adequately consult with deaf people in regards to their views and feelings on genetic issues. So this is far from a ‘non-issue’: there are powerful people who consider deafness to be an ‘abnormal condition’, an ‘illness’ or a ‘life threatening disease’; it is anything but and that’s why they are being challenged on this specific Clause, amongst other reasons. It will be much easier to upgrade that specific Clause if it becomes law, much harder to remove it.

    If it is so inconsequential, then it should be a very simple matter of removing the Clause; but those requests were not taken up by the Lords and MP’s replies to individuals have been far from positive, and so the campaign continues.

  3. TigerDeafie,

    To response to your question. IDC’s March are focus on Clause 14 (9)(8-9), and also on some words are hidden in the Bill that are relevant to Deaf people.

    Stop Eugenics has not email to the official email address or leave a comment on our blog, or did not mention the Islington Deaf Campaign name so there were no response.

    There will be a vlog soon launch relevant to your answers.

    http://www.ideafc.blogspot.com

    We have a response from our MP, and a response from Health MP but he choose to pass to NHS which seems Deaf Community is not his top prority.

    We aims three conditions – stop the bill to removing deaf genes, and we demand a BSL Act, and getting deaf schools back (BSL and billigualism).

    This is clear and extremely important to support the March. This is danger of deaf community – need our strength back on the Marching, and make the Government aware!

  4. What saddened many observers from the deaf community (Few involved at all in the clause campaigns), was the attempted hijacking of the Islington Campaign by stop eugenics. Instead of ‘deaf unity’ what we saw was deaf one-upmanship, carried out mainly by stop eugenics who have an axe to grind with members of the Islington campaign, that did it for me…. the last thing we needed was a petty power struggle… I gather Islington slated Paula as audist… Where ARE the real deaf these days ?

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