By Alison Bryan | December 22nd, 2007
Today the Sunday Times is carrying an article on “Deaf demand the right to designer deaf children“, which is supposed to be an article on this campaign. Except it totally misrepresents what this campaign is about! We were predicting sensationalism, and misrepresentation in order to making hearing people choke on their cornflakes over breakfast, but there’s nothing like seeing this in print. In the interests of transparency, these are the e mails that I sent to Sarah-Kate Templeton, Health Editor at the Sunday Times. Please take time to read the article then my comments below.
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21 December 2007
Hi Sarah-Kate
You contacted Francis Murphy at the BDA regarding the Stop Eugenics campaign. Further information is available on our website here: stopeugenics.orgThe campaign originally came about from a post (written by me) on Grumpy Old Deafies, and there was a lot of anger from Deaf people over this issue (see ome of the comments as an example). Consequently we set up the Stop Eugenics movement, to respond to this Bill.
Subsequently the BDA lent its support to the campaign, acting as a espondent agent on behalf of the UK Deaf community. A copy of the BDA’s letter can be found here.
The NDCS then responded with its Press Release.
[Side note to readers: neither organisation is behind this campaign, and this campaign is independent].
A Press Release is due to be released by Stop Eugenics, and we are currently collecting signatories (this was only sent out today). You can find a PDF of this here.
For background reading, you might also be interested in reading this.
In terms of your specific questions:
[Sunday Times comment] We understand there are some deaf people who are opposed to this clause because they believe the parents should be allowed to choose a deaf embryo instead of a hearing one if that is their choice.
This is not just about deaf people opposing the clause, but others are against it too. It has much wider implications than deaf people. Not just disabled people either, but statements from the government who is permitted to exist and who is not, and moreover who is or is not permitted to reproduce.
We are seeking reproductive liberty, and the right to choose since screening will be legal in these circumstances. General reproductive liberty in the UK is not absolute, since for example the Bill bans sex selection, or selection on the basis of traits; and eugenics is cited as a reason behind this, and also population demographics.
However, the Bill seeks to make “serious disease” a special case, and allows for selection on the basis of “abnormalities”. Screening is already in place, however, the Bill seeks to go one step further and curtails basic reproductive freedoms within the framework of selection. Defining who is permitted to reproduce, and which class of human embryo are permitted to be developed. For a government to make statements around this, we regard as a move towards eugenics.
The clause makes a very clear statement around the one way nature of selection. i.e. you are allowed to select (what some medic defines) as “healthy”, in favour of a “diseased” embryo. Yet it does not work the other way. There is no equal choice, and whether e.g. deaf person wants to pick a deaf embryo or not is immaterial, as on a policy level there is a clear statement around interference over a right of reproduction and existence. Any move to discriminate against certain classes of embryos from being developed is a move towards eugenics.
The wording of clause 14(4)(9) also refers to “persons”, in other words gamete egg or sperm donors. The current wording would likely prevent those who carry deaf genes (amongst others) from being egg or sperm donors. This already exists within guidance (see HFEA Making Babies document), but parliament is pushing this further and seeks to make this law.
Current guidance also prohibits those with severe refractive errors from being donors, would the population who wears glasses be happy with this?
[Sunday Times comment] We understand that most deaf people would choose to put back a hearing embryo instead of a deaf embryo but believe some people in the disability movement believe the choice should be left with the parents.
Very few people would not undergo screening in the first place, and relatively few go down this route, deaf people included. In terms of deafness, only one gene can currently be tested for, Connexin 26, and this could change in future (it is thought there’s over 100 hereditary genes in relation to deafness).
Since parliament is allowing for selection in these circumstances, then choice should be allowed in that it should not be permitted to discriminate against certain classes of embryos.
When it comes to IVF guidance already states that there must be a match the physical traits of the parents (or mother if not part of a couple, and undertaking IVF alone). Who said deafness is not a trait, and who has the right to define us as diseased? Where does traits being and end, and who has the right to define this?
For example, skin colour is a trait. A black person might encounter many barriers in their lifetime, but public policy or parliament would not seek to label to label them as defective because of society barriers or attitude, or issue statements that they do not have the right to life. That argument is absurd, and would be a statement of prevention of certain births within a group, yet is readily applied to deaf people.
Another example, I’m also Welsh and come from a family that uses a minority language (Welsh). Welsh people can cost the taxpayer a lot of money, yet no-one would contemplate trying to send a Bill through parliament telling Welsh people they could not become donors, or set up measures with the view of curtailing the reproductive freedoms of Welsh people. On a policy reasoning level, such a group of people could be classed as expensive to society, thus lets curtail their right to life. Yet it would not happen, because it does not fall within a medical definition. Who has the right to give us that label?
The UN Convention on the Prevention and Punishment of the Crime of Genocide states:
“Article 2
In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:
…………..
(d) Imposing measures intended to prevent births within the group;”
Whilst legally deaf people might not fit within the definition of ethnicity, deaf people will identify as such and display the characteristics of an ethnic group. Parliament is seeking to impose measures through a) non selection of certain embryos from existing and b) gamete donors, and thus perceived as an act of genocide.
What if someone wanted their deaf friend to assist with IVF via a clinic? Under this clause they would not be allowed to do it. The government is seeking to curb this, by making statements that a) we shouldn’t be here / we are second class citizens and b) curb our basic reproductive freedoms, and prevention of births with in certain group. This goes against statements of inclusive policy.
The government (Department of Health, parliament) to date as far as we are aware has not consulted with us, despite its claimed “wide spread” consultation. The Disability Equality Duty places an obligation on public services for “public authorities [including the DoH] take responsibility for tackling institutional disability-related discrimination”, and to undertake measures to include us. However, I’ve yet to see ANY evidence of us being consulted about issues that have a direct impact on us (and it is deaf people that has been specifically referred to in policy reasoning).
During parliamentary consultation of this Bill, and in the government’s report (2007):
“Andrea Minichiello Williams, Public Policy Director, Lawyers Christian Fellowship, expressed the wish that a disability group wasrepresented.” Page 100
So why wasn’t this followed up, furthermore is the government breaking its own law?
Since there has been no consultation that we are aware of, how much do these people know about us? For example, during this debate on this Bill a peer in the House of Lords seemed to think that deafness was a “life threatening” and a “fatal” condition. A person with this kind of ignorance that gets a say in whether we have the right to exist, over and above asking deaf people themselves?
Should you have any other questions, please do not hesitate to contact us.
Many thanks, Alison
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21 December 2007
Alison,
Thank you very much for all this very helpful information.
I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?
Kind regards
Sarah-Kate Templeton
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21 December 2007
Sarah-KateThis is the letter, and currently a working document. We only started collecting names yesterday, and far from complete etc. We were aiming to pull this together by January 2008 (PR dated for then), but as you may appreciate its Christmas and many people are unavailable.Please note the wording of the letter, which is trying to drive home reproductive liberty rests in the hands of parents since selection is being allowed in this instance, and non discrimination or rather how deaf people amongst others are perceived in law /policy. This might not be the same sensational angle you might be hoping to paint deaf people amongst others in.
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21 December 2007
Thank you Alison for this additional information.
Kind regards, Sarah-Kate Templeton
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21 December 2007
Sarah-Kate
One other thing, and something I noticed earlier but wanted to pick up on:
“I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?”
What’s abnormal? Who decides we are abnormal? Who has the right to label us as that including medicine?
Are black people abnormal too, because they don’t come up to some wider ideal, fit within traditional society structures and encounter discrimination on a daily basis through bad attitude and media stereotypes? This is not about abnormality but diversity, and bottom line is we are all people with the same right to exist and reproduce.
Do you have the right to label deaf people including me (or other groups) with an abnormality? Why is deaf people to hearing, any different from say Black to white people?
On an entirely *personal* note, *to me* a deaf or hearing embryo is no different from a boy or a girl. One is not better over the other. However, when parliament seeks to go down the path of telling individuals stating that one must be preferred over another Parliament would not seek to attempt to pass a law to say if you are going for selection on the basis of gender, you are only allow to choose boys, but you are never allowed to pick a girl. How would females (including you) feel about that? Whilst most people would not go for gender selection (in the same way as most people would not go for deaf/hearing selection), the imbalance in policy (because selection is being treated as a unique case in these circumstances) is still there. Swap gender for deaf / hearing, and you might have an inkling of what I feel about this issue.
Alison
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Now can someone please tell me how the above comments transpired into this article, including what we stand for? Including statements such as, “Deaf demand right to designer deaf children”? The media likes to paint Deaf people in a particular light, and is totally ignoring the eugenics issues around wider policy and how we are having to respond to it. More about my thoughts on the RNID later.
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