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<channel>
	<title>Stop Eugenics!</title>
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	<link>http://stopeugenics.org</link>
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	<pubDate>Sat, 03 May 2008 09:35:14 +0000</pubDate>
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	<language>en</language>
			<item>
		<title>Transcript of &#8216;Debating Deafness And Embryo Selection: Are We Undermining Reproductive Confidence In The Deaf Community?&#8217;</title>
		<link>http://stopeugenics.org/2008/04/23/transcript-of-debating-deafness-and-embryo-selection-are-we-undermining-reproductive-confidence-in-the-deaf-community/</link>
		<comments>http://stopeugenics.org/2008/04/23/transcript-of-debating-deafness-and-embryo-selection-are-we-undermining-reproductive-confidence-in-the-deaf-community/#comments</comments>
		<pubDate>Wed, 23 Apr 2008 12:40:01 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Law &amp; Policy]]></category>

		<category><![CDATA[News]]></category>

		<category><![CDATA[Support]]></category>

		<category><![CDATA[deaf]]></category>

		<category><![CDATA[eugenics]]></category>

		<category><![CDATA[genetics]]></category>

		<category><![CDATA[progress educational trust]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=134</guid>
		<description><![CDATA[On the 9 April 2008, the Progress Educational Trust and the Wales Gene Park, organised a debate in Cardiff, &#8220;Debating Deafness And Embryo Selection: Are We Undermining Reproductive Confidence In The Deaf Community?&#8221;  This debate was primarily to focus on the merits of Clause 14(4)(9) of the Human Fertilisation and Embryology Bill.
This event was [...]]]></description>
			<content:encoded><![CDATA[<p>On the 9 April 2008, the <a href="http://www.progress.org.uk/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.progress.org.uk');">Progress Educational Trust</a> and the Wales Gene Park, organised a debate in Cardiff, &#8220;Debating Deafness And Embryo Selection: Are We Undermining Reproductive Confidence In The Deaf Community?&#8221;  This debate was primarily to focus on the merits of Clause 14(4)(9) of the Human Fertilisation and Embryology Bill.</p>
<p>This event was oversubscribed, and had a long waiting list; which gives indicates the topic&#8217;s current importance.</p>
<p>A full English transcript, <a href="http://stopeugenics.org/files/2008/04/debatingdeafness.pdf" target="blank">can now be found here</a> [PDF].</p>
]]></content:encoded>
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		</item>
		<item>
		<title>Disability Now Coverage</title>
		<link>http://stopeugenics.org/2008/04/14/disability-now-coverage/</link>
		<comments>http://stopeugenics.org/2008/04/14/disability-now-coverage/#comments</comments>
		<pubDate>Mon, 14 Apr 2008 12:45:48 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<category><![CDATA[hfeb]]></category>

		<category><![CDATA[media]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=131</guid>
		<description><![CDATA[Disability Now wrote a recent Editorial which can be seen here [PDF].
This compliments a recent article by Dr Steve Emery, in the same publication.
Details of other media coverage can be found here and here.  An updated list will follow shortly.
]]></description>
			<content:encoded><![CDATA[<p><img alt="Disability Now Logo" src="http://stopeugenics.org/files/2008/04/dn.jpg" align="right" /><a href="http://www.disabilitynow.org.uk/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.disabilitynow.org.uk');">Disability Now</a> wrote a recent Editorial which can be seen <a href="http://stopeugenics.org/files/2008/04/p03-editorial-page.pdf" target="blank">here</a> [PDF].</p>
<p>This compliments <a href="http://www.disabilitynow.org.uk/latest-news2/deaf-activists-bill-and-201cdesigner-babies201d-storm" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.disabilitynow.org.uk');">a recent article by Dr Steve Emery</a>, in the same publication.</p>
<p>Details of other media coverage can be found <a href="http://stopeugenics.org/2008/03/11/deaf-people-genetics-media-coverage/" target="blank">here</a> and <a href="http://stopeugenics.org/2008/03/17/deaf-people-genetics-media-coverage-part-2/" target="blank">here</a>.  An updated list will follow shortly.</p>
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		<item>
		<title>Transcript: BBC Radio Wales, Good Morning Wales</title>
		<link>http://stopeugenics.org/2008/04/11/transcript-bbc-radio-wales-good-morning-wales/</link>
		<comments>http://stopeugenics.org/2008/04/11/transcript-bbc-radio-wales-good-morning-wales/#comments</comments>
		<pubDate>Fri, 11 Apr 2008 12:02:57 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<category><![CDATA[anna middleton]]></category>

		<category><![CDATA[bbc]]></category>

		<category><![CDATA[bbc radio wales]]></category>

		<category><![CDATA[colin gavaghan]]></category>

		<category><![CDATA[deaf]]></category>

		<category><![CDATA[deaf embroys]]></category>

		<category><![CDATA[eugenics]]></category>

		<category><![CDATA[hfeb]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=129</guid>
		<description><![CDATA[BBC Radio Wales&#8217; programme Good Morning Wales broadcast a debate on genetics on Wednesday 9th April 2008, at approxtimately 8:40am.  Here&#8217;s a transcript, with thanks to Claire from TeamHado.
Rhun ap Iowerth ??? Now you might assume that if deaf people have children, they???d hope that their hearing would be normal. However, you might be [...]]]></description>
			<content:encoded><![CDATA[<p>BBC Radio Wales&#8217; programme <a href="http://www.bbc.co.uk/wales/radiowales/sites/goodmorningwales/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">Good Morning Wales</a> broadcast a debate on genetics on Wednesday 9th April 2008, at approxtimately 8:40am.  Here&#8217;s a transcript, with thanks to Claire from <a href="http://teamhado.com/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/teamhado.com');">TeamHado</a>.</p>
<p><strong>Rhun ap Iowerth</strong> ??? Now you might assume that if deaf people have children, they???d hope that their hearing would be normal. However, you might be wrong. There???s an intriguing debate going on at the moment over whether such parents should be able to choose if their child is deaf or not. </p>
<p><strong>Bethan Rhys Roberts</strong> ??? well, a clause in the controversial Human Fertilisation and Embryology Bill going through Parliament at the moment would mean embryos used in IVF treatment would have to be screened out if the child would be born deaf. Some deaf people say that is wrong and that they should have the right to have a deaf child. </p>
<p><strong>Rhun ap Iowerth</strong> ??? Dr Colin Gavaghan is the author of <em>Defending the Genetic Supermarket</em>, and a lecturer in Medical Law and Ethics. Good morning. </p>
<p><strong>Dr Colin Gavaghan</strong> ??? Morning. </p>
<p><strong>Rhun ap Iowerth</strong> ??? Dr Anna Middleton is with us in the studio. She works in the Genetics department at Cardiff University; both of you speaking at an even debating the issues tonight. Dr Middleton first of all, just tell us what???s possible at the moment in terms of the choices that parents could potentially have.  </p>
<p><strong>Dr Anna Middleton</strong> ??? Ok, so this legislation is surrounding the use of IVF and genetic testing. So if a couple have a strong family history of an inherited genetic condition, they could go for IVF, have their embryos tested and could have the embryos implanted that don???t have the serious genetic condition. And that???s been round for a little while and the reason this has caused controversy is this new layer of legislation is now looking to be passed, which says it applies to deafness. So if there???s a selection of embryos ??? some deaf, some hearing ??? then what the Government wants to do is make it law to only select the hearing embryos. </p>
<p><strong>Rhun ap Iowerth</strong> ??? And in genetic terms, it would be very easy to identify which of those embryos would be a child that would have hearing problems, or whatever? </p>
<p><strong>Dr Anna Middleton</strong> ??? Yeah. If the family history is strong and a known gene fault has been identified then yes, it is technically possible to do that. </p>
<p><strong>Rhun ap Iowerth</strong> ??? Dr Gavaghan, an ethical minefield here. How on earth do you try to decide? On what grounds do they decide whether this should be available or possible under law, or not? </p>
<p><strong>Dr Colin Gavaghan</strong> ??? It isn???t&#8230; It???s arguably an ethical minefield, but what occurs to me is that it may seem very obvious and very intuitive to you and I that given a choice, any family would want to have a child that could hear, rather than one that couldn???t, and it???d be a strange choice to choose the opposite. My position is that I don???t think it???s really the law???s proper business to interfere with decisions that strike us as a bit odd, or a bit unusual. The law???s legitimate role is to prevent us from making harmful decisions, or decisions that are going to impact badly on the future child. Now, it might seem obvious again to say that it???s a bad outcome for the child to be born deaf, until we consider what the alternative was for that child. There???s a big difference between making a baby deaf and making a deaf baby. For the child that is created or chosen in this case with deafness, the option of being hearing just wasn???t on the table. The only alternative was never to be born at all, and for the parents to have had a hearing sibling instead. Now, that being the case, I just can???t understand who this new law is intended to protect.  </p>
<p><strong>Rhun ap Iowerth</strong> ??? Do you have an idea, Dr Middleton? </p>
<p><strong>Dr Anna Middleton</strong> ??? Well at the moment, cases are considered on a case-by-case basis and I feel there???s no need for the law to come into this. I don???t feel that the Government needs to have a say on this. These are very private and personal decisions, made by individual couples. No couple would undergo this process lightly ??? it???s very difficult, it???s very expensive, it???s hard to get, it???s emotionally very draining and you???d have to be very clear on what your outcome was going to be before you embarked on the journey. </p>
<p><strong>Rhun ap Iowerth</strong> ??? For most people though, it would be hard to fathom why a parent would want this choice.  </p>
<p><strong>Dr Anna Middleton</strong> ??? Yeah, um, and there are&#8230; In the research that I have done, I have met many deaf people who perhaps have several generations of deafness in their family, they use sign language as their first language, they???re very positive and proud to be deaf and actually, they just don???t mind having deaf children. As far as actively using genetics to enable then to have deaf children, well very, very few people would be interested in that. </p>
<p><strong>Rhun ap Iowerth</strong> ??? How unusual is this, Dr Gavaghan? Or are there other areas that could be affected by similar ethical questions? </p>
<p><strong>Dr Colin Gavaghan</strong> ??? There are indeed. I mean, another clause within the new legislation, presuming it becomes law, would prevent parents making decisions on this basis on the grounds of sex, and there have been one or two cases where parents have specifically wanted to use this technology to ensure that their next child is either a boy or a girl. There was a couple in Scotland who already had 4 boys, their little girl died in an accident and they wanted to, as they saw it, restore the female dimension to their family. Now again, this is an area in which it could be argued that most of us might not empathise with that choice, they might not want to make the same choice, but we have to ask ourselves, does the Government have a legitimate reason to interfere with that choice? Would anyone be hurt if they actually made it? However odd we may find it, sometimes we might just have to accept that it???s not really our business.  </p>
<p><strong>Rhun ap Iowerth </strong>??? Well, thank you both for talking to us this morning. That was Dr Colin Gavaghan, author of <em>Defending the Genetic Supermarket</em>. Dr Anna Middleton, thank you too ??? from the Genetics department of Cardiff University.</p>
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		<item>
		<title>Letter from WFD to the Department of Health</title>
		<link>http://stopeugenics.org/2008/04/08/letter-from-wfd-to-the-department-of-health/</link>
		<comments>http://stopeugenics.org/2008/04/08/letter-from-wfd-to-the-department-of-health/#comments</comments>
		<pubDate>Tue, 08 Apr 2008 19:30:19 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Department of Health]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=107</guid>
		<description><![CDATA[The World Federation of the Deaf (WFD) wrote a letter to the Department of Health over their concerns over section 14(4)(9) of the Human Fertilisation and Embryology Bill (HFEB).  A copy of this letter can be found here [PDF].
It is good to get international support, and to get a wider frame of reference to [...]]]></description>
			<content:encoded><![CDATA[<p>The <a href="http://www.wfdeaf.org/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.wfdeaf.org');">World Federation of the Deaf (WFD)</a> wrote a letter to the Department of Health over their concerns over section 14(4)(9) of the Human Fertilisation and Embryology Bill (HFEB).  <a href="http://stopeugenics.org/files/2008/04/ukbill-letter1.pdf" target="blank">A copy of this letter can be found here [PDF]</a>.</p>
<p>It is good to get international support, and to get a wider frame of reference to the implications of this proposed legislation.</p>
]]></content:encoded>
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		<item>
		<title>Department of Health response to 19 March meeting</title>
		<link>http://stopeugenics.org/2008/04/08/department-of-health-response-to-19-march-meeting/</link>
		<comments>http://stopeugenics.org/2008/04/08/department-of-health-response-to-19-march-meeting/#comments</comments>
		<pubDate>Tue, 08 Apr 2008 10:58:51 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Department of Health]]></category>

		<category><![CDATA[deaf]]></category>

		<category><![CDATA[HFE-Bill]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=105</guid>
		<description><![CDATA[On 19 March representatives met the HFE Bill team at the Department of Health.  The summary of this meeting can be found here in English and BSL.
The Department of Health has since formally responded to points raised, in English here [PDF] and a BSL translation:
[See post to watch Flash video]
]]></description>
			<content:encoded><![CDATA[<p>On 19 March representatives met the HFE Bill team at the Department of Health.  The summary of this meeting <a href="http://stopeugenics.org/2008/04/01/summary-of-meeting-at-the-department-of-health/" target="blank">can be found here in English and BSL</a>.</p>
<p>The Department of Health has since formally responded to points raised, in <a href="http://stopeugenics.org/files/2008/04/dh-letter-to-anna-middleton-response-to-meeting.pdf" target="blank">English here [PDF]</a> and a BSL translation:</p>
<p><center>[See post to watch Flash video]</center></p>
]]></content:encoded>
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		<item>
		<title>Summary of the meeting at the Department of Health</title>
		<link>http://stopeugenics.org/2008/04/01/summary-of-meeting-at-the-department-of-health/</link>
		<comments>http://stopeugenics.org/2008/04/01/summary-of-meeting-at-the-department-of-health/#comments</comments>
		<pubDate>Tue, 01 Apr 2008 14:36:03 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Department of Health]]></category>

		<category><![CDATA[Law &amp; Policy]]></category>

		<category><![CDATA[british deaf association]]></category>

		<category><![CDATA[clause 14(4)(9)]]></category>

		<category><![CDATA[deaf]]></category>

		<category><![CDATA[deparment of health]]></category>

		<category><![CDATA[hfeb]]></category>

		<category><![CDATA[progress educational trust]]></category>

		<category><![CDATA[stop eugenics]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/?p=101</guid>
		<description><![CDATA[Summary of meeting at the Department of Health to discuss Clause 14(4)(9) Human Fertilisation and Embryology Bill.  Attendees, genetics counsellors, Progress Educational Trust, British Deaf Association, Stop Eugenics, Department of Health Bill Team]]></description>
			<content:encoded><![CDATA[<p>On the 19 March 2008 representatives of <a href="http://stopeugenics.org/" target="blank">Stop Eugenics</a>, the <a href="http://www.signcommunity.org.uk" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.signcommunity.org.uk');">BDA</a>, the <a href="http://www.progress.org.uk/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.progress.org.uk');">Progress Educational Trust</a> and two individual genetics counsellors met with the HFE Bill Team at the <a href="http://www.dh.gov.uk/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.dh.gov.uk');">Department of Health</a>.</p>
<p>The purpose of the meeting was to discuss our concerns over Clause 14(4)(9) and relevant Explanatory Notes of the <a href="http://services.parliament.uk/bills/2007-08/humanfertilisationandembryology.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/services.parliament.uk');">Human Fertilisation and Embryology Bill</a> (HFEB).</p>
<p>A summary of the meeting can be found <a href="http://stopeugenics.org/files/2008/04/agreed-summary-dh-meeting-2703.pdf" target="blank"> in English here [PDF]</a> and in British Sign Language:</p>
<p><center>[See post to watch Flash video]</center></p>
<p>The Department of Health will be releasing their response to this meeting in the near future.</p>
<p>Stop Eugenics would like to thank all those involved for making this meeting happen.</p>
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		<title>Transcript: CBC Radio&#8217;s As It Happens</title>
		<link>http://stopeugenics.org/2008/03/18/transcript-cbc-radios-as-it-happens/</link>
		<comments>http://stopeugenics.org/2008/03/18/transcript-cbc-radios-as-it-happens/#comments</comments>
		<pubDate>Tue, 18 Mar 2008 14:20:41 +0000</pubDate>
		<dc:creator>Jen Dodds</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/2008/03/18/transcript-cbc-radios-as-it-happens/</guid>
		<description><![CDATA[The issue has now reached Canada - CBC Radio interviewed Tomato Lichy for the As It Happens programme, which was broadcast last night. Listen here (for a limited time).  Many thanks to Mary Therese Durr for transcribing it below:
Title: A deaf couple in England wants a second deaf child but the government won???t hear [...]]]></description>
			<content:encoded><![CDATA[<p>The issue has now reached Canada - <a href="http://www.cbc.ca/" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.cbc.ca');">CBC Radio</a> interviewed Tomato Lichy for the <a href="http://www.cbc.ca/asithappens/about/index.html" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.cbc.ca');">As It Happens</a> programme, which was broadcast last night. Listen <a href="http://www.cbc.ca/asithappens/latestshow.html" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.cbc.ca');">here</a> (for a limited time).  Many thanks to Mary Therese Durr for transcribing it below:</p>
<p><strong>Title: A deaf couple in England wants a second deaf child but the government won???t hear of it.</strong></p>
<p><strong>Introduction</strong>: Tomato Lichy and his partner, Paula Garfield, are trying for another baby, but trying for this baby has put them in an unusual fight. Both parents were born with congenital deafness. Their first child deaf is deaf and now they want their second child to be deaf as well. Which is a possibility, thanks to modern genetic testing and In Vitro Fertilization (IVF).  But their plan has sparked a new debate over embryo selection, one that boils down to whether or not deafness is in fact a disability. In the end the<br />
decision may not be theirs. The new British government bill, scheduled to go through this spring, would block any attempt to use modern medical techniques to ensure a child is deaf.</p>
<p>We reached Tomato Lichy at his home in London England. The voice you will be hearing is that of his interpreter, Rob Troy. Another interpreter, Shelia Gleason, is also helping with the signing.</p>
<p><strong>Interviewer</strong>: Mr. Lichy why do you want your child to be deaf?</p>
<p><strong> Mr. Lichy</strong>: The possibility has really come about because my partner will possibly have to have IVF. And really it is not a question of wanting the baby to be deaf; it is not the case that we want our baby to be deaf; it is more the case that the deaf embryo that may be rejected for a hearing embryo. So really we kind of feel that it is very important that the government does not continue down this path. Because it is in a sense saying that deaf people are not on equal terms with hearing people. And I think it is going to cause a lot of problems if you look at the family unit with deaf parents and a deaf child, if you know, this embryo is a hearing embryo, or what would be considered a normal embryo, is inserted and birth is given as normal.<br />
<script>- D(["mb","\u003cbr\u003e\n And the message was what is that going to do to her very identity.\nThat sibling that brother, that sister identity. And that confidence,\nit can be very detrimental. \u003cbr\u003e\nIf you are to have a child through in vitro fertilization, are you\ngoing to choose to have an embryo planted that you know to be a deaf\nchild?\u003cbr\u003e\nIf the new law is passed, then there won???t be a choose. You know, we\nintend to have the same rights as hearing people. Hearing people can\ndecide to reject that deaf embryo and can say we would like our child\nto be hearing. A deaf person does not have that choice. So therefore we\ndo not have the same rights as hearing people. As a deaf person I can\nnot say ???I would like to choice that deaf embryo???. it would\nautomatically be taken away from me, that choice. The gov???t has taught\nvery much in this country about human rights, about disability rights,\nand equality rights, and that process it has been, you know, fantastic\nover the last through years. There has been a real growth and\nunderstanding of the importance of equality within these areas. But\nactually this new gov???t law seems to be a big step back wards in the\nvery fact that they???ve taken away that process almost. That processes\nseems to be going through reverse that process seems to be taking away\nthe rights that we have, to have a deaf child.\u003cbr\u003e\nInterviewer: But if you are able to make that choice among the embryo\nthat are fertilized, will you choice an embryo that you know to be\ndeaf? Is that something that, that is a desire on your part?\u003cbr\u003e\nMr. Leachy: I wouldn???t choice to create by making anything at all. It\nis already there. The most important thing for me and the most\nimportant at the moment, seems to be the fact that I want to have the\nright to have that choice.\u003cbr\u003e\nThe same choice that hearing people have. \u003cbr\u003e\nIf hearing people, if deaf people have the same rights, that???s fine. It\nis not actually a question about the choice itself. But if hearing\npeople can have the choice to say ???I would like a hearing embryo??? I\nmean a deaf person does not have that choice then therefore there is an\ninequality there. If none of us have that choice then fine, if we both\nhave that choice then it is also fine. ",1] );  //--></script> Later on we will have to explain to that deaf child that, well, your deaf brother, your sister is hearing. And that is a result, you know, not of natural causes, but actually it is a result of the government deciding that your deaf brother or sister was not an equal, and was therefore got rid of.  And the message was, what is that going to do to her very identity? That sibling; that brother, that sister identity. And that confidence, it can be very detrimental.</p>
<p><strong>Interviewer</strong>: If you are to have a child through In Vitro Fertilization, are you going to choose to have an embryo planted that you know to be a deaf child?</p>
<p><strong> Mr. Lichy</strong>: If the new law is passed, then there won???t be a choice. You know, we intend to have the same rights as hearing people. Hearing people can decide to reject that deaf embryo and can say &#8216;we would like our child to be hearing&#8217;. A deaf person does not have that choice. So therefore we do not have the same rights as hearing people. As a deaf person I can not say ???I would like to choose that deaf embryo???. It would automatically be taken away from me, that choice. The government has taught very much in this country about human rights, about disability rights, and equality rights, and that process it has been, you know, fantastic over the last through years. There has been a real growth and understanding of the importance of equality within these areas. But actually this new government law seems to be a big step backwards in the very fact that they???ve taken away that process almost. That processes seems to be going through reverse that process seems to be taking away the rights that we have, to have a deaf child.</p>
<p><strong>Interviewer</strong>: But if you are able to make that choice among the embryo that are fertilized, will you choice an embryo that you know to be deaf? Is that something that, that is a desire on your part?</p>
<p><strong> Mr. Lichy</strong><script> D(["mb","\u003cbr\u003e\nBut at the moment what I don???t like, and what I am opposed is that\nimbalance.\u003cbr\u003e\nInterviewer: If I understand correctly, the fight you have against this\nbill, is not necessarily a fight, to be able to have a deaf child.\nYou???re fighting the bill, just simply on the grounds that it???s\ndiscriminatory.\u003cbr\u003e\nMr. Leachy: Well yeah, I mean I do feel I am being discriminated\nagainst. And I think the deaf population and the deaf community is.\u003cbr\u003e\nAnd I think it is an attack on disabled people. It???s about setting\nsomething up for the future. If we are going to make progression, when\nit comes to equality rights and human rights, it is a very slippery\nslope, you know, at the moment it will affect a few people, it will\naffect the deaf community, and pretty much that is about it. But\nactually it could be a slippery slope and that gap could be widening.\nUmm to things in the future, which is yet, we don???t know. And that is\nalso a concern that I have, that it will actually lose control. \u003cbr\u003e\nAnd it is very interesting, who makes these choices? Is it the gov???t?\nwho in gov???t is making this decision?\u003cbr\u003e\nInterviewer: But do you want to make that choice for your child?  How\ndo you know the child you have will want to be deaf?\u003cbr\u003e\nMr. Leachy: It is not about wanting to be deaf , that child is already\ndeaf, he is already there, that will be his identity. You know if I\nchose a different embryo, for example, you know hearing, that deaf\nchild would never have been born, that person would never have been\nborn. So it is not a case of wanting to be deaf, interesting the gov???ts\nlanguage, and say ???oh it???s better that it be hearing???, but actually\nwhat that statement is giving out is that it is better that deaf people\nweren???t ever born. \u003cbr\u003e\nInterviewer: The royal national institute for deaf people doesn???t\nsupport this idea. They say that if there???s a choice that the choice\nshould be the embryo that doesn???t have the deaf gene, that the embryo\nthat would produce a hearing child is the one that should be implanted\nand not the one with a gene that might have deafness in it. How do you\nrespond to that?",1] );  //--></script>: I wouldn???t choose to create by making anything at all. It is already there. The most important thing for me and the most important at the moment, seems to be the fact that I want to have the right to have that choice. The same choice that hearing people have. If hearing people, if deaf people have the same rights, that???s fine. It is not actually a question about the choice itself. But if hearing people can have the choice to say ???I would like a hearing embryo??? I mean a deaf person does not have that choice then therefore there is an inequality there. If none of us have that choice then fine, if we both have that choice then it is also fine.  But at the moment what I don???t like, and what I am opposed is that imbalance.</p>
<p><strong>Interviewer</strong>: If I understand correctly, the fight you have against this bill, is not necessarily a fight, to be able to have a deaf child. You???re fighting the bill, just simply on the grounds that it???s discriminatory.</p>
<p><strong> Mr. Lichy</strong>: Well yeah, I mean I do feel I am being discriminated against. And I think the deaf population and the deaf community is. And I think it is an attack on disabled people. It???s about setting something up for the future. If we are going to make progression, when it comes to equality rights and human rights, it is a very slippery slope, you know, at the moment it will affect a few people, it will affect the deaf community, and pretty much that is about it. But actually it could be a slippery slope and that gap could be widening, umm, to things in the future, which is yet, we don???t know. And that is also a concern that I have, that it will actually lose control. And it is very interesting, who makes these choices? Is it the government?  Who in government is making this decision?</p>
<p><strong> Interviewer</strong>: But do you want to make that choice for your child?  How do you know the child you have will want to be deaf?</p>
<p><strong> Mr. Lichy</strong>: It is not about wanting to be deaf , that child is already deaf, he is already there, that will be his identity. You know if I chose a different embryo, for example, you know hearing, that deaf child would never have been born, that person would never have been born. So it is not a case of wanting to be deaf, interesting the government&#8217;s language, and say ???oh it???s better that it be hearing???, but actually what that statement is giving out is that it is better that deaf people weren???t ever born.</p>
<p><strong> Interviewer</strong>: The Royal National Institute for Deaf people doesn???t support this idea. They say that if there???s a choice that the choice should be the embryo that doesn???t have the deaf gene, that the embryo that would produce a hearing child is the one that should be implanted and not the one with a gene that might have deafness in it. How do you respond to that?</p>
<p><script>-- D(["mb","\u003cbr\u003e\nMr. Leachy: Well it is very strange because 2 months ago, the RNID\nannounced that deaf person should have the right to choice their baby,\nand that was only what, 2 months ago now. And that really matched,\ntheir goal and their aim to support deaf people and deaf people???s\nchoice.  And later, 2 months later, this view seems to have changed. \u003cbr\u003e\nInterviewer: Both you and your partner are deaf, you have a baby girl\nwho is born deaf,\u003cbr\u003e\nwhat will you do if this bill passes, will you try for natural child\nbirth and take your chances? Will you go the route, because your\npartner is over 40 now, you were saying that you may go the route of In\nVitro Fertilization, what are your plans, what will you and your\npartner going to do?\u003cbr\u003e\nMr. Leachy: We will continue trying for natural pregnancy. But we\nreally can???t get involved within this process,  which involves\nrejecting a deaf embryo. This is just very wrong, everything within me\ninherently just says this is wrong. So this is certainly a process I,\nwe just can not be involved in.\u003cbr\u003e\nInterviewer: Mr. Leachy I want to thank you very much for speaking with\nus. And I would like to also thank Rob Troy for giving us the answers\nand a Shelia Gleason I understand has been doing the signing. \u003cbr\u003e\nThank you very much indeed. Ok, by by now.\u003cbr\u003e\nConclusion: Tomato Leachy  is a deaf parent who wants to have a second\ndeaf child with his partner Paula Gartfield, he spoke to us through his\ninterpreter Rob Troy from his home in London England. \u003cbr\u003e",1] );  //--></script><strong>Mr. Lichy</strong>: Well it is very strange because 2 months ago, the RNID announced that deaf person should have the right to choose their baby, and that was only what, 2 months ago now. And that really matched, their goal and their aim to support deaf people and deaf people???s choice.  And later, 2 months later, this view seems to have changed.</p>
<p><strong> Interviewer</strong>: Both you and your partner are deaf, you have a baby girl who is born deaf, what will you do if this bill passes, will you try for natural child birth and take your chances? Will you go the route, because your partner is over 40 now, you were saying that you may go the route of In Vitro Fertilization, what are your plans, what will you and your partner going to do?</p>
<p><strong>Mr. Lichy</strong>: We will continue trying for natural pregnancy. But we really can???t get involved within this process,  which involves rejecting a deaf embryo. This is just very wrong, everything within me inherently just says this is wrong. So this is certainly a process I, we just can not be involved in.</p>
<p><strong> Interviewer</strong>: Mr. Lichy I want to thank you very much for speaking with us. And I would like to also thank Rob Troy for giving us the answers and a Shelia Gleason, I understand, has been doing the signing.<br />
Thank you very much indeed. OK, bye bye now.</p>
<p><strong> Conclusion</strong>: Tomato Lichy  is a deaf parent who wants to have a second deaf child with his partner Paula Garfield, he spoke to us through his interpreter Rob Troy from his home in London England.<br />
<script><!-- D(["mb","\u003cdiv\u003e\u003cdiv class\u003dea\u003e\u003cspan id\u003de_118c1ec9995be0f1_1\u003e- Show quoted text -\u003c/span\u003e\u003c/div\u003e\u003cspan class\u003de id\u003dq_118c1ec9995be0f1_1\u003e\n\u003cbr\u003e\n\u003cbr\u003e\ngeorgia mitchell wrote:\n\u003cblockquote type\u003d\"cite\"\u003e\n  \u003cdiv\u003ejust got this msg now..it\u0026#39;s Tues am..yes go ahead...I just\nclicked on the As it Happens and saw/heard that its there but you are\none step ahead of me..go for it.  I was watching for it but u beat me\nto the punch...\u003c/div\u003e\n  \u003cdiv\u003e \u003c/div\u003e\n  \u003cdiv\u003eI\u0026#39;ll for sure help in future.\u003c/div\u003e\n  \u003cdiv\u003eGeo\u003c/div\u003e\n  \u003cp\u003e \u003c/p\u003e\n  \u003chr size\u003d\"1\"\u003eNever miss a thing. \u003ca href\u003d\"http://us.rd.yahoo.com/evt\u003d51438/*http://www.yahoo.com/r/hs\" target\u003d\"_blank\" onclick\u003d\"return top.js.OpenExtLink(window,event,this)\"\u003e\nMake Yahoo your homepage.\u003c/a\u003e\n\u003c/blockquote\u003e\n\u003c/span\u003e\u003c/div\u003e",1] ); D(["mb","\u003c/div\u003e\n\n",0] );  //--></script></p>
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			<wfw:commentRss>http://stopeugenics.org/2008/03/18/transcript-cbc-radios-as-it-happens/feed/</wfw:commentRss>
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		<item>
		<title>Deaf People &#038; Genetics: Media Coverage, Part 2</title>
		<link>http://stopeugenics.org/2008/03/17/deaf-people-genetics-media-coverage-part-2/</link>
		<comments>http://stopeugenics.org/2008/03/17/deaf-people-genetics-media-coverage-part-2/#comments</comments>
		<pubDate>Mon, 17 Mar 2008 14:17:02 +0000</pubDate>
		<dc:creator>Alison Bryan</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<category><![CDATA[bbc]]></category>

		<category><![CDATA[blogs]]></category>

		<category><![CDATA[eugenics]]></category>

		<category><![CDATA[genetics]]></category>

		<category><![CDATA[ivf]]></category>

		<category><![CDATA[media]]></category>

		<category><![CDATA[newpapers]]></category>

		<category><![CDATA[radio]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/2008/03/17/deaf-people-genetics-media-coverage-part-2/</guid>
		<description><![CDATA[Following this post, here&#8217;s the second summary of coverage on this subject (from the past week):
Radio:
BBC Radio 5 Live:  The Victoria Derbyshire Show, Transcript here, Discussion here and here
BBC Radio 4:  The Moral Maze, transcript and online discussion
BBC World Service:  Have Your Say, transcript, discussion, and transcript comment
BBC Radio 4:  Today, [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://stopeugenics.org/2008/03/11/deaf-people-genetics-media-coverage/" target="_blank">Following this post</a>, here&#8217;s the second summary of coverage on this subject (from the past week):</p>
<p><strong><u>Radio</u>:</strong></p>
<p>BBC Radio 5 Live:  The <a href="http://www.bbc.co.uk/fivelive/programmes/morning.shtml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">Victoria Derbyshire Show</a>, <a href="http://stopeugenics.org/2008/03/14/transcript-bbc-radio-5-lives-the-victoria-derbyshire-show/" target="blank">Transcript here</a>, Discussion <a href="http://www.bbc.co.uk/dna/mbfivelive/F2148564?thread=5202577" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">here</a> and <a href="http://www.bbc.co.uk/blogs/victoriaderbyshire/2008/03/the_right_to_a_deaf_child.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">here</a><br />
BBC Radio 4:  <a href="http://www.bbc.co.uk/radio4/religion/moralmaze.shtml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">The Moral Maze</a>, <a href="http://www.bbc.co.uk/radio4/religion/moralmaze_transcript.shtml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">transcript</a> and <a href="http://www.bbc.co.uk/dna/mbreligion/F2213240?thread=5203925" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">online discussion</a><br />
BBC World Service:  <a href="http://www.bbc.co.uk/worldservice/programmes/hys.shtml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">Have Your Say</a>, <a href="http://stopeugenics.org/2008/03/12/transcript-bbc-world-service-have-your-say/" target="blank">transcript</a>, <a href="http://worldhaveyoursay.wordpress.com/2008/03/12/is-being-deaf-or-blind-a-disability/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/worldhaveyoursay.wordpress.com');">discussion</a>, and <a href="http://worldhaveyoursay.wordpress.com/2008/03/13/transcript-of-deafness-debate/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/worldhaveyoursay.wordpress.com');">transcript comment</a><br />
BBC Radio 4:  <a href="http://www.bbc.co.uk/radio4/today/listenagain/tuesday.shtml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">Today, Lord Winston &amp; Professor Jones</a>, <a href="http://stopeugenics.org/2008/03/12/transcript-bbc-radio-4-today-lord-winston-professor-jones/" target="blank">transcript</a><br />
<strong><u></u></strong></p>
<p><strong><u>Television:</u></strong></p>
<p>BBC Breakfast: <a href="http://stopeugenics.org/2008/03/12/bbc-breakfast-interview-with-tomato-lichy-and-paula-garfield/" target="blank">Interview with Tomato Lichy and Paula Garfield</a><br />
BBC Breakfast:  Interview with Jackie Ballard (link to follow)<br />
Scottish Television:  <a href="http://www.stv.tv/content/tv/thefivethirtyshow" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.stv.tv');">The Five Thirty Show</a>, <a href="http://stopeugenics.org/2008/03/14/transcript-scottish-televisions-the-five-thirty-show/" target="blank">Transcript here</a><br />
BBC News:  <a href="http://news.bbc.co.uk/1/hi/health/7289786.stm" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/news.bbc.co.uk');">Catholic pressure on fertility bill</a><br />
ABC News:  <a href="http://www.abcnews.go.com/Health/story?id=4464873&#038;page=1" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.abcnews.go.com');">No to &#8216;Deaf&#8217; Embryos</a></p>
<p><u><strong><u>Newspapers</u>:</strong></u></p>
<p>The Guardian:  <a href="http://stopeugenics.org/wp-admin/Hearing%20Beethoven" target="_blank">Letter from Jackie Scully:  Hearing Beethoven</a><br />
The Herald:  <a href="http://www.theherald.co.uk/features/letters/display.var.2119188.0.Emotional_squeamishness_over_deaf_baby.php" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.theherald.co.uk');">Emotional squeamishness over deaf baby</a><br />
The Times:  <a href="http://timesonline.typepad.com/comment/2008/03/deafness-and-di.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/timesonline.typepad.com');">Deafness and disability: A wonderful response</a><br />
Catholic News Agency:  <a href="http://www.catholicnewsagency.com/new.php?n=12060" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.catholicnewsagency.com');">Deaf couple wants to use genetic selection to have a deaf child</a><br />
The Peninsula (Qatar):  <a href="http://www.thepeninsulaqatar.com/commentary/commentaryother.asp?file=marchcommentary422008.xml" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.thepeninsulaqatar.com');">Deliberately choosing a deaf child is criminal</a><br />
The Herald:  <a href="http://www.theherald.co.uk/features/letters/display.var.2123850.0.Let_parents_go_ahead_and_have_a_deaf_child.php" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.theherald.co.uk');">Let parents go ahead and have a deaf child</a><br />
The Sun:  <a href="http://www.thesun.co.uk/sol/homepage/news/columnists/blunkett/article692146.ece" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.thesun.co.uk');">David Blunkett - Wanting a deaf child is daft</a></p>
<p><u><strong><u>Blogs</u>:</strong></u></p>
<p>Dr Steve Emery:  <a href="http://drstevendemery.wordpress.com/2008/03/14/the-wise-young-guy-and-the-zombies/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/drstevendemery.wordpress.com');">The wise young guy and the zombies</a><br />
Deaf DC Blog:  <a href="http://www.deafdc.com/blog/teresa-blankmeyer-burke/2008-03-17/motherhood-guns-and-open-futures/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.deafdc.com');">Teresa Blankmeyer Burke, Motherhood, Guns, and Open Futures</a><br />
bioethics.com:  <a href="http://bioethicsnews.com/2008/03/12/op-ed-choosing-a-deaf-baby-is-criminal/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/bioethicsnews.com');">Choosing a Deaf Baby is Criminal</a><br />
Mike Gulliver&#8217;s Blog:   <a href="http://mikegulliver.wordpress.com/2008/03/12/a-plea-to-the-press-on-clause-14-hfae-bill/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/mikegulliver.wordpress.com');">A plea to the press on Clause 14 (HFAE Bill)</a><br />
BioEdge:  <a href="http://www.bioedge.org/index.php/bioethics/bioethics_article/british_activists_call_for_creation_of_deaf_embryos/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bioedge.org');">British activists call for creation of deaf embryos</a><br />
Paul Humphreys&#8217;s Weblog:  <a href="http://blogs.sun.com/paulhu/entry/computus_the_way_we_decide" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/blogs.sun.com');">Computus - the way we decide when Easter is..</a><br />
Geek of All Trades:  <a href="http://geekofalltrades.wordpress.com/2008/03/12/youre-deaf-not-retarded/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/geekofalltrades.wordpress.com');">You???re deaf, not retarded.</a><br />
At the Rim:  <a href="http://attherimmm.blogspot.com/2008/03/bbc-interview.html%22" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/attherimmm.blogspot.com');">The BBC Interview</a><br />
The Coterie of the Zombies:  <a href="http://zombiecoterie.blogspot.com/2008/03/right-to-remain-silent.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/zombiecoterie.blogspot.com');">The Right To Remain Silent</a><br />
The Coterie of the Zombies:  <a href="http://zombiecoterie.blogspot.com/2008/03/spunk-whores-get-their-come-uppance.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/zombiecoterie.blogspot.com');">spunk whores get their come-uppance</a><br />
The Gray Monk:  <a href="http://graymonk.mu.nu/archives/2008/03/the_right_to_ch.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/graymonk.mu.nu');">The right to choose?</a><br />
Ye Goblyn Queenne:  <a href="http://purifire.blogspot.com/2008/03/speak-up-please-you-are-deaf-we-cant.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/purifire.blogspot.com');">Speak up please. You are deaf. We can&#8217;t hear you.</a><br />
OlyBlog:  <a href="http://olyblog.net/screening-embryos-blindness-deafness" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/olyblog.net');">Screening Embryos for Blindness / Deafness</a><br />
Liberal Burblings:  <a href="http://paulwalter.blogspot.com/2008/03/deaf-couple-and-ivf-angels-on-head-of.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/paulwalter.blogspot.com');">Deaf couple and IVF - angels on the head of a pin?</a><br />
Media Dis&amp;Dat:  <a href="http://media-dis-n-dat.blogspot.com/2008/03/controversial-new-british-law.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/media-dis-n-dat.blogspot.com');">Controversial new British law challenged by deaf community</a><br />
Bede&#8217;s Journal:  <a href="http://bedejournal.blogspot.com/2008/03/are-deaf-people-disabled.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/bedejournal.blogspot.com');">Are Deaf People Disabled?</a><br />
As in the days of Noah:  <a href="http://asinthedaysofnoah.blogspot.com/2008/03/culture-of-deathcreating-deaf-child-is.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/asinthedaysofnoah.blogspot.com');">CULTURE of DEATH:&#8217;Creating a deaf child IS immoral and no parent should be allowed to choose this for their child&#8217;</a><br />
123 Creation:  <a href="http://123recreation.info/?p=4995" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/123recreation.info');">Props to John Humphries on the deaf issue</a><br />
This side of the house:  <a href="http://thissideofthehouse.blogspot.com/2008/03/deaf-parents-chosing-deaf-babies.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/thissideofthehouse.blogspot.com');">Deaf parents chosing deaf babies</a><br />
Remembering the Ability in Disability:  <a href="http://samedifference1.wordpress.com/2008/03/12/are-they-deaf-or-just-disabled/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/samedifference1.wordpress.com');">Are they deaf? or just DisAbled?</a><br />
John Smeaton, SPUC Director:  <a href="http://spuc-director.blogspot.com/2008/03/moral-maze-created-by-ivf.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/spuc-director.blogspot.com');">The moral maze created by IVF</a><br />
The Deaf Blog:  <a href="http://www.thedeafblog.co.uk/2008/03/the_right_to_be_deaf.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.thedeafblog.co.uk');">The Right to be Deaf</a><br />
Erasmus28:  <a href="http://erasmus28.wordpress.com/2008/03/13/radio-4-the-moral-maze-ivf/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/erasmus28.wordpress.com');">Radio 4 - The Moral Maze - IVF</a><br />
Centre Right:  <a href="http://conservativehome.blogs.com/centreright/2008/03/the-disgraceful.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/conservativehome.blogs.com');">The disgraceful desire to inflict a disability on babies</a><br />
Catholic News 24/7:  <a href="http://www.catholicnews247.com/deaf-couple-wants-to-use-genetic-selection-to-have-a-deaf-child/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.catholicnews247.com');">Deaf couple wants to use genetic selection to have a deaf child</a><br />
Vixen&#8217;s Diary:  <a href="http://scottish-vixen.livejournal.com/8463.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/scottish-vixen.livejournal.com');">The Right to be Deaf?</a><br />
Carlos Online:  <a href="http://carlonline.blogspot.com/2008/03/deafness-disability-and-ivf.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/carlonline.blogspot.com');">Deafness, Disability and IVF</a><br />
Daily Grind:  <a href="http://www.simond.net/2008/03/13/choosing-childs-genetic-makeup/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.simond.net');">Choosing Child???s Genetic Makeup</a><br />
Parent Dish:  <a href="http://www.parentdish.com/2008/03/15/should-uk-couple-be-allowed-to-choose-a-deaf-embryo/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.parentdish.com');">Should UK couple be allowed to choose a deaf embryo?</a><br />
Mike Gulliver???s Blog:  <a href="http://mikegulliver.wordpress.com/2008/03/13/the-lie-of-of-course-deaf-is-wrong/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/mikegulliver.wordpress.com');">The lie of ???of course deaf is wrong???</a><br />
Berke Outspoken:  <a href="http://berkeoutspoken.blogspot.com/2008/03/deaf-ivf-embryos-natural-deaf-babies.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/berkeoutspoken.blogspot.com');">Deaf IVF Embryos, Natural Deaf Babies, and Choices</a><br />
Our Future Thoughts: <a href="http://ourfuturethoughts.blogspot.com/2008/03/having-deaf-child-on-purpose.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/ourfuturethoughts.blogspot.com');">Having a Deaf Child - On Purpose</a><br />
Rob&#8217;s Blog Space:  <a href="http://moler57.blogspot.com/2008/03/is-deafness-dissability.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/moler57.blogspot.com');">Is deafness a Dissability?</a><br />
All The Young Dudes:  <a href="http://alltheyoungdudes.radio666fm.com/2008/03/15/media-watch-tidish-boom/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/alltheyoungdudes.radio666fm.com');">Media Watch: Tidish Boom!</a><br />
Mulier Fortis:  <a href="http://mulier-fortis.blogspot.com/2008/03/designer-babies.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/mulier-fortis.blogspot.com');">Designer Babies &#8230;?</a><br />
iblog so you don&#8217;t have to:  <a href="http://www.iblog.co.uk/2008/03/14/should-deaf-parents-be-able-to-choose-deaf-children/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.iblog.co.uk');">Should deaf parents be able to choose deaf children?</a><br />
disability:  <a href="http://disability.reviewedhere.info/2008/03/14/should-deaf-parents-be-able-to-choose-deaf-children/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/disability.reviewedhere.info');">Should deaf parents be able to choose deaf children?</a><br />
spEak You???re bRanes:  <a href="http://ifyoulikeitsomuchwhydontyougolivethere.com/2008/03/14/gingervitis/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/ifyoulikeitsomuchwhydontyougolivethere.com');">Gingervitis</a><br />
All The Young Dudes:  <a href="http://alltheyoungdudes.radio666fm.com/2008/03/14/transcript-out-in-the-middle-of-whoop-whoop%e2%80%99s-world-service-6pm-march-12th-2008/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/alltheyoungdudes.radio666fm.com');">Transcript: Out In The Middle Of Whoop, Whoop???s World Service, 6pm. March 12th 2008</a><br />
Freemania:  <a href="http://viva-freemania.blogspot.com/2008/03/deafness-and-availability-of-options.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/viva-freemania.blogspot.com');">Deafness and the availability of options</a><br />
Alejandro:  <a href="http://pime-89.blogspot.com/2008/03/deafness-is-disablitiy.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/pime-89.blogspot.com');">Deafness is a Disablitiy</a><br />
Liberal Conspiracy:  <a href="http://www.liberalconspiracy.org/2008/03/14/are-they-deaf-or-just-disabled/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.liberalconspiracy.org');">Are they deaf? Or just DisAbled?</a><br />
Defying Clarity:  <a href="http://defyingclarity.wordpress.com/2008/03/16/deaf-british-babies-morally-repugnant/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/defyingclarity.wordpress.com');">Deaf British Babies: Morally Repugnant?</a><br />
Butterfly, Like Me&#8230;Deaf&#8217;s v/blog:  <a href="http://aslvblog.blogspot.com/2008/03/choosing-deaf-baby-is-criminal-wrote.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/aslvblog.blogspot.com');">Choosing a Deaf baby is criminal&#8221; wrote Daniel Finkelstein!!</a><br />
All The Young Dudes:  <a href="http://alltheyoungdudes.radio666fm.com/2008/03/17/the-human-fertilisation-and-embryology-bill-a-message-from-god/" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/alltheyoungdudes.radio666fm.com');">The Human Fertilisation and Embryology Bill: A Message From G.O.D</a><br />
The Human Future:  <a href="http://thehumanfuture.blogspot.com/2008/03/embryonic-disaster-in-uk.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/thehumanfuture.blogspot.com');">An Embryonic Disaster in the U.K.</a></p>
<p><u><strong><u>Forums</u>:<br />
</strong></u><br />
Games Radar:  <a href="http://forum.gamesradar.com/viewtopic.php?t=116359" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/forum.gamesradar.com');">&#8220;Is it wrong to try and have a deaf child?&#8221;</a><br />
Aspices for Freedom:  <a href="http://www.aspiesforfreedom.com/showthread.php?tid=4038" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.aspiesforfreedom.com');">Doctors want to screen out embryos with autism</a><br />
Witte zwanen, zwarte zwanen:  <a href="http://naarengelandvaren.blogspot.com/2008/03/voor-god-spelen-of-toch-beter-een.html" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/naarengelandvaren.blogspot.com');">Playing God vs. de loterij</a><br />
deafchurch.co.uk:  <a href="http://deafchurch.co.uk/site2/index.php?option=com_content&amp;view=article&amp;id=163:new-ivf-bill-causes-moral-debate&amp;catid=34:news-deaf-world&amp;Itemid=66" target="blank" onclick="javascript:pageTracker._trackPageview ('/outbound/deafchurch.co.uk');"> New IVF bill causes moral debate</a></p>
<p><u>Please let us know in the comment box, if you know of any more.</u></p>
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			<wfw:commentRss>http://stopeugenics.org/2008/03/17/deaf-people-genetics-media-coverage-part-2/feed/</wfw:commentRss>
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		<title>Transcript: BBC Radio 5 Live&#8217;s The Victoria Derbyshire Show</title>
		<link>http://stopeugenics.org/2008/03/14/transcript-bbc-radio-5-lives-the-victoria-derbyshire-show/</link>
		<comments>http://stopeugenics.org/2008/03/14/transcript-bbc-radio-5-lives-the-victoria-derbyshire-show/#comments</comments>
		<pubDate>Fri, 14 Mar 2008 19:51:47 +0000</pubDate>
		<dc:creator>Jen Dodds</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/2008/03/14/transcript-bbc-radio-5-lives-the-victoria-derbyshire-show/</guid>
		<description><![CDATA[Broadcast on Wednesday at 9am, this programme featured interviews with Tomato Lichy and Paula Garfield, the RNID&#8217;s Jackie Ballard and David Blunkett, then a phone-in discussion, with quite a few phone calls from parents of deaf children and people who know Deaf people.  Listen here.  Discussions here and here. Big thanks to Claire [...]]]></description>
			<content:encoded><![CDATA[<p>Broadcast on Wednesday at 9am, this programme featured interviews with Tomato Lichy and Paula Garfield, the RNID&#8217;s Jackie Ballard and David Blunkett, then a phone-in discussion, with quite a few phone calls from parents of deaf children and people who know Deaf people.  Listen <a href="http://www.bbc.co.uk/fivelive/programmes/morning.shtml" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');">here</a>.  Discussions <a href="http://www.bbc.co.uk/dna/mbfivelive/F2148564?thread=5202577" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');"><strong>here</strong></a> and <a href="http://www.bbc.co.uk/blogs/victoriaderbyshire/2008/03/the_right_to_a_deaf_child.html" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.bbc.co.uk');"><strong>here</strong></a>. Big thanks to Claire from <a href="http://www.teamhado.com" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.teamhado.com');">Team HaDo</a> for transcribing it below!</p>
<p><strong>Victoria Derbyshire</strong> ??? Also this morning an important and for some very worrying debate ??? should IVF treatment screen out embryos that are likely to develop disabilities? One deaf couple doesn???t think so. They want to try for a child using IVF, but say that a proposed law would force doctors to screen out some embryos likely to develop into deaf children. Tomato Lichy and his partner Paula spoke to me through a sign language interpreter about how they feel.</p>
<p><strong>Tomato</strong> - What we???re saying is we want equal rights with hearing parents, so what we???re saying is either everybody has the right to choose or nobody has the right to choose ??? one or the other. The Government is proposing new legislation at the moment that if couples go through IVF and if they have testing and some of the embryos are found to be deaf then those embryos have to be discarded. We don???t want that. That makes us feel very emotional, thinking about that. Would that mean that we wouldn???t be able to go through IVF ourselves? It???s almost like the Government is treating deaf people as being inferior and almost not worthy of life or not worthy of being born. And we feel like we???re being attacked and that???s the issue we want to get across.</p>
<p>[cross talk]</p>
<p><strong>Victoria Derbyshire</strong> ??? yes, carry on.</p>
<p><strong>Paula</strong> ??? I???d like to add that deafness is not a life-threatening illness or disease. You can???t die from being deaf, so why is it that these embryos that have the deafness gene are being discarded? It???s almost like saying those embryos that have the hearing gene have more right to be born than those with the deafness gene.</p>
<p><strong>Tomato</strong> ??? This is almost eugenics in a way. The Government is forcing people to select.</p>
<p><span style="font-weight: bold">Paula</span> ??? Who has the right to decide? To decide that embryos that have the deafness gene don???t have the right to be born? Who has the right to decide that?</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Don???t you have an obligation as parents to give the child the chance to hear?</p>
<p><strong>Tomato</strong> - We have an obligation to make sure that our baby is healthy and we don???t see deafness as a disability. If we have IVF and if we refuse this genetic testing there???s an issue there for us in that there???s a family history of heart disease and cancer, so therefore if we refuse to have this genetic testing then these other issues are possibly going to come to the fore, so it???s almost like that???s punishing us really.</p>
<p><span style="font-weight: bold">Paula</span> ??? There are lots of horrible life threatening diseases like cancer and yet everyone seems to be focussing on deafness and getting rid of deafness. Why is it that we are seen as being worse than other horrible diseases like cancer or heart disease? Why is it that people are horrified? If our baby is born deaf, that???s fine with us.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Why would you choose for a child to be deaf, over a child that could hear?</p>
<p><span style="font-weight: bold">Paula</span> ??? If we have IVF naturally, if some of the embryos have the deafness gene in them, then of course I would choose then because they would be the same as me and there would be a connection with that. For example I have a daughter, Molly, and she???s 3 and she???s deaf. How can I explain to her that she can???t have a deaf brother or sister because those embryos were discarded? She might think, ???Well, what about me, should I have been discarded???? It???s almost like, you know, why does she have less right just because she can???t hear? We live active lives, you know.  We travel on the tube, and everyone smiles at Molly, they think she???s so cute and adorable and they don???t see her as being disabled.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? But it is a fact that deafness is a disability.</p>
<p><span style="font-weight: bold">Paula</span> ??? To me, I don???t feel like I am disabled. I came here, with no problem, I can get a taxi, I can communicate with you no problem; we???ve done radio interviews; I???m a theatre director; my diary is full of life. I have a lot of activities, our weekends are busy, we go to parties, we go to the theatre, we go to museums, you know, we???ve been on the radio this week! If my life was full of suffering or full of pain then yes of course I wouldn???t pass that on to my child, but my life isn???t. My life is full.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? You obviously both feel, Paula and Tomato, you feel extremely positive about your deafness but is it right for you to be able to make that decision on behalf of an unborn child?</p>
<p><span style="font-weight: bold">Paula</span> ??? These embryos are created through IVF. They???re already there. They already have the gene in them. I want to make it very clear ??? we???re not designing a deaf baby at all, or creating a deaf baby. If we went to IVF and all of our embryos, there was nothing of the deafness gene in it, if all the embryos had the hearing gene, then absolutely we would go through with it and have a hearing child. Absolutely we would do that. It???s not about designing a deaf baby at all. People have accused us this week of being selfish or disgusting. They don???t know us though, they can???t speak for us. We are good parents. We give a lot of love to our child, you know. We take her out.</p>
<p><span style="font-weight: bold">Tomato</span> ??? There are lots of deaf associations you know that are led by deaf people ??? the British Deaf Association, the World Federation of the Deaf ??? they don???t see deafness as being a disability. Really, it seems to be society???s view that disables us. You know, if we talk about other minority communities, the black community, the gay community, there would be absolute outrage if we were getting rid of embryos that had those genes</p>
<p><span style="font-weight: bold">Paula</span> ??? It is of course natural for hearing people to fear if they have a deaf child because they are not deaf themselves, perhaps they???ve never met a deaf person before ??? they don???t know how to deal with it. But we are deaf; we know how to deal with it. We completely understand that fear.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? Tomato Lichy and his partner, Paula, speaking to me through a sign language interpreter. Let???s hear what you think ??? call 0500 909 693. Should this couple have the right to have a deaf child?</p>
<p>Let???s talk to Jackie Ballard who is the chief executive of the Royal National Institute for Deaf People. Hello.</p>
<p><span style="font-weight: bold">Jackie Ballard </span>??? Hello, good morning.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Should they have the right?</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? Can I explain what the legislation is about? [laughs] That might be a sensible starting place, because clearly it???s a really emotive subject, especially for people like Tomato and his partner, and there???s probably a lot of people listening who don???t quite understand what the issue is about. This is putting into legislation something that is already practised. The Government is taking a number of already existing practises and putting them into one piece of law. And specifically what is says is if a couple are having IVF they can choose to have the subsequent embryos screened for various disabilities or serious illnesses before one embryo is implanted in the womb to turn into a baby. So, with IVF you have a number of embryos and a choice has to be made as to which ones are ???discarded??? and which ones are put into the womb, because you wouldn???t implant all of them. Now, the choice could be made just on a purely random basis, without any screening ??? that is up to the couple. But, if they fear that there may be some serious disability in the family and they don???t want it passed on, they can choose to have screening. If, during the screening, some of the embryos are found to be carrying a gene that can be identified as causing deafness, for example, and there???s a big question about whether you can clearly identify a gene for deafness or not, but if that could be done, and other embryos are not carrying the deafness gene, then the clinician would only implant those that did not carry the deafness gene.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? They would make that decision for you?</p>
<p><span style="font-weight: bold">Jackie Ballard </span>??? They would, yes, and that???s what the law would say. However, so to go back a bit, the couple don???t have to have the screening, so they can have random selection and just let nature take its course so to speak. If all of those embryos have a deaf gene, they can choose to have one of those embryos implanted.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? So, the solution to what they???re saying is a problem and discrimination, is not to have the genetic screening in the first place?</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? Exactly. And that is not compulsory.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Fine. But do you agree with the principle that once screening has been gone through, that the doctors decide which embryos are discarded?</p>
<p><span style="font-weight: bold">Jackie Ballard </span>??? Well, that???s the nature of IVF ??? that some embryos will be discarded. There???s a much bigger philosophical question about that&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? [interrupts] ??? sure, yes&#8230;</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? [interrupts] &#8230;about the rights and wrongs of that.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? But I???m referring specifically to any embryos with any genetic defects, if I can put it like that.</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? Well, we believe that ??? and this is where the disagreement if you like is ??? that this couple, and some other people who have been born deaf and who use British Sign Language as their first language, believe that deafness is not any kind of disability and they believe that it is a cultural identity.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? And what do you believe?</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? Well certainly there is a cultural identity that has grown around deafness and they have their own language, they share a community of interests with other profoundly deaf people, but we would argue that there is still a disability of being not able to hear. So, by definition, if you are not able to hear, you have a disability and arrangements have to be made to enable you to play a full part ??? so, you had to have an interpreter to do that interview.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Mmm. Billy???s in Liverpool and texted us about this, and Melanie is in Leicestershire. She got in touch as well. Hello both of you.</p>
<p><span style="font-weight: bold">Melanie</span> ??? Hello.</p>
<p><span style="font-weight: bold">Billy</span> ??? Hello, how are you?</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? I???m very well, thank you. What do you think Melanie?</p>
<p><span style="font-weight: bold">Melanie</span> ??? Well, I can see both sides of the coin really. I have 3 grown up children all in the 19-20 age group and the eldest one was born hearing and the two youngest ones were born profoundly deaf, though we have no history of deafness. And I just have to disagree with Tomato and Paula???s opinion that deafness isn???t a disability. It limits their lives in certain ways. They???re independent, they travel around, they have good jobs, but nevertheless they cannot partake in the worldwide community in the same way that a hearing person does. Yes, they can go to deaf clubs, yes they can join deaf associations but they want more than that.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? But their view is that actually, we???re the ones losing out, because we can???t participate in deaf clubs and we can???t tune in, if I can put it like that, to cultural programmes for deaf people, or the deaf community broadly.</p>
<p><span style="font-weight: bold">Melanie</span> ??? Well, they do have a point there, but we???re looking at it from both sides of the coin and I have seem at close hand three young people grow up and I can only say that my eldest child, who is hearing, has had a much easier pass through life than my younger children. And we have done everything to make sure that the deaf children partake in the deaf community and the non-deaf community. They sign, they have had cochlear implants, which was their own choice as teenagers and they have friends on both sides of the camp, if you like. But nevertheless, they couldn???t listen to this radio programme. No matter how much a part of the deaf community, they couldn???t hear it live. It???s those sorts of things. You know, if they go to a party they can, if they only signed, they could only sign with other deaf people; if they wanted to go and chat with hearing people they???d find that very difficult.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Let???s talk to David Blunkett for the next couple of minutes. Hello Mr Blunkett.</p>
<p><span style="font-weight: bold">David Blunkett</span> - Good morning Victoria.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Do you comprehend where this couple is coming from?</p>
<p><span style="font-weight: bold">David Blunkett</span> ??? Well, I understand where they are coming from but I disagree profoundly with them. They???re coming from a particular angle which is growing within what they call ???the deaf community???. I don???t accept that there is a blind, or a deaf community, we all live in the same society. But they would say amongst deaf people, which is, as has already been described, almost cultural ??? it???s to say we are separate; in some ways we have something you don???t have and this is a positively good thing and we are therefore promoting the idea that deafness is somehow superior. Now I don???t accept that for a moment. I don???t accept that not being able to see has some sort of profound benefits that you???re losing out on. The fact that you can???t read Braille is not a disadvantage to you. The fact that I have to is a disadvantage to me.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? I don???t think they were saying that they felt superior. Actually, they felt equal to people who could hear.</p>
<p><span style="font-weight: bold">David Blunkett</span> ??? Well, they said that, but there is a movement within those who are sort of very evangelical, almost proselytizing, as part of those who are deaf, about the refusal to have implants. You???ve just been talking to a mother whose children had implants and I think that???s a very sensible thing to do, but it is a choice by individuals, but there are people who don???t want implants, who believe that they???ve got a separate language and that that language is some sort of cultural development and I just don???t get this at all. I mean I don???t feel disabled, but I accept that being blind is a disability.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Sure, but it has not stopped you from leading a fulfilled and fulfilling life.</p>
<p><span style="font-weight: bold">David Blunkett</span> ??? No, absolutely and I would never want a foetus to be aborted because someone felt that this unborn child might not be able to see or might be deaf, but if you have the choice. Say, in the past, that I had had to have IVF with my former wife and we???d been given an option to have screening so that we could be assured that our child would not be blind, I would have gone for it. And I think most of the people that I grew up with who had, for instance, Retinitis Pigmentosa, which is genetically passed on, would choose to have a seeing child.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? But they don???t want to ???go for it???, using your words, so why aren???t we giving them that right?</p>
<p><span style="font-weight: bold">David Blunkett</span> ??? Well, we are giving them the right to go for IVF and we???re giving them the right not to have the screening. But if the screening takes place, you???re not actually saying we???re screening out a deaf child of the future, you???re screening in a child that does not have a disability ??? that???s what you???re doing. You???re saying do you really, seriously want to make the choice to have a deaf child over and above a child that can actually hear because, as I heard someone saying two days ago on Radio 4, that actually it would be awkward for the child, it would be unfair on the child to be able to hear in a family that was deaf? Well, I find that absolutely bizarre.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Thank you for your time Mr David Blunkett, former Home Secretary. We???ll talk to more of you in a moment. Melanie, thanks for your time. Jackie Ballard, if you could stay for a few more moments that would be good, thank you. Here???s the travel ???</p>
<p>[break for travel news]</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Let???s talk to Denise who is in Yorkshire, and David in Salford and Billy in Liverpool. Billy, you???ve been patient, good morning, what do you think?</p>
<p><span style="font-weight: bold">Billy</span> ??? Well I think it???s bizarre really. I think deafness is a disability, blindness is a disability, I???ve got multiple sclerosis, that is a disability and to say that these things are not disabilities is just very, very strange indeed. I did actually listen to the couple after I sent the text in and I did hear what they were saying about the way that their daughter is treated on the tube and everything and I do understand in some ways where they are coming from, but to choose to have a disabled child instead of a non-disabled child is just bizarre. It???s just very, very strange indeed. I mean, I???ve got a variable disability and I try to make the most of things, but if I was given a choice between having a child that was going to have that disability and having a child that was not going to have that disability, I would choose a non-disabled child straight away because I have had many problems with having multiple sclerosis and if it was a child who had MS and a child that didn???t, well the implications for that child, and for me as a parent would be enormous. And I really do think that it???s cloud cuckoo land, let???s face it, I would frankly say, and I don???t really know what you would say to the parents really. In a way, I do understand what they???re saying when they say that they???re deaf and there???s nothing wrong with being deaf, but it is a disability, because they couldn???t hear us now.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Denise, you think they???re being selfish this couple?</p>
<p><span style="font-weight: bold">Denise</span> ??? I do yes. I think to knowingly deprive a child of one of their major senses and to purposefully cause them to miss out on a wealth of experience and opportunity that is available to people that can hear is, like the man said, bizarre. I hate the work ???community???, but what they???re wanting to do is purposefully cut them off from the hearing community.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? They don???t feel cut off at all. Yes, they use and interpreter, a sign language interpreter. They don???t feel cut off though.</p>
<p><span style="font-weight: bold">Denise</span> ??? Well they are in a way. They have to be, because they can???t hear.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? That???s your perception. They don???t feel cut off at all.</p>
<p><span style="font-weight: bold">Denise</span> ??? I think the perception is&#8230; yes, it???s perception only, but people who hear, hear everything around them; people who can???t hear, can???t hear everything around them. And they are cut off from the hearing community if they can???t hear what???s going on unless they have special measures to cope with that. What they???re saying is, ???We???re fine coping with that??? and yes they are, they???re doing very well and that???s great, but to knowingly impose that on a child is irresponsible in the extreme. And I have a bit of a problem with IVF anyway and I don???t pretend to have any answers, but I think a lot of caution is needed in this. And surely every parent would wish that their child is as perfect as possible; ???perfect??? in inverted commas. To wish them to have a disability just so that they can be part of the deaf community is&#8230; They say they don???t consider themselves separate, but why do they call themselves the deaf community then? I think they see being deaf as the major part of their persona and it???s a disability, however they like to dress it up. It is a disability and to wish that on anybody is cruel.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? David, do you think it???s ???cruel???; ???selfish??? ??? words that Denise has used?</p>
<p><span style="font-weight: bold">David (from Salford) </span>??? Absolutely. I mean, I???m a totally blind person. I???ve not been blind since birth, but I???ve had an eye complaint and now I???m totally blind. And there???s no way on this earth&#8230; ok, I get by in life, but believe you me, it ain???t easy. You know, at times. There???s obvious things that go along with blindness that make life harder, like getting jobs and so on, and that???s just the thin end of the wedge. What choice are they giving the child? They???re just saying well, you???re going to be born deaf whether you like it or not. They???re not saying well have your hearing first and decide later on if you want to go deaf. If an operation came out tomorrow that could restore my sight, and give me total, full sight, I???d take it and I???m sure most right-thinking disabled people would as well. Do you know what I mean? I just think it???s selfish, it really is. And there isn???t a deaf community&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Jackie, do you want&#8230;?</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? Yes, if I could maybe try and explain where I think this couple are coming from. And I think the gentleman who is blind might agree that society discriminates against people who have disabilities ??? as he said, it???s more difficult to get a job if you???re blind or you???re deaf or you have some other disability. And if you belong to a group of people who are discriminated against by society, you start to wonder whether society really values you on an equal basis, and I think that this couple are interpreting the law that says given a choice between hearing and non-hearing embryos, you can only implant the hearing ones ??? that to them feels like they???re not being valued as a full member of the wider community. But in fact, I think what we???re saying is, of course, once you are in existence you are valued as a full member of the community and you should have every right and opportunity afforded to you, but if, during the course of IVF, there is a way of ensuring that children are born without that disadvantage in life, then we should take it.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? David, did you want to just come back in?</p>
<p><span style="font-weight: bold">David</span> ??? Yeah, just that the lady was saying there about where I might agree ??? with discrimination and that, well, discrimination but&#8230; I see myself as a person who can???t see, if you know what I mean? Who has eyesight problems. And I really&#8230; ok, things get on my nerves about discrimination, but I honestly don???t go through my life thinking, ???woe is me??? kind of thing&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> [interrupts] ??? Yeah, pitying yourself, yeah.</p>
<p><span style="font-weight: bold">David</span> ??? I???m so discriminated against by the sighted world. You know what I mean? Ok, things get on your&#8230; well I can???t say the word, but you know, you just get on with it. But I certainly wouldn???t purposefully choose a child to come, knowing the difficulties I have had, having a disability when I was growing up ??? I had to go away to school, and not be a part of my own normal, sighted community.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? I don???t think, I think Jackie I hope you???ll agree this is correct ??? I don???t think that Tomato Lichy and Paula say is we absolutely want a deaf child. What they???re objecting to is the fact that the deaf genes, the deaf embryos if I can put it like that, will be discarded and they think that???s discrimination because it sends out a signal that people who are deaf are somehow inferior.</p>
<p><span style="font-weight: bold">Jackie Ballard</span> ??? I think that???s what they???re saying. And I think the onus is on us, the rest of society to say very strongly that deaf people are not inferior and that deaf people achieve all sorts of things that hearing people can achieve, but that given a choice between a child that has those set backs in life and a child who doesn???t, in those extreme circumstances of IVF and genetic screening, then we should choose the one that isn???t going to have those set backs.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? So they???re not saying, ???We want a deaf child???, but ???We want the RIGHT to have a deaf child??? and not have to discard those particular embryos. I think that???s a fair summary. David, thank you very much. Billy, thank you. And Denise, thank you very much for coming on the programme. Jackie Ballard, thanks for your time, from the Royal national Institute for Deaf People.  We???ll talk to more of you after the news and sport. Should IVF treatment screen out embryos that are likely to develop disability? That???s what new legislation will do. In fact, as Jackie says, it???s already happening in practice but it will be formally put together, if you like, in proposed new legislation.</p>
<p>[break for news and sport]</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Our debate this morning is about a couple called Tomato Lichy and Paula. They are both deaf. They want to have a child by IVF and they say a proposed law would force doctors to screen out some embryos likely to develop disabilities, including deafness, and they say that is discrimination. They say deaf people are not inferior to people who can hear, so why should those embryos be screened out? Let???s hear from Chris in Nottingham, Carol in Leeds, Ken in Winscombe and Richard in Bolton, thanks for joining us and thanks for your patience. Chris, why don???t you kick off and then everybody join in, so we actually have a conversation rather than a series of speeches if I can put it like that. Hi Chris.</p>
<p><span style="font-weight: bold">Chris</span> ??? Morning Victoria. I???m not&#8230; I haven???t got a huge amount of opinion personally on the issue that you???re talking about, but I am very angry about how it???s being reported. To me, it???s quite ironic really because most of the contributors, well, I assume all of the contributors to your programme have got hearing, but they don???t seem to be using it.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Go on.</p>
<p><span style="font-weight: bold">Chris </span>??? It???s being reported as if they want to create a deaf child, well, when I listened to the couple, I never heard them say that. I heard them say that they wouldn???t want a child to be discarded because of deafness.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Yes. I don???t think I???ve said that they want to create a deaf child. I hope I haven???t. I don???t think I have.</p>
<p><span style="font-weight: bold">Chris</span> ??? I heard at the start of the show, ???they shouldn???t be stopped from creating a deaf child???. And people are presuming that these people want a deaf child. They never said that and people aren???t using the ears that they do have.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Yeah, fair enough. It???s whether they should have the right to have a deaf child. They don???t want necessarily a deaf child, but they just don???t want those embryos that might have a deaf&#8230;</p>
<p><span style="font-weight: bold">Ken</span> ??? Can I butt in there?</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Yeah, of course. Who???s that?</p>
<p><span style="font-weight: bold">Ken </span>??? It???s Ken from Winscombe.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Go on Ken.</p>
<p><span style="font-weight: bold">Ken </span>??? You say they???re asking for the right to have a deaf child rather than have it screened out. We???re in a bit of a Monty Python area here, aren???t we? With the cat sat on the bench saying I don???t want to have a baby, I want the right to have a baby. From a personal point of view, having worked with a profoundly deaf person and a partially deaf person, the frustration I see on those people???s faces when they can???t communicate with you. I can???t see why anybody would even wish to have the right to have a deaf child.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Well, but that???s what they want. And they were certainly not frustrated in communicating with me when we did the pre-recorded interview.</p>
<p><span style="font-weight: bold">Ken</span> ??? Well they didn???t, but that???s another one of my points ??? I think your pre-recorded interview was perfect evidence as to why, why would you want the right to have a deaf child? I???m not saying they???re going to have a deaf child, but surely to be able to screen the disability out in the embryo stage ??? surely that???s a better way to go forward, isn???t it?</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Well, they have very positive experiences of being deaf.</p>
<p><span style="font-weight: bold">Ken</span> ??? Yes, I know, but they then say that they???re no different to the rest of the community and of course they are, cos they???re deaf! They can only communicate with people that can either sign or can lip-read. It???s&#8230; [exasperated sigh]</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? They can&#8230;</p>
<p><span style="font-weight: bold">Ken</span> [interrupts] ??? Now I???m as frustrated as the deaf chap I used to work with! I mean it got to the point with him that he tried to commit suicide because he couldn???t communicate with the outside world. Why would somebody with that on somebody? Why would somebody wish for them to have the right to have a deaf child?</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Carol, what do you think?</p>
<p><span style="font-weight: bold">Carol</span> ??? Well, at the point where he said, where he questioned whether it was unfair or not to have a hearing child in a deaf family, and I???m a speech and language therapist and I do have some experience of working with hearing children from deaf families and it is really hard for those children. Current policy in the area I work with is that if a child is born deaf then that child is assigned, almost from birth, a social worker, a teacher of the deaf, you know everything that we???ve got to help that child communicate in whichever way that is going to be right for them. If that child is born hearing then there???s nothing for them. And if that family is non-speaking and deaf and if they are a part of the deaf community then a lot of their friends will be non-speaking and deaf, so this baby will not receive adequate spoken language in order to develop functional speech and&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Sorry, you mean if they have a hearing child?</p>
<p><span style="font-weight: bold">Carol</span> ??? Yes, if that family have a hearing child. Often those children aren???t picked up until they get to nursery and they don???t understand what???s going on, there???s no expressive language and they end up seeing me. And I???ve got recent experience of quite a few of those children. And that???s the way that current Government funding for disability works. So, regardless of the general point I think there does need to be some consideration for the difficulties that a deaf family would face having a hearing child.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Richard, you???re interesting. Tell us about your children.</p>
<p><span style="font-weight: bold">Richard</span> ??? Yes, hello there. Yeah, I???ve got two lads; fantastic lads ??? Harry and James. Harry???s got no problems hearing and James has, he was born deaf in one ear and he???s got partial hearing in his other. And with his hearing aids he???s starting to make some good progress hearing-wise. I???d just like to phone in and defend the deaf rights couple, er, the deaf couple???s right really here. I???m opposed really to the meddling by the doctors. During our journey with James we???ve had an opportunity to meet with loads of deaf people, deaf couples and in fact I ended up working with a couple trying to help them market their own deaf awareness business and they would categorically not consider themselves to be particularly disabled. Now that???s remarkable for hearing people to hear, but I would totally concur with that ??? they???re very happy, engaging in every aspect of life. Obviously debates in groups would be difficult, but they feel some of the issues that people have with deaf people are very offensive really. And I, in my own mind, have no doubts that if that couple had a choice of what child they would have, they???d probably prefer to have a deaf child.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? For the reasons that perhaps Carol has just identified?</p>
<p><span style="font-weight: bold">Richard</span> ??? Well probably because they could parent it better. I mean the most important influence for that child is the parents by far and I???ve met with couples who want to have their deaf children speaking and hearing and they go down that route and that???s a brilliant route for them; others decide that the signing route is the better route for them. It???s very, very complicated and very difficult for you to choose, but if you???re equipped with a fantastic way of getting around the world with sign, with lip-reading, with lots of other skills, you can achieve immense things. The other thing I???d&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? I don???t think anybody&#8230; Nobody doubts that. And they are examples of people who have achieved immense things.</p>
<p><span style="font-weight: bold">Richard</span> ??? Yes. And my point there is that as parents, they???d be thinking, ???We???d be able to pass on this wealth of skills, this wealth of knowledge to our child in a much better way than we might be able to, because we don???t have the skills to pass that on verbally.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Fair enough, and then you go out into&#8230;</p>
<p><span style="font-weight: bold">Richard</span> [interrupting] ??? It would equip that child in such a great way to go out and achieve as well.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Sure, but then you go out into the big, wide world and there isn???t always a sign language interpreter available.</p>
<p><span style="font-weight: bold">Richard </span>??? Well, there???s plenty now. It???s a growth area. It has its own rights as a language in its own right. You know, you could say that if you only spoke Welsh you???d still get by ??? there???s lots of provision for Welsh speakers&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> [interrupts] ??? Well let me read you this email&#8230;</p>
<p><span style="font-weight: bold">Richard</span> [interrupts] ??? If you work in various public bodies now they translate things into millions of languages for people.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Sorry, Ken? Is that Ken or Chris? I can???t&#8230;</p>
<p><span style="font-weight: bold">Ken</span> ??? It???s Ken. The only reason all these things are there is that we???re lucky enough to live in a society that can supply all these things</p>
<p><span style="font-weight: bold">Richard</span> ??? Absolutely. That???s great. That???s what we should be doing.</p>
<p><span style="font-weight: bold">Ken</span> ??? But once you step out of that society, it???s not there, is it?</p>
<p><span style="font-weight: bold">Richard</span> ??? I know, but you don???t because it???s in society ??? you don???t step out of it; it???s here in our society and our society is getting better &#8230;</p>
<p><span style="font-weight: bold">Ken </span>[interrupts] ??? Well you???ve just been talking about doing worldwide things. If you???re gonna go on a worldwide trip for example and you???re deaf and you go to the depths of Africa on safari, what???s the chances of their being a sign language interpreter if you get bitten by a spider or whatever? You???re trying to sign to somebody to say you???ve been bitten by a spider and they???re looking at you like you???re some kind of fool.</p>
<p><span style="font-weight: bold">Richard</span> ??? You don???t know what you???re talking about. My two friends who are completely deaf have just returned back from a worldwide trip, ending up for a year in New Zealand. You???ve no experience of it so really you should just butt out.</p>
<p><span style="font-weight: bold">Ken </span>??? I have experience. I???ve worked with deaf people and they both got really frustrated because he couldn???t hack it. I didn???t get frustrated; I was fine with it. The frustration was what the deaf people were suffering because they couldn???t communicate. We tried as much as we could to communicate with them but there comes a point where&#8230;</p>
<p><span style="font-weight: bold">Richard</span> ??? You don???t have the skills, you haven???t been on the training, you probably didn???t know what you were doing.</p>
<p><span style="font-weight: bold">Ken</span> [shouting] ??? Why would I&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Richard, can I put this email to you?</p>
<p><span style="font-weight: bold">Ken</span> ??? Why would I want to&#8230; Why would I go and learn sign language and learn to lip-read, just because I can? I???ve got other things to do in life. I???ve got children to bring up, I???ve got work to do, I don???t have time to do these things.</p>
<p><span style="font-weight: bold">Richard</span> ??? Then move on and let somebody else do it. Plenty of people would be quite happy to spend some wonderful time talking, guiding deaf people who have no real problem communicating whether they can hear or not. You haven???t had any experience of that.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Richard, let me read you this email. Richard, I???d like to read you this email from Brian and you may say it???s naive but I think a number of people would agree with it. ???Surely it???s best for society and for the child itself to have the ability to hear? From hearing fire alarms and walking across the road safely, to appreciating the music of Beethoven and Mozart, it???s better to be able to hear.</p>
<p><span style="font-weight: bold">Richard </span>??? Right, ok, Beethoven went deaf and created some fantastic music; to cross the road, you use your eyes and a smoke alarm, you put lights on and they flash. Next question.</p>
<p><span style="font-weight: bold">Ken</span> ??? You said Beethoven went deaf and he created music; he already understood the rules of music before he went deaf though, didn???t he?</p>
<p><span style="font-weight: bold">Richard</span> ??? Well, deaf people can understand music from vibrations.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Sure. Richard, is it better to be able to hear?</p>
<p><span style="font-weight: bold">Richard</span> ??? Well, obviously you???d want your full faculties but it???s no big deal if you haven???t got your full faculties. You can get by.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Thank you very much Richard and Ken. Go on Carol.</p>
<p><span style="font-weight: bold">Carol </span>??? As Richard said, yes, it clearly is better to be able to hear, but, as I said before, there does need to be support for children who are able to hear but who are in a deaf world and they???ve got the reverse of that difficulty.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Yeah, ok.</p>
<p><span style="font-weight: bold">Carol </span>??? and you know, our society has no support for these children.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Thank you very much Carol and Ken and Richard and Chris. Here???s the travel.</p>
<p>[travel news]</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? One emailer says, ???I have a deaf couple living next door to me; they had twins ??? the girl was deaf, the boy had slightly impaired hearing. When the twins were teenagers they had major problems with the boy because he resented bitterly being surrounded by the deaf community. As a result he went off the rails and only just missed out on going to prison. I know that they resented having a hearing child and wish that he had been deaf as well.???</p>
<p>John in Bristol says, ???Since the birth of our profoundly deaf granddaughter nearly 4 years ago, we???ve experienced at first hand an almost tribal-like mentality amongst a significant proportion of the deaf community. Digital hearing aids and cochlear implants are eschewed as unnatural interference and those that use the advances that medical research has to offer are regarded as somehow impure. By all means celebrate individual differences but not to the extent that it breeds an arrogance and a contempt for those deaf people who choose gratefully to accept technological means of leading a more integrated role in society.???</p>
<p>Here???s Nick in Milton Keynes. Hello.</p>
<p><span style="font-weight: bold">Nick</span> ??? Hi Victoria.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Hi. And Erica in Abergavenny and Andy in Wigan. Now, I???m looking at the time. I may not be able to get you all in before ten, but if we don???t, we???ll do it after 10 as well. Right ??? go on Nick.</p>
<p><span style="font-weight: bold">Nick</span> ??? My point is that I have 2 hearing children and 2 deaf children. The deaf children are aged 5 and 7. I don???t think people should underestimate the challenge that these kids have. Mine have a condition called Auditory Neuropathy which is caused by genetics and they hear sounds but the sounds are scrambled between the cochlear and the brain, so you can imagine how difficult that life is for them. Hearing aids don???t help. All the sounds that they hear around them are just scrambled.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Yeah. So do you think IVF treatment should screen out embryos that are likely top develop disabilities, including deafness?</p>
<p><span style="font-weight: bold">Nick</span> ??? I do and I think that, you know, we know so little about genetics at the moment, but if you could screen out conditions like this I think it would be worthwhile.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? Yeah. Erica, do you agree?</p>
<p><span style="font-weight: bold">Erica</span> ??? I find it really hard. I???m listening away and thinking where do I stand on this, because my daughter???s deaf and she had a cochlear implant at 2 years old - she was deafened at 5 months by meningitis and I chose to give her an implant because I wanted to give her access to the hearing world. I guess what I wanted was for her to be like me, just as this couple want their child to be like them. So I really, really feel for them. I read the article in the Observer on Sunday and started off feeling angry then thought no, actually I completely agree with them. If things had been different, if my daughter had been born deaf and if some miraculous thing had told me this embryo I had inside me was deaf, the idea that I would have got rid of her is just awful. She???s&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? Yeah, but an embryo in a petri dish is different to a foetus that is developing in your womb.</p>
<p><span style="font-weight: bold">Erica</span> ??? Yes I know. I just feel they have a right to have a child that is like them. I really do.</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? Ok, that???s interesting. Thank you Erica, thanks Nick. Hi Andy. Thanks for your patience. What did you want to say?</p>
<p><span style="font-weight: bold">Andy</span> [poor quality sound link] ??? No problem at all. If you could just give me a couple of minutes just so I can get all of my points across. Number one, I???m sure I heard one of your texters say I wouldn???t want to choose, how would anyone choose to be disabled? Well it???s not like going in your local Wetherspoon???s where on the left hand side of the menu it???s blind and on the right hand side it???s deaf ??? some of us are born with it, yeah? And we ensure to ourselves and we find the best way to go about it and we surround ourselves with the people we trust and we get into environments. It doesn???t stop me placing bets, it doesn???t stop me going to rugby games cos I take me radio and I???ve got sighted assistants and things like that. I???m not bad. And I???ll just say, cos I know the news is coming up, all of our other sensory aids are enhanced. Like Richard said in Bolton, when a deaf person wants to try and cross the road they can see instead of using their ears. That???s if they???re deaf of course. And for blind people we have other assistance, we have these crossings, we have audio description on the telly and deaf people have, you know, what are they called? Subtitles. So yeah, everything???s there if you want it and if you want to use it. But if you want to feel sorry for yourself, which admittedly not everybody does, then that???s up to you. It kind of sounds a bit harsh, but&#8230;</p>
<p><span style="font-weight: bold">Victoria Derbyshire</span> ??? And you just get on with it do you Andy?</p>
<p><span style="font-weight: bold">Andy</span> ??? Well, there are difficulties of course. You guys driving in the fog ??? you know what it???s like, don???t you? Can you imagine doing that for, like, the whole of your life? But then your sat nav would help you, wouldn???t it? The people we trust are our sat navs, if you like, when we???re getting from A to B and things like that. And you know, we manage. It???s not impossible you know. It???s not as difficult a world as everybody is making out. As I said, I was born with it and I???ve been lucky because I???ve surrounded myself with the right people and I???ve got into a good working job which is fine and just to let everybody know, it???s not impossible.</p>
<p><span style="font-weight: bold">Victoria Derbyshire </span>??? Ok, thank you very much Andy, I appreciate that.</p>
<p>[news]</p>
<p><span style="font-weight: bold">Newsreader </span>??? A deaf couple who want to try for a baby through IVF say a proposed law would force doctors to screen out some embryos likely to develop into deaf children. Through a sign language interpreter, Tomato Lichy and Paula told us they wanted the same rights as hearing parents and the new law was wrong.</p>
<p>[cut to Tomato] ??? That makes us feel very emotional, thinking about that. Would that mean that we wouldn???t be able to go through IVF ourselves? It???s almost like the Government is treating deaf people as being inferior and almost not worthy of life or not worthy of being born.</p>
<p>[end of deaf-related content]</p>
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		<title>Transcript: Scottish Television&#8217;s The Five Thirty Show</title>
		<link>http://stopeugenics.org/2008/03/14/transcript-scottish-televisions-the-five-thirty-show/</link>
		<comments>http://stopeugenics.org/2008/03/14/transcript-scottish-televisions-the-five-thirty-show/#comments</comments>
		<pubDate>Fri, 14 Mar 2008 19:30:08 +0000</pubDate>
		<dc:creator>Jen Dodds</dc:creator>
		
		<category><![CDATA[Media Campaign]]></category>

		<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://stopeugenics.org/2008/03/14/transcript-scottish-televisions-the-five-thirty-show/</guid>
		<description><![CDATA[The British Deaf Association&#8217;s Richard Jones was interviewed on Scottish Televisions&#8217; The Five Thirty Show on Wednesday.  You can watch it here (link valid until Tuesday 18th March).  Richard uses BSL but there are no subtitles - many thanks to Rachel Belk for transcribing it below: 
Male presenter (Stephen): Now, who would choose [...]]]></description>
			<content:encoded><![CDATA[<p class="MsoNormal"><o:p><a href="http://bda.org.uk/" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/bda.org.uk');">The British Deaf Association</a>&#8217;s Richard Jones was interviewed on <a href="http://www.stv.tv/content/tv/thefivethirtyshow" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.stv.tv');">Scottish Televisions&#8217; The Five Thirty Show</a> on Wednesday.  You can watch it <a href="http://www.stv.tv/content/tv/thefivethirtyshow/theshow/wednesday" target="_blank" onclick="javascript:pageTracker._trackPageview ('/outbound/www.stv.tv');"><strong>here</strong></a> (link valid until Tuesday 18th March).  Richard uses BSL but there are no subtitles - many thanks to Rachel Belk for transcribing it below: </o:p></p>
<p><strong>Male presenter (Stephen)</strong>: Now, who would choose for their child to be anything less than perfect? Well, a Deaf couple in say they, at least, would like the option. New fertility legislation is set to make it illegal to use embryos with an abnormality like deafness during IVF treatment, but the couple argue that is discrimination.</p>
<p><strong>Female presenter (Debi)</strong>: They believe they have the right to choose to have a deaf child and want that right to be recognised. Well, joining us in the studio to talk about this controversial topic is medical ethics expert, Professor Hugh McLachlan alongside Richard Jones from the British Deaf Association and the voice you will be hearing is that of interpreter Andrew Dewey. To you, Richard, first of all: Should this couple have the right to have a deaf child?</p>
<p><strong>Richard Jones (via interpreter)</strong>: Well, this Deaf couple, I believe, should have the right to choose. Obviously, if it???s hearing or deaf, it shouldn???t make any difference and that choice should be made available.</p>
<p><strong>Stephen</strong>: Professor, we???ve seen in the past, couples choosing or trying to choose, to determine the sex of the child. This takes it to a whole different level though, doesn???t it?</p>
<p><strong>Prof Hugh McLachlan</strong>: Yes, but I think, whether or not people have a right to make that choice, I think it???s morally permissible. I don???t think there???s any child harmed by this. I mean, I think it would be one thing to ???deafen??? a child who could otherwise hear, but that???s quite different from choosing to have a child who otherwise wouldn???t be born who happens to be deaf.</p>
<p><strong>Stephen</strong>: But what would you say to people who say it???s selfish on the part of the parents to want the child to be like them and in their image.</p>
<p><strong>Prof Hugh McLachlan</strong>: Well, I don???t know that it???s selfish in the sense that other people???s rights are infringed. Selfishness suggests that, not only do you do what you want to do, but you???re doing something that other people are harmed by. I don???t think that is selfish in this case, no. Self-regarding, but not selfish.</p>
<p><strong>Debi</strong>: what would you say to that, Richard?</p>
<p><strong>Richard Jones (via interpreter)</strong>: Well, for Deaf people, whilst it might be seen as a deficit, we view deafness in a very positive light, in that there is a d/Deaf member of the Welsh Assembly, there are many d/Deaf people that run successful businesses and so, those people, it???s an issue that people won???t allow Deaf people to make their choice.</p>
<p><strong>Debi</strong>: So you would like to see, potentially, the law changed?</p>
<p><strong>Richard Jones (via interpreter)</strong>: Yes. I think, as the professor has said, it???s not infringing upon other people. If deaf people are born deaf, they should be allowed to grow up and to have deaf parents, to allow them to rear them. They???ll have a quality of life and that should be encouraged and many deaf people lead good quality productive lives.</p>
<p><strong>Stephen</strong>: You???re an expert in ethics, professor. Where does this stop though, if we carry on down this road?</p>
<p><strong>Prof Hugh McLachlan</strong>: I think it stops where we want it to stop! I think slippery slopes are no more slippery slopes than greasy gradients ??? upward-sloping. We choose where it stops and I think, in this case, I???m disappointed with the decision and I think, in a case like this, they should be permitted to choose.</p>
<p><strong>Debi</strong>: Do you think it???s a lifestyle choice, in a way?</p>
<p><strong>Prof Hugh McLachlan</strong>: Well, even if it is as well, that doesn???t make it wrong. I don???t think there???s any person???s rights infringed here and I think other choices should be allowed as well. I don???t think choosing, itself, is wrong. Even if other people wouldn???t have chosen on that basis, I don???t think it follows we should make it impermissible to do so.</p>
<p><strong>Stephen (to Richard)</strong>: Is this debate good from your point of view because one of the things the couple have said is they don???t see deafness as a disadvantage in their lives. It???s not held them back. Is this a good way of looking at deafness and the impact it has on people???s lives? And the way that it can, in fact, let you lead a full and fruitful life?</p>
<p><strong>Richard Jones (via interpreter)</strong>: Yes. The view of the majority of society often looks at the larger norms of society, which is hearing, whereas the smaller minorities really should be included and not looked at just from that medical viewpoint as if deafness is something that makes them inferior. Deaf people can contribute to society, they should be treated as equals and as citizens.</p>
<p><strong>Debi</strong>: Well, this is a debate, I think, which could run and run. So thank you very much to both of you for joining us.</p>
<p><strong>Stephen</strong>: Yes, thank you for your time. What do you (viewers) think about this controversial topic? As always, we want to hear your views. Get in touch with us via the addresses that are on your screen (<a href="mailto:stephen@stv.tv">stephen@stv.tv</a> and <a href="mailto:debi@stv.tv">debi@stv.tv</a> ).</p>
<p>[END]</p>
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