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Q+A: Susan Wood interviews Mike Sullivan and Robert Cole

Susan Wood interviews Saving Downs’ Mike Sullivan and Otago University student Robert Cole (who co-authored the paper)
 
MIKE SULLIVAN – Saving Downs
                        Eugenics has always been concerned with the policy of reducing the prevalence and population of people deemed to be disadvantaged, so they’ve actually presented that argument in the paper.
 
SUSAN          But I would perceive a disadvantage of a Down’s baby.  One disadvantage I would perceive is that they may never live independently.  Am I wrong?
 
MIKE              Well, yes, I think you are.  When we look at the history of Down’s syndrome in New Zealand and the shift away from institutionalisation to children being in our families and our communities, there’s been a revolution in their capabilities and achievements and—
           
SUSAN          But you can’t be confident your 5-year-old will live independently at 50 or 40 or 30, can you?  You don’t know that 100%.
 
MIKE              Well, I don’t think any parent knows that about their child, so I think we need to challenge those underlying assumptions of seeing disability as something that’s a disadvantage when, in fact, it’s part of human diversity and dignity.
 
SUSAN          The report, as it pains to point out, though, that people with Down’s report high satisfaction with their lives, they’ve got self-worth, they love their families and friends and that information should be passed on to medical professionals.  That would seem to me the opposite of making the case for eugenics.
 
MIKE              Well, absolutely, and that’s where there’s a disconnection in the paper, because on the one hand they’re acknowledging, you know, the inherent dignity of people with Down’s syndrome, but then they’ve presented—
 
SUSAN          Aren’t they putting both sides, though?  Aren’t they just putting— laying both sides out?
 
MIKE              Well, I believe — you know, as an advocacy group for disabilities, I believe they’ve crossed a line, because the fundamental principle of human rights is that all members of the human family have dignity.  And what they presented here is this argument that in the interests of the greater good, then these people, these beautiful children, who have Down’s syndrome may not be welcomed into our society.  It runs counter to that principle.
 
SUSAN          Your group wants screening to be only as advice, not for termination of Down’s.  So who would choose that?  You were saying you should choose if a woman should give birth to a Down’s baby?
 
MIKE              Well, we’re saying that the application of those types of law should be without discrimination towards people with disabilities.
           
SUSAN          But the disability’s in there, and it’s the woman’s choice.  I mean, are you saying it should be your choice, it should be the government’s choice?  Because surely the woman has a right to choose, a family.
 
MIKE              Well, we’re saying that in terms of the Convention on the Rights of People with Disabilities article 10, The Right to Life, that people with disabilities do have a right to life.
 
SUSAN          But our law allows abortion on disabilities, and it allows women and families to choose.  Are you saying that’s wrong?  Are you saying you should be choosing or the government should be choosing?         
 
MIKE              Well, if we look back at how that law was established back in 1977, the argument was put forward that it would be unethical to have abortion on the grounds of social convenience, but it would be moral to enable abortion of disabilities.  And the reasons they used for that was that the—
 
SUSAN          But you don’t want abortions for disabilities, or not Down’s, do you?
 
MIKE              Well, we want a level playing field, so we want one law that applies to all.  We don’t want a distinction in law which says that—
           
SUSAN          So you don’t— Let’s be really clear.  It’s a really simple question.  You do not want Down’s babies to be aborted?  You do not want that to be allowed, correct?
 
MIKE              We don’t want a distinction in the law that says that Down’s syndrome in itself is a basis for a termination of pregnancy.
           
SUSAN          It’s a disability, though, and it comes under that wide-ranging disability.
 
MIKE              Well, no, because it’s a contravention of the United Nations Convention on the Rights of People with Disabilities.  That article’s quite clear.  It says that people with disabilities have a right to life, and that right to life—
 
SUSAN          But a mother has a right to choose who she gives birth—
 
MIKE              Well, if I can finish explaining that.  So that article for right to life says that that has to be provided on an equal basis with all others.  The situation we have in New Zealand is a law that makes a distinction.  It provides a different level of protection solely on the basis of disability.
 
SUSAN          So you want the law changed?
 
MIKE              And that law is a discriminatory law.
           
SUSAN          So you want that law changed?
 
MIKE              Yes, we do.
           
SUSAN          Very good.  Joining us now, Rob Cole from Otago University, one of the authors of the report.  Morning, Rob.
 
ROBERT COLE – Otago University student
Hi.      
 
SUSAN          Were you promoting eugenics in any way, shape or form with this paper?
 
ROB               This is not a eugenics paper, Susan.  What we’re talking about here is a screening programme – a screening programme which is currently occurring in New Zealand – and this is about a screening programme that promotes, like you said, a woman’s right to choose.
 
SUSAN          But the woman’s right to choose – there are not numbers in this country, but on overseas evidence, 90% of women who find they are carrying a Down’s syndrome child will abort.  So that will mean at some point fewer or maybe no Down’s babies.
 
ROB               I don’t think that there will ever be no Down’s syndrome— children with Down’s syndrome.  I don’t think that will ever happen.  There will always be abnormalities which slip through a screening procedure, and there’s always going to be women who don’t want to have screening.  Because screening is voluntary, you can opt in, you can opt out, and you can choose how far you go down the screening pathway.
           
SUSAN          I’m wondering, actually, if we— you know, to Mike’s point about Down’s and in your own report you talk about the lives that a lot of Down’s people have, that they have self-worth, they have love and they, you know, have very good lives.  Is it something we should be even trying to abort or breed out?
 
ROB               Some people are affected more than others.  This has impacts on the parent and on the child.  We’re not saying those impacts are necessarily negative or positive, but it’s up for the women to make that choice.  
           
SUSAN          It’s tougher for the parents; more work needs to go in.  It’s just a harder road for parents?
 
ROB               Well, I’m not saying it’s tougher, but I’m saying that they may need to provide their child with more support.  They may need to provide that support throughout life in some cases.  I’m not saying that that’s necessarily a negative thing.
 
SUSAN          Rob, do you think, you know, aborting Down’s babies, for example, leads us— and there’s more tests that we have, and I know you’re examining those tests less invasive for pregnant women – does it lead us down that slippery slope of designer babies?  You know, let’s choose the eye colour, let’s choose if they’ve got long legs, let’s choose the baby we want?
 
ROB               Prenatal testing has existing for Down’s syndrome and other disorders for over 40 years now, so this is not a new occurrence. That’s one thing.  Also, we choose these tests – whether or not to use them – in light of many different things, and it’s not necessarily because we’ve chosen one test we will then choose a whole range more.  I don’t think that’s the case.        
 
SUSAN          Thank you for your time, Rob.  A quick last word to Mike.  Well, Rob is very clearly not talking eugenics.  Do you take him at his word?
 
MIKE              Well, no, I disagree because, as I said before, eugenics is concerned with reducing the prevalence of people in a society based on a society’s perception of those people being disadvantaged.  And Rob’s used that exact word – the perceived disadvantage of the value of people with Down’s syndrome in our society.
           
SUSAN          Why so much do you want to save Down’s syndrome?  Can you give me a succinct answer on that?  Because to those of us without Down’s children, we wonder.
 
MIKE              Because they’re a natural part of our human diversity, and that diversity is a thread that connects human beings as a community and a society, and it’s a part of what we are and we’re all connected, and we should learn as a society to embrace every child as they are, as a human being that holds dignity like everyone else.
           
 
Susan Wood interviews Disability Commissioner Paul Gibson
 
 
SUSAN          Joining me now from Wellington, the Disability Commissioner, Paul Gibson.  Good morning, Paul.
 
PAUL GIBSON – Disability Commissioner
                        Morning.
 
SUSAN          So we’ve heard from Mike Sullivan’s group, who say that the report that Rob wrote was promoting eugenics.  Do you have any concern about that report?
 
PAUL             I do, not to the extent that Mike does.  I think Rob raises a few good points about women’s right to choose, about academic freedom and the rights in the international framework begin at birth.  But Mike raises some bigger points, which I think are less well understood than most people have engaged with.  We have moved on in the last few years.  We have the Convention on the Rights of People with Disabilities now, we believe all people have the right to dignity, and we can support all people to have great lives.  The level of support shouldn’t impact on it in that extent.
           
SUSAN          But the numbers don’t impact on that, do they?  I mean, there are fewer spina bifida babies these days, but they don’t get less care or get treated any differently.
 
PAUL             I think we could do better in terms of support, and that would make decisions for mothers, for families around pre-birth easier.  And some of the statistics, the information, we see that in the medical context, when people are supplied with information, 80-90 per cent choose to abort.  Now, I understand and I need to track this down further than when somebody has some personal relationship with a person with Down’s syndrome, either a family member or a friend, the figures are turned on their head.  80-90 per cent of people would choose to have that child.  That’s the kind of information that needs to be out there that assists people in making decisions. 
 
SUSAN          Saving Downs wants a law change.  They want abortion not to be legal on the grounds of a Down’s baby.  Is that something you would be supporting or looking at?  Because it is complex because Down’s is not specially named as a disability.
 
PAUL             We need to be having these debates wider throughout the country.  This is complex.  People have very strong views on it.  The word ‘eugenics’ triggers a lot of negative reactions for people.  To me, the right international comparison is perhaps around what’s happening in, say, rural India, rural China, where girl foetuses are aborted at a greater rate than others.  And we can see in the context of those societies that women are less valued, that families are under pressure if they don’t have a male son or something like that.  Maybe we need to transfer some of that thinking to recognise that we don’t value disabled people in our society to the same extent as what we should, what we aspire to as a free society, and that’s impacting on the proportion of terminations.
 
SUSAN          Have you got any concerns, as these prenatal tests get better and less invasive, and what we’re seeing is evidence coming out of Europe that the babies with, say, a cleft palate or a club foot are being aborted, and these are highly treatable things.
 
PAUL             I don’t think treatability is the issue.  I think Mike’s right when he talks about the dignity for all people, that we can and should be ensuring that we can give all people a good life and that we can support people to do that.  Also, medical advances, bioethical decisions and a rights context is a step behind medical advances.  We need to catch up, and all people involved in decisions across a political spectrum, within ministries need to be engaging with the most affected to understand their perspectives.  In the Down’s screening programme, there’s not the direct voices of people with Down’s syndrome.  We need to hear them and what they believe on these issues to frame up how society makes these decisions.
 
SUSAN          Thank you for this time this morning, Paul Gibson, Disability Commissioner.
 
PAUL             Thank you.

ENDS

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