Q + A - MARCH 31, 2013
SAVING DOWNES' SPOKESPERSON MIKE SULLIVAN AND OTAGO UNIVERSITY STUDENT ROBERT COLE INTERVIEWED BY SUSAN WOOD
MIKE 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.
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.