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