An interesting debate has been sparked on screening and abortion by Richard Boock’s recent blog post both on the post itself and over at The Hand Mirror. Anti-abortion advocates have also weighed in, of course. This is an important discussion to have. As Anthea notes over on THM, pro-choice advocates don’t want to alienate those engaged in the disability rights struggle since we, too, oppose discrimination and the devaluing of any particular group. I think it’s worth remembering, too, that anti-abortion advocates want to take away the reproductive rights of all of us, including people with Down syndrome, and that anti-abortion campaigners don’t equal disability rights campaigners.
I thought it might be useful to post an article from ALRANZ’s August Newsletter on this issue that gives a bit of background about why this has become a hot topic:
Choice and Antenatal Screening
IN FEBRUARY 2010, the Ministry of Health introduced a new screening programme that included safer and better funded first and second trimester screening for Down syndrome (trisomy 21) and other conditions including trisomy 13 (Patau syndrome), trisomy 18 (Trisomy E or Edwards syndrome), neural tube defects, and some rare metabolic and genetic disorders. The screening offered is largely (but not entirely) state-funded, and is voluntary.
These changes have provoked opposition from anti-abortion advocates and concern from some disability rights activists. An alliance of parents of Down syndrome children and the antichoice group Right to Life (RTL) have been pursuing challenges to the screening programme, including to the Ministry of Health, the Human Rights Commission, the Health and Disability Commissioner, the Human Rights Review Tribunal and, most recently, the International Criminal Court at the Hague.
In November 2010, the group announced publicly it had applied to Robert Hesketh, the Director of Human Rights Proceedings, to represent them in an action against the NZ Government over the antenatal screening programme. While the director did make a decision on the matter, ALRANZ is unaware of the details of the decision as it is confidential to the complainants. The fact that the Human Rights Tribunal hasn’t been notified of a claim on the issue suggests both that the Director has declined to represent the group and that, to date, the group is not pursuing the matter independently with the Tribunal. This is supported by a comment from columnist Garth George in late November 2010 that the Human Rights Commission had brushed the group off.
Meanwhile, in June of this year, a group of 37 parents and siblings of children with Down Syndrome, and RTL, announced they had lodged a complaint with the International Criminal Court in the Hague. According to a report in The Northern Advocate, the man leading the challenge, Whangarei engineer Mike Sullivan (who featured in a “60 Minutes” segment in June) says the court has confirmed it is considering the complaint. According to a press release at www.savingdowns.com, “the prosecutor has been asked to investigate and intervene in the Ministry of Health’s antenatal screening programme as it persecutes against people with Down syndrome through the prevention of their births”.
ALRANZ opposes the current abortion regime under which the state controls abortion access through a set of narrow grounds, including the ground that targets “seriously handicapped” fetuses. (It’s worth pointing out that the group challenging the screening programme has argued that Down syndrome is not a serious handicap as defined by the law, and therefore “aborting an unborn child based on a diagnosis of Down syndrome is a crime under the Crimes Act 1961”. In addition, fetal abnormality is only a ground until 20 weeks gestation.) This singling out of the “seriously handicapped” by the abortion law is one more reason all specific grounds for abortion should be eliminated and New Zealand’s abortion law should be decriminalized, giving women the right to make their own abortion decision for their own reasons.
Claims that the screening programmes constitute ‘genocide’, ‘eugenics’, or ‘ethnic cleansing’, as some abortion opponents claim are exaggerated and offensive. This is certainly not to deny the societal pressure some women feel to both undergo screening and to abort fetuses identified as having disabling conditions.
As a pro-choice group, ALRANZ fiercely opposes any form of coercion in medical care, including coerced abortion and coerced pregnancy in all its forms, both subtle and overt, and will continue to advocate – as it always has – for adequate support for all pregnant women who choose to carry their pregnancies to term. Choice also means being fully informed about your pregnancy – something anti-abortion advocates frequently invoke in their efforts to introduce restrictive “informed consent” requirements for those seeking abortion. So why would they want to prevent women from accessing that information by shutting down antenatal screening programmes? The answer to concerns over the pressure to produce “perfect” babies is not to end antenatal screening, but to join with disabilities rights groups and others in fighting for a society that welcomes everyone, and gives each woman the freedom to make her own decision. As Dr. Marsha Saxon of the World Institute on Disability put it so well: “Real ‘choice’ must include the choice to have a child with a disability”. If that is not a reality for some women, the cause is not information but discrimination.
UPDATES: The Northern Advocate had a follow-up story in September that a decision by the ICC had yet to be made, but that the group was having talks with the Ministry of Health about its concerns.
Also, after this article appeared in ALRANZ’s August Newsletter, Mr. Sullivan wrote to thank ALRANZ for its advocacy for the right of people with Down syndrome to be free from discrimination, but pointing out that one part of the report was inaccurate, in particular this: “So why would they want to prevent women from accessing that information by shutting down antenatal screening programmes”? (The “they” referred to anti-abortion advocates in general, not to Saving Down’s in particular.) Mr. Sullivan noted that Saving Down’s do not advocate for the “shutting down” of antenatal screening, and re-stated the group’s position, which is that “genetic screening must not be used to prevent the birth of unborn children with Down syndrome or cause harm to any unborn child”.
ALRANZ asked Mr. Sullivan: “To achieve that goal, would your group want to see restrictions imposed on abortion services/access in general, rather than on screening? If so, what might such restrictions on abortion be?” Mr Sullivan replied by stating that the group “has no position on abortion access and rights”. So it’s still not clear specifically how Saving Down’s would go about achieving its goal. The other group involved in the ICC case is Right to Life, which advocates for a ban on abortion from the so-called “moment of conception”.
The only purpose of early routine antenatal screening for Down syndrome is to enable the birth of these people to be prevented, based on their biological identification and a discriminatory view that people with Down syndrome are somehow less human than others.
It is state funded eugenics, targeting a specific group of our community for birth prevention, based on a perceived attitude of having “life’s unworthy of life” due to their genetic constitution. The ‘disabled” are the only group in New Zealand specifically targeted for abortion.
It is eugenics, targeting a group based on their biological difference.
Savingdowns is an advocacy group of parents and siblings of children with Down syndrome, who oppose discrimination against the Down syndrome community. Our members are both pro-life and pro-choice and Savingdowns has no position on the wider abortion debate. What we oppose is the targeted persecution of our community through a screening programme specifically structured to identify and prevent the birth of children because they happen to have Down syndrome.
We have numerous documented cases in New Zealand of pregnant women being encouraged to terminate a pregnancy based on a diagnosis of Down syndrome or Spina Bifida and offers to allow babies to be starved to death after birth if they are “disabled”. This information is before a number of New Zealand and international agencies as evidence of eugenics in New Zealand.
The use of later term screening to enable safe birth outcomes and to support parent’s preparation is an appropriate use of technology. Early screening to prevent births is eugenics.
We are far from “bat-shit crazy”. We are parents who love our children and will stand strongly against those who devalue the lives of our children and promote eugenics. If you have an issue with our position, then debate our argument.
If Mr Boocks wants to attack us personally with abortion politics conspiracy theories and personal attacks, then that is a reflection on him. We will oppose all discrimination against our families.
Atleast we have established what ALRANZ supporter Boock thinks about the value of people with Down syndrome is his offensive and dehumanisng statement “I found not a single woman who was hoping to be pregnant one day with a baby with Down syndrome.”
Why not? Whats wrong with having a baby with Down syndrome Boock? Not a hint of eugenics eh, just dismiss them as something that is undesirable? I personally know numerous women who are happy to have a baby with Down syndrome. My wife is one of them. If you don’t want to aleinate the Down syndrome community, the first thing you need to do is show just a little bit of respect for human diversity, I won’t wait for the apology.
Further information on Savingdowns is available in our newsletter at http://issuu.com/savingdowns/docs/savingdowns_newsletter_december_2011
Mike Sullivan is right, parents with a foetal abnormality diagnosis are being directly encouraged to terminate their pregnancies and I should know I was one if them. My little boy was diagnosed at 20 weeks with Spina Bifida and like many other parents I personally know and many others the length and breadth of NZ we were told that our baby would be born brain damaged, paralyzed, have bladder and bowel control issues, be sexually disfunctional, the list of expected problems went on and on , oh and by the way we recommend you have a termination. The offer to terminate was given to one family I supported at … Wait for it 31 weeks gestation. The abortion laws in this country are a sham, disabled babies are targeted routinely never mind the fact that you are more likely to become disabled after birth by accidental means but gee whiz that’s ok but to be born disabled that’s just down right wrong ? I’ll tell you what is disabling, the attitudes of ‘able bodied’ people with disabled minds who can’t comprehend that we love our kids the way they are, they have enriched our lives in a way that no so called normal child could ever do and I wouldn’t turn the clock back not for one second. People should be very worried about prenatal screening for disabilities. In the UK babies are being aborted for having cleft lip and palate, heart conditions all treatable and manageable and in Australia there is a move to allow sex selective abortion of male babies in families where one child has autism. The UN sets clear standards expected regarding disability and children’s rights. Anyone wanting to do some research will find out like I did that these are ignored when two words cone together : disabled child and if anyone wants proof I suggest you look into a blog notdeadyet and if you think that the standard of care highlighted in the blog doesn’t happen in NZ I can assure you that it does and it disgusts me. Families deserve way more than this one minute they are expecting a baby who is loved and wanted the next they are having a foetus with problems … So what’s changed ? Implicit messages that disabilities are not welcome even though they can be given appropriate treatment (in most cases) and that they are ‘not healthy’ babies. Well I’m sorry my son is not sick, he has Spina Bifida but this does not define who he is or will be. And besides I love him just the way he is ….
I’m gonna shamelessly post essentially the same comment I posted on a similar debate over at The Hand Mirror…which is that I think this debate has a lot in common with the debate over sex-selective abortion. This is also a difficult one for pro-choicers because, as with abortion for so-called abnormalities, in some instances/societies, it springs from a particular group being devalued — females, those with Down syndrome. Then we are back to arguing, well, we need to work harder to make sure those groups are NOT devalued. Yes. But what do we do in the meantime about screening and abortion? I personally think that imposing restrictions are not what we should do in the meantime. But I imagine much more could be done in terms of info given at time of screening result that challenges stereotypes and prejudices, and doesn’t make assumptions. And just to add something based on this particular blog post about anti-choicers not being the same as disability rights peeps. True enough. That’s an assumption we shouldn’t make. But it’s also true that pro-choice people are not eugenicists. Look at some of Anthea’s comments over at THM .. pro-choice people obviously have a lot of concerns about the treatment of and attitude toward so-called disability. So disguising an opposition to pro-choicers in general (because you oppose all abortion rights) as being just about this issue is no fair. Just come out and say you oppose all abortion and want it banned, and be done with it (IF that is the case; I’m not referring necessarily to any commenters here, but other places I’ve seen this issue come up.)
“it’s also true that pro-choice people are not eugenicists.” Well Richard Boock certainly expresses eugenic views as does many of his supporters in their responses to the article, so your comment doesn’t hold true.
He calls us “bat-shit crazy”, thinks we are “making bizarre claims about a need to maintain the presence of children with Down syndrome” and observes that “I found not a single woman who was hoping to be pregnant one day with a baby with Down syndrome”. I guess they have put their line clearly in sand about how they see the value of people with Down syndrome.
Hm, questioning “a need to maintain the presence of children with Down syndrome”. Yes, a eugenic statement, and strongs hints of racial and biological hygience theories as well. He has well and truely crossed the line.
I see from your August newsletter that ALRANZ consider Savingdown’s comments that genetic screening is eugenics and genocide offensive. Here is what the developers of the new blood tests have to say on the subject:
“the cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease.”
Referring to people as a disease is Stage 3 of the 8 stages of genocide. Eradication (or extermination) is Stage 7. Denial is stage 8.
You work it out. We have and the ICC will.
I knew when I was pregnant with my son 18 years ago while living in the UK that he had Down syndrome. The pressure to terminate the pregnancy was overt and downright cruel. I managed to reisist the pressure and now 17 years down the track find myself saying thanks every day for having my much beloved son who brings the family love and joy and who I am eternally grateful to for having got me through some very difficult times recently; his empathy, his concern for me and his desire for me not to be in pain has been of enormous comfort. My battle against pre-natal screening started at my son’s 6 week post natal check up when I was informed by the GP that there had been a 100% detection rate of DS babies prenatally in the district. I asked to meet up with other mums and she said I couldn’t because of the 4 detected only my son had been born-the rest of the pregnancies had been terminated because the babies had DS. It was at that time that it
dawned on me that these babies must be getting wiped out in the UK and this was made quite clear to me when I witnesses a dearth of DS babaies at DS Support groups, Early Intervention Groups and had perfect strangers come up to me and say “Didn’t you have the test?” “Why didn’t you terminate?”
This is nothing to do with abortion or being pro-life, pro-choice or whatever-this is purely about discrimination against people with DS resulting in a 90% reduction in the DS population in all western societies; abortion is only the means of attaining this genocidal effect. Last time the DS community was discriminated against in this way was via Nazi gas chambers/experimentation/murder. THe vehicle used to wipe a certain sector of human beings out is never part of the “argument” when there are discussions around genocide-we don’t concentrate on what was used in the past be it machete against Rwandans, weapons in Vietnam, gas to kill the Kurdish population, gas chambers to decimate the european Jewish population….the focus is on the abhorrent and anti-human practise of genocide.
…I therefore cannot begin to understand why people say this “search and destroy” screening is not genocide/ethnic cleansing/eugenics-IT IS! And to suggest that stating this fact is “offensive”??? Why is it offensive? I don’t get it. To repeat- in our very own neighbourhoods DS people are being wiped out (using state funds and taxpayers’ money). Genocide.
Whats more-people knew what was going on in the Nazi death camps during the war (British Intelligence and so on-not just the poor local German populations who could not do anything for fear of having their familes killed) and we know that this targetting and destroying people with DS is happening once again, right here in NZ and right now. We need to face this fact. The wiping out of certain sectors of unwanted, devalued, vulnerable human beings is wrong and we must not let it happen again. Lest we forget!
PRESS RELEASE: Savingdowns condemns Richard Boock’s attack against the Down syndrome community
//THIS COMMENT WAS EDITED BY THE MODERATOR TO INCLUDE A LINK TO THE RELEASE RATHER THAN THE ENTIRE RELEASE. FOR REASONS OF KEEPING COMMENTS TO A REASONABLE LENGTH.// THE RELEASE IS AVAILABLE AT http://WWW.SAVINGDOWNS.COM //
“As Anthea notes over on THM, pro-choice advocates don’t want to alienate those engaged in the disability rights struggle”.
From the International Down Syndrome Coalition: “The IDSC members have been outraged about this since I posted it on Facebook”.
In relation to Boocks article, IDSC noted:
“If you read the last article we posted, we would just like to set the record straight. The IDSC is made up of religious people, atheists, agnostics, liberals, conservatives, independents, pro life, pro choice, anti abortion, women’s rights activists, post abortive, old, and young. ”
“The author of the last article we posted, assumes that those of us who are stating that it breaks our hearts that children are terminated because they get a diagnosis of Down syndrome while in their mother’s womb, are politically motivated or “bat-sh*t crazy”. If that is so, isn’t it ironic that we would have so many from both liberal and conservative camps talking about this issue, amongst us!”
And in summary “It was simply horrible and ignorant.”
Speaks for itself really.