It has been an awesome year for our social justice advocacy at Saving Downs, so this blog is all about celebration and praise for the great work.
In reflecting on what we have achieved, I am reminded of the reality that all great social justice causes take a long time to evolve, and success comes through many small steps. It took William Wilberforce a lifetime to abolish the slave trade, but abolish it, he did. His example is an inspiration for us. In his own words:
“You may choose to look the other way but you can never say again that you did not know.”
So a key area of our work has always been to raise awareness of the discriminatory and eugenic practice of antenatal genetic screening and disability selective abortion in New Zealand. Our work has had widespread media coverage in newspapers and mainstream TV news throughout 2012. People may choose to look the other way but they can no longer say that they do not know what is going on.
Another famous quote of William Wilberforce is:
“We are too young to realize that certain things are impossible… So we will do them anyway.”
And that is what we are doing. People said we wouldn’t turn this around, but we said – we will do it anyway, because we can. Our families deserve nothing less of us.
So let’s reflect on all those great results we have achieved over the last year and celebrate how far we have come. To put this in context, it looks as though we may well have stemmed what was a decreasing number of births of babies with Down syndrome in New Zealand as a result of screening and selective abortion. In fact we may have even turned the tide on this. From 2007 to 2010, there was an average of 52 births per year of babies with Down syndrome. In 2011 there were 60, the first full year after the infamous “quality improvements” that were introduced in March 2010. Its early days, and we must be vigilant, but this is promising and going in the right direction.
The scene was actually set back in October 2011, when Diane Belcher from Spina Bifida NZ and I met with David Rutherford, the Chief Commissioner of the Human Rights Commission (HRC) to discuss our concerns relating to the practice of antenatal screening for Down syndrome and other conditions. David kindly indicated a willingness to formally receive our expert opinion from a world expert on the Convention on the Rights of Persons with Disabilities (CRPD) in terms of that conventions application in the area of antenatal screening for disability. A formal submission was made in April 2012 and was supported by these seven disability advocacy organisations:
- Down Syndrome International,
- The New Zealand Down Syndrome Association,
- Disabled Persons Assembly NZ Inc,
- People First New Zealand Inc. – Nga Tangata Tuatahi,
- The Tiaho Trust,
- Spina Bifida Association of New Zealand, and
That submission asked the HRC to generally enquire into the New Zealand screening programme, develope an action plan where there are areas of conflict between the programme and the CRPD, and oversee and monitor the implementation of such an action plan. The submission has now been considered and we are expecting a formal response over the next few days. This has the potential to have many positive benefits. That seven disability advocacy organisations are supporting this initiative gives it much strength and credibility. I am confident that this will do well for our cause.
Also in April the New Zealand Down Syndrome Association (NZDSA) adopted a revised position statement on screening. This followed a membership review that was advocated by Saving Downs. The new position statement includes this:
“The NZDSA advocates that the primary goal of prenatal screening should not be to reduce the birth prevalence of Down syndrome in the population, but rather to improve prenatal health care and delivery care for the mother and baby”.
This was a significant shift away from what was previously a somewhat “sitting on the fence” position.
For the first time the NZDSA also adopted this position statement on terminations:
“The NZDSA does not consider Down syndrome in itself a reason for a termination”.
These are powerful advocacy statements that put a firm line in the sand and recognise that true advocacy is about people with Down syndrome. They are closely aligned to our own mission statement:
“To ensure that antenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through education, support and understanding.”
What we have witnessed here is a quantum, and most welcome, shift in advocacy from the NZDSA on this issue. That is a reflection on the lift in awareness in our community and the wider public on the discriminatory and eugenic nature of screening in our country. That is the strength in raising awareness around the issue. It was that same awareness that brought the seven disability advocacy organisations together for the CRPD submission to the HRC.
Also in April (man that was a busy month) Saving Downs made detailed submissions on the National Screening Unit’s (NSU) draft revised information pamphlets and guidelines for health practitioners in relation to the screening programme for Down syndrome. These documents are being revised because in 2010 a complaint from Saving Downs was upheld by the Health and Disability Commissioner on the unbalanced quality of information produced by the NSU.
Two key areas of our submissions are that pregnant women and their partners must be advised that:
- Participation in the screening pathway imposes more harm than benefit to their unborn child, through miscarriage and morbidity due to diagnostic testing, and
- That any benefit to the unborn child should be investigated as late as feasible in the pregnancy, to avoid harm.
We have also submitted that the NSU consumer pamphlet and guidelines be amended to recognise that an abortion on the basis of a diagnosis of an unborn child with Down syndrome is unlawful, as it does not meet the test of “a serious handicap” required under New Zealand law.
As part of the submission process the NSU has already agreed to move away from the routine offering of screening for Down syndrome to all pregnant women to simply advising them of the availability of screening. By changing the requirement for midwives and GPs from “offering” screening to simply “advising” pregnant women of its availability, the onus is on the parents to request participation, rather than it being a matter of routine pregnancy care. Midwives and GPs who are morally opposed to eugenics can exercise their right to conscientious objection and advise parents to seek the “service” elsewhere with no requirement to provide a referral.
This is a significant win for us.
Let me say that again. This is a significant win for us.
This is why it is a significant win for us. When the NSU ran training workshops on screening for Down syndrome in May this year, feedback from midwives and GPs indicated a growing opposition to the screening programme, on the grounds that the eugenic undertone is unethical. Doctors and midwives were challenging the NSU in the workshops, outlining concerns that the screening programme was unethical and devalued a vulnerable section of our community. Again we see a lift in awareness on the discriminatory and eugenic nature of screening in our country, by the very professionals at the coal face. It is very encouraging to know that we have these professionals not only sharing our concerns, but also speaking out and refusing to participate in the programme. Reports like this editorial in the Sunday Herald show how this change is recognised in the wider community as an important development in recognising the inherent dignity and worth of people with Down syndrome.
The training workshops didn’t actually go too well for the NSU this winter. The Nelson and Wellington sessions had GPs and midwives opposing the programme. The Whangarei workshop was cancelled after I turned up and asked to sit in on the session (I was invited to attend by our local midwives group). Attendees at New Plymouth had to walk pass the adults with Down syndrome handing out our factsheet about screening. In Tauranga, supporters who happened to have Down syndrome laid out our leaflets on the chairs whist the participants came in to learn about how to screen them out. Oh dear. That’s what happens when the NSU excludes us from such things.
Bizarrely, the training workshops were held in April, May and June whist the NSU was still reviewing the submissions on the proposed new guidelines. Even the New Zealand College of Midwives, who were contracted to run the training sessions, were left confused, saying this in their submission to the NSU:
“we are a little perplexed regarding the timing of the revisions of these resources”
They were perplexed because they were running training sessions on the draft revised guidelines for the NSU whilst the submissions on those guidelines were still being considered by the NSU. The NSU has advised that the new guidelines and pamphlets have now been completed and will be issued in December, some 6 months after the training sessions. We will blog those when they come out.
April was a good month for Saving Downs. The NSU training workshops were good for Saving Downs too.
In July I headed across the ditch to Melbourne to present our work to Right to Life Australia. As a group we do not get involved in the mainstream pro life/pro choice stuff. We focus on screening and the related issues of discrimination and eugenics, with abortion being recognised as the means of eugenics against our community. Where an organisation opposes eugenics and supports our mission statement, we are open to sharing our message. Right to Life Australia oppose eugenics, so I went to share the word. Our work was well received and the seeds planted for our work to be taken forwarded into Australia, where it is certainly needed.
Also in July the Prosecutor of the International Criminal Court (ICC) decided to initiate a formal preliminary examination into a complaint laid by Saving Downs against the New Zealand Government’s antenatal screening programme for Down syndrome and other conditions. This was an outstanding achievement in its own right as it indicated that the ICC was taking the complaint very seriously and that the case has sufficient merit to warrant comprehensive legal analysis.
In November the prosecutor indicated that additional facts and information are required to enable the ICC to have jurisdiction to proceed with further analysis. We are currently awaiting the new NSU guidelines and the outcome of the CRPD submission to the HRC before proceeding on the submission of further information in support of our case.
The complaint before the ICC has had widespread media coverage globally and is a powerful strategy to raise awareness around this important cause for social justice. I spoke about it on breakfast news on TV one.
In August we had our awesome seminar “Loving Every Child: Defying Eugenics”. Here is how one attendee described it:
“The whole seminar took me on a roller coaster ride of emotions that varied as wide and far as the speakers presenting, inspiration, joy, compassion, outrage, horror, disbelief, anger, admiration all churned together in a sometimes gut wrenching knot as I was enlighten of the full picture, the whole truth of this insidious screening process for Down Syndrome and Spina Bifida in New Zealand.”
See our blogs about the seminar:
The seminar coincided with the launch of our new web site. This has been a great success and we are approaching 10,000 hits. Social media is where it’s at for social justice causes such as ours. Our blog about Professor Stone, his role as an adviser to the NSU and his involvement in pregnancies involving Down syndrome attracted over 1,700 hits alone. That blog has been removed after threats of libel action, which we are not resourced to defend. It would have provided a great avenue for raising more awareness around this issue. It’s sort of funny though, we know what’s going on, they know what’s going on, and they know that we know, but we still get smoke and mirrors. This blog outlines how mothers are being encouraged to have late term abortions for Down syndrome in New Zealand. This is the real stuff folks, and why we have to keep up our important work.
In October I was privileged to visit Europe to support the Stop Eugenics Now initiative. This was a great opportunity to share our work and pass it forward. They are very organised and passionate about defending our community against eugenics in Europe and I look forward to seeing how their work unfolds.
So, that is where things sit after a year of successful advocacy in New Zealand.
The time is right now for other country’s to step up too. The situation internationally is serious and warrants a concerted and serious response to defend the life of those with the extra love chromosome.
I think our work can easily be carried forward in Australia as their policies and laws pretty much mirror ours.
The situation in Europe is serious with high screening rates and termination rates (85% and 95% respectively in France, so around an 80% birth prevention rate of all pregnancies involving Down syndrome there). Mainland Europe is, however, well placed to take the Stop Eugenics Now initiative forward. The UK seems to have a problem with the silent roar of the crowd from the disability sector. The UK National Health Service is paying out compensation for wrongful birth claims and allowing babies with disabilities to be left to die, and we hear very little opposition from the disability sector – that is a concern, they need to find their voice.
In America, the International Down Syndrome Coalition is doing wonderful work around their message that all life is precious. The situation is serious there though; there is no legal protection against eugenic abortion. The national Down syndrome organisations seem to struggle with advocating for people with Down syndrome around prenatal screening. Look at the situation around providing information pamphlets for screening. Firstly NDSS, NDSC and GDSF published the Lettercase pamphlet, but included a reference to an option for abortion where there is a positive diagnosis. That’s not advocating for people with Down syndrome (hint, go back and read the bit about the new NZDSA position statements). Then NDSC and GDSF produce a new pamphlet, with no mention of abortion (great start), but then collaborate with testing company Sequenom to distribute the pamphlet (major fail). Collaborating with a company that markets a test to enable births of people with Down syndrome to be prevented is not advocating for people with Down syndrome.
It is good though that they are all talking about it and are aware of the risks of the new testing regime opening up there. The sort of life affirming positive messaging that the International Down Syndrome Coalition is doing can only do well there in the US.
On a local note, look out for the Christmas edition of Oh Baby magazine in New Zealand that comes out next week. It features our very work and gets our message out to our key audience – expectant mums and dads with wanted pregnancies. And that reflects how far we have come, people know about our work, they want to share our point of view and we are featured in mummy magazines. That’s fantastic.
Finally, I would like to thank all our wonderful supporters. We are very fortunate to have a number of international legal and medical experts supporting our work. People are stepping up to do research, prepare web sites, run facebook pages, organise and fund seminars and generally roll around in the thick of hard core advocacy.
People said we wouldn’t turn this around, but we said – we will do it anyway, because we can. Our families deserve nothing less of us. And turning this around, we are.
As we enter the period of Christmas I hope that you will celebrate this time in a way that is true for you and that there is a spirit of unconditional love in all that you do.