Mike Sullivan: A father's plea on behalf of his disabled child

Mike Sullivan, founder of Saving Down Syndrome, with his daughter Rebecca.

Mike Sullivan, founder of Saving Down Syndrome, with his daughter Rebecca.

OPINION:  The BBC documentary a World Without Down's Syndrome?, which screened on Tuesday night on TVNZ, gave the country an insight into the challenges that the community of people with Down syndrome and their families face with the introduction of new cfDNA​ tests. These are projected to lead to a further increase in the number of children with Down syndrome "screened out" by termination.

The documentary was fronted by Bridget Jones star Sally Phillips, who introduced us to her son Olly who has Down syndrome, and her journey as she grappled with the introduction of the new tests.

As a father of a daughter with Down syndrome, the most poignant segment of the programme for me was when Sally visited Iceland, where 100 per cent of families who are given a positive diagnosis now terminate.

It is profoundly difficult to hear of the impact that these tests will have on the number of children who are born with Down syndrome, and to think of the repercussions that this will have on the way that my daughter and her peers are viewed by society.

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The advent of these new tests coincides with a renewed debate in New Zealand around abortion, with a strong push from abortion advocates to "decriminalise" our abortion laws.

Sadly lacking from this debate is discussion of the consequences that so-called decriminalisation would have on people with Down syndrome and other disabilities.

If we look to the handful of jurisdictions that have decriminalised abortion – China, Vietnam, Canada and two states in Australia – gestational time limits for disability-selective abortions have been removed and abortion for babies with disabilities are available right up to birth.

We saw a big backlash from the disability community in 2015 here in New Zealand, when the Greens announced their abortion "decriminalisation" policy. This would have increased the current gestational time limit for disabilities from 20 weeks, right through to term.

Not only did this policy send a highly discriminatory message towards the community of people with disabilities but also, if it became law, would see New Zealand fall foul of our international disability rights obligations, as the UN Committee on the Rights of Persons with Disabilities has consistently criticised countries that provide for abortion in a way which discriminates on the basis of disability.

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Thinking of my daughter, it is beyond belief that in 2017 in New Zealand we would see a clamour for the introduction of abortion through to birth for babies with Down syndrome and other disabilities.

Do the New Zealand public share my concerns? There has been very little polling around this issue so we don't have an accurate picture of where they stand on disability-selective abortion.

The only recent polling was commissioned by abortion lobby group ALRANZ, which had only one question in its poll relating to disability-selective abortion: It  asked respondents whether they supported making abortion legal "when the foetus has no chance of survival".

The poll did not state that abortion is already legal through to 20 weeks for disability or let those polled know that what making abortion "legal" actually entails, from ALRANZ's perspective, is introducing abortion right up to the full 40 weeks for children who have disabilities.

It was also misleadingly set up so that there was only one category for children with disabilities: the tiny minority of babies with potentially life-limiting disabilities who may not survive long after birth.

The results from the polling would probably have been very different if the actual proposals ALRANZ is pushing for were outlined. Even more had the fact been related that those who could be most commonly aborted up to birth under ALRANZ proposals are children with my daughter's condition, Down syndrome.

Because of the lack of reliable polling on this issue here, we need to look overseas to see where the culture in similar countries is moving on this issue.

UK polling released last week found that the majority now feel that disability should not be a grounds for abortion at all, with only one in three people thinking it is acceptable to ban abortion for gender or race but allow it for disability.

In Britain there has been a far more nuanced conversation about this topic, and we are seeing the population move towards seeking more, rather than fewer, restrictions on abortion for reasons of disability. This move in polling has occurred in parallel with the positive change in attitudes towards disability over time, and is also reflected in the moves in the national conversation and political consensus on this issue.

A 2013 UK Parliamentary Inquiry into abortion on the grounds for disability made a recommendation that Parliament review the question of allowing abortion on grounds of disability. This year, the Abortion (Disability Equality) Bill, brought forward by disabled peer Lord Shinkwin who was born with brittle bone syndrome, reached one of the final stages in the House of Lords.

Lord Shinkwin's bill sought to decrease the current gestational time limit for disability-selective abortion, received cross-party support, and was strongly supported by disability community and major disability rights organisations such as Disability Rights UK.

It is refreshing to see that many of the campaigners pushing for a change in the law are pro-choice, but can see the effect that disability-selective abortion is having on the community of people with disabilities.

This brings us back to New Zealand and where we should be focusing our efforts.

Do we as a society want to move to a position where we eradicate people with disabilities, as we are seeing with Down syndrome in Iceland, or do we want to follow the UK's lead where they are having an honest, evidence-based, conversation about this issue?

In 2017 I believe a progressive New Zealand can do better for people with disabilities like my daughter than introducing abortion up to birth and the strong discriminatory message that sends.

Let's put the focus on positive policy changes that will create a better future for people with disabilities and their families, and lead the world in showing how imaginative inclusion and caring compassion are the real and humane response to prenatal disability.

Mike Sullivan is the father of Rebecca, who has Down syndrome, and founder of international Down syndrome advocacy group Saving Down Syndrome.

 - The Dominion Post

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