I first heard about baby Leo and his dad Samuel Forest a couple of days before it blew up big on social media. In case you missed it, Samuel is bringing his son home to New Zealand after his wife abandoned them at birth in Armenia.

Samuel had contacted me saying that he urgently needed help to bring Leo home to Auckland, the city I grew up in. After establishing that he had the basics covered regarding support from the New Zealand authorities he went on to arrange for social media coverage of his campaign to muster some support. That quickly went viral on Friday when mainstream media picked it up, and he has been overwhelmed by the response to his appeal for help. Once things settle down we will work with our local Down syndrome community to ensure he is practically supported when he returns to Auckland.

Its days like these that make our mission so worthwhile. It is wonderful to see Kiwis and indeed the whole world responding with such unconditional love and compassion, as we build a culture of inclusion for our children.

The media have, however, focused somewhat on the adverse culture in Armenia towards those with Down syndrome. Many have reported that there is a context behind the mother abandoning her child. Now, that got me thinking about our mission, and our own culture of bias over here in New Zealand.

Now, don’t get me wrong. New Zealand has a strong culture of inclusion for our children, who enjoy free health care, education and social support on a relatively equal basis with others. There are areas to improve, but we are heading in the right direction. It’s not that long ago that our children were institutionalised.

In New Zealand, parents generally now don’t abandon a newborn with Down syndrome. They will be well supported and included in society. But off course, those babies have to be born to be included. And here’s the cultural rub. Here, in my own country the majority of babies with Down syndrome, about 55%, are abandoned before they are born.

So, I started to think about the cultural dichotomy of abandonment in Armenia and New Zealand. How would this story unfold if it were in New Zealand and not Armenia? Off course, we don’t know the full answer to that question. But here are a few things we do know. They apply to most (so-called) first-world countries.

The pregnant mother would have been routinely offered free prenatal screening for Down syndrome under a state sponsored programme directed towards detecting the condition in a pregnancy.

If she subsequently had a high chance screening result for Down syndrome, based on a blood test and ultrasounds, she would be offered a free diagnostic test to confirm a diagnosis.

If she had a confirmed diagnosis, she would be offered a selective abortion, paid for by New Zealanders. We don’t know whether she would have availed herself of the opportunity to abandon Leo before birth. We know that she may be encouraged to have an abortion by New Zealand medical professionals.

Mothers in these situations want to be pregnant. That is why they are receiving prenatal care. They deserve the same empathy and support in continuing their pregnancy that they enjoyed before an unexpected diagnosis. We can, and should have empathy for women in these situations.

Unfortunately, we know that in the majority of cases worldwide, a prenatal abandonment would be the outcome. The odds are well against the Leo’s of this world being born at all in first-world countries with national screening programmes.

We do know that Samuel Forest would have had no rights as the father of Leo if the pregnant mother chose a Down syndrome selective abortion.

Prenatal abandonment is our cultural norm, and widely accepted in many countries. And what we do is work for our children to be born free from discrimination.

So here is the rub. We rightly reject Armenia’s culture of abandonment, but we have our own cultures of abandonment. We just dress it up differently. We condemn one and endorse the other. That needs to change to build a culture of inclusion.

Off course, baby Leo’s story is fantastic, saved from being abandoned, destined for a better more promising life. It’s been leading news, and that’s excellent too. People have rallied behind Samuel because they see the value in his baby’s life and the brave choice he made in a tough situation. It’s a brave and right choice.

Father to father, and Kiwi to Kiwi, I will stand with Samuel and Leo to build a better culture of inclusion for our children. They deserve it.

And that is why we are in the business of saving those with Down syndrome. They have every right to be here, just like you and me. We need to become more ethical in these situations, remove the barriers of bias against our children, break down the culture of abandonment, and build an inclusive world for all.

A Wednesday morning, 0930 hours, and The Girl is not yet in school. My mood is as overcast as the weather outside. It is her six-monthly visit to the Thyroid Clinic at the UHW. As a baby she had an underactive thyroid which now has to be monitored. This is a common problem for kids who have Down syndrome (DS). Untreated, this condition can slow brain development. Treated, the doctors prescribe a daily dose of Levothyroxin to bring her back into balance.

The nurse takes The Girl’s details: height 112.4 cm (3’8″, The Boss was 3’6″ aged 12 so The Girl is a positive giant); weight 20.8 kg (3st 4lb, so she’s officially as heavy as Wookie our puppy). My daughter goes back to the play area to await the consultation. We talk and laugh nervously. The nurse calls us back when she is prepared: “Miss Evans, it’s time to take your bloods” she trills optimistically. The Girl stops dead in her tracks and her face whitens. In a LOUD, panicked screech she pitifully cries: “Pleeeease, I don’t like bloods, thank you”. It takes two of us to hold her steady while a third tries to draw the blood and a fourth waves toys around to little apparent effect. The Girl is wedged under my left arm. A nurse is straightening my daughter’s right arm and trying to hold her legs still. We had attended the clinic a week previously but, counting myself, there were only three of us available to hold her still and the nurses had failed to get any blood at all. So they told us to return in seven days when they would also have available a Play Coordinator.

She may be small but The Girl has an unbelievably strong grip. Her polite though loud request to desist has now morphed into a banshee wail of protest. The needle is not in yet. I imagine the assembled waiting room are all planning to do a runner – or call the police. We promise her stickers. I tell her I will order her a Princess Sophia cup with her name on it. The Play Coordinator promises her she can have a go on the iPAD. Despite Macbeth’s assertion that “if it were done when ’tis done, then ’twere well It were done quickly⁽¹⁾”, we are forced to take our time. Then again, killing Duncan was probably an easier task than taking bloods from this unwilling child.

‘Twas ever thus. She’s never liked bloods. To my shame, in extremis, I have even used it against her (“behave or we’ll have to take bloods in the hospital”) but I felt such a heel that I never used this negotiating tool (threat) again. The moment the blood-taking is finished and the plaster is on the tears dry up and she happily squeaks “look I’ve got a plaster” and holds her arm out straight at a 45 degree angle from her body, where it will remain until she forgets about it. This can take a while. The Boss says The Girl is a drama queen and takes after me. I stomp out of the room and slam the door. In fairness, I think she has a genuine fear, or at least a strong dislike, rather than attention-seeking.

But she was born for the stage even if she is not a ‘drama queen’. She loves performing. The Girl goes to ballet every Tuesday evening. She loves it. Her tutor is pleased with her. It can take kids with DS a little longer to master some movements; not because of intellectual deficits in understanding the task at hand, but because of low muscle-tone and control. Sometimes this never much improves; sometimes it does, allowing kids who have DS to reach the same levels as kids who do not. In ballet class before Christmas, there was a prancing, high-stepping run the kids would rehearse, diagonally across the room, which looked like an Arab mare doing elegant dressage. At home, The Boss would help our daughter practise this movement: “… this leg first, jump, kick; now that leg, jump, kick…” and so on. After a few supportive cries of “that’s it, you’re doing it well, good girl…”. The Girl piped up with “YOU do it Mammy“. The Boss has MS and her balance is not the best. In fact, their different conditions make mother and daughter almost perfect partners for this pas de deux. Her mother demonstrates… and The Girl let’s out a peal of raucous, ribald laughter: “mammy, you look like a horse”. She breaks down with belly-laughter. As do her parents. (Both girls know that if they ask me to demonstrate, I’d fall over my own feet.)

Moving on a few months. It is Sunday 6^th March and the Barinowsky School of Ballet is performing two ballets at the Memorial Hall in Barry. The juniors are representing Spring-time and the older children are portraying the Wizard of Oz. There must have been over one hundred children across the combined shows and many hundreds of parents and friends in the audience. The kids, without exception, were stunning. Dressed in their costumes they looked like the butterflies, flowers, rabbits and so forth that they were playing. Without exception they all looked radiant and performed in time with the music and one another, gracefully splitting into smaller groups in counterpoint to each other. There wasn’t a dry eye in the house and every parent and carer there had hearts overflowing with love and pride. And us? We saw our little one perform equally with her peers. She remembered and mastered her steps and movements with no quarter asked or given to her DS. She was ‘just’ another one of the 100-plus children all of whom stood out for their joy and the quality of their performance.

When we discovered in pregnancy that there was a high chance of The Girl being born with DS we were advised by medical staff to consider having an amniocentesis test. We felt that there was an element of unspoken pressure to this effect. The test would confirm the DS one way or another but would also increase the risk of a miscarriage. We wanted our child whatever her condition so refused the test. We felt that the medics were pushing for the test in order to allow, perhaps encourage, a termination of pregnancy, had DS been confirmed.

This morning, I came across a blog by Mike Sullivan(2), a spokesperson for Saving Downs, a New Zealand-based body whose mission statement is “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” (3). Looking at international data he concludes it “reveals a clear pattern of a widespread and systematic programme of birth prevention directed towards the Down Syndrome community”. When The Girl was an embryo I feared the unknown that was DS. I had no idea that The Girl would be the finest thing her mam and I ever did or will do. But she is. And it’s not because of her DS or in spite of it. Like over one hundred of her fellow ballerinas, it is just because she is a lovely/frustrating, wonderful/annoying, and life-affirming little madam.

As usual Shakespeare sums it up. She’s a ‘Player’ and the world is her stage (4).

You can follow Wyn on Facebook.

Wyn also blogs at Musings of a proud Dad.

(1)    Shakespeare W,  Macbeth, Act 1 Scene VII. http://shakespeare.mit.edu/macbeth/macbeth.1.7.html

(2)    https://www.savingdownsyndrome.org/birth-numbers-for-down-syndrome-point-to-widespread-discrimination-and-eugenics/

(3)    https://www.savingdownsyndrome.org/mission-statement/

(4)    Shakespeare W, As You Like It, Act 2, Scene VII. http://www.poets.org/viewmedia.php/prmMID/15740

The report from the Commissioners of the UK Parliamentary Inquiry into Abortion on the Grounds of Disability has been released today.

It is a momentous and historic moment in our journey to social justice for our community. In the accompanying press release, the Commission of Inquiry says that:

“The UK Government must review the Abortion Act and end the discrimination against unborn disabled children.”

That is pretty clear and direct. This is a clear recognition from a Parliamentary Inquiry that disability selective abortion is discrimination. This is a defining moment for our people as a formal cross-party Commission of MPs and Peers hears and acknowledges the discrimination that has been carried out against our community. Much good will follow from this acknowledgment.

The Commission goes on to say that:

“The current legislation is out-dated, allowing abortion for disabled babies up to birth and is in urgent need of reform. “

The inquiry has recognised an urgent need for reform. Fantastic!

This is an outstanding outcome. This is a major opportunity for social justice for our community. We applaud Fiona Bruce MP, the Inquiry Chair, and the Commissioners for this most welcome and important commitment to stop discrimination against the disabled community.

Fiona Bruce goes on say in her press release:

“…Parliament should consider at the very least the two main options for removing those elements which a majority of witnesses believe are discriminatory – that is either reducing the upper time limit for abortions on the grounds of disability from birth to make it equal to the upper limit for able bodied babies or repealing Section 1(1)(d) altogether.”

Section 1(1)(d) of the Abortion Act provides for abortion up to birth for disabilities, including Down syndrome. Repealing that law would be the abolition of eugenic abortions against our people. Saving Downs advocates on this position and we are absolutely delighted to see such a strong and just recommendation emerge from this inquiry.

That discriminatory law is the foundation for national screening programmes for Down syndrome, Spina Bifida etc in the UK, NZ, Australia and most European countries. Those screening programmes target our community for disability selective abortion.  

Such a change in law would be a defining moment for the Down syndrome community in the UK. It is also likely to have downstream effects in countries such as New Zealand and Australia, as the screening and disability selective abortion programmes in those two countries mirrors the UK ones.

The abolition of disability as a ground for abortion would ensure that the use of antenatal screening for Down syndrome would be restricted to providing life affirming care, another position that we advocate on.

Fiona Bruce made special reference to the Down syndrome community in her press release, referencing our own submission:

“The Committee also heard evidence that Down’s Syndrome accounted for around a quarter (512) of all Ground E abortions and that approximately nine in 10 (90 per cent) of babies diagnosed with Down’s Syndrome were aborted.

 Leading disability rights campaigner, Mike Sullivan of Saving Downs, called for the law to be changed as the condition was no longer considered to be “serious handicap”.  

 “The law should be amended to exclude Down’s Syndrome as it does “not meet the test of a ‘serious handicap’ since it is a mild to moderate developmental delay” and the decades of experience and research on lives lived with Down’s Syndrome prove beyond a doubt that Down’s Syndrome does not meet that criteria.”

We are delighted to have had the opportunity to contribute to the inquiry and influence positive change for our people.

Earlier this year Ann Furedi, the chief executive of the British Pregnancy Advisory Service was quick out of the block to criticise the inquiry, labelling disability “tragic” whilst endorsing disability selective abortion up until birth and revealing her discriminatory attitude towards the disabled. In our open letter to her we noted:

“This inquiry is exactly what the disability community needs: The removal of discriminatory laws against the disabled.

This inquiry is also exactly what parents facing an unexpected diagnosis need: A step towards a new life affirming environment where their children will be welcomed and supported with loving care and acceptance.

The time has come for the full recognition of human rights for the disabled and this inquiry is a welcome step in that direction. “

And the inquiry has delivered for our people big time on all of these counts. Time will tell how the recommendations develope into changes, but we can sure that this is a momentous and historic stepping stone towards full social justice for our community.

We extend our heartfelt thanks to Fiona Bruce, all the members of the Commission of Inquiry and all the brave and strong advocates who supported the inquiry with excellent robust submissions and testimonies that acknowledged the great travesty of severe discrimination against our community.

We will stand with you as we move forward to influence and secure positive changes for the full recognition of human rights for those with different abilities as a direct result of this ground breaking inquiry.

]]> https://www.savingdownsyndrome.org/end-discrimination-against-unborn-disabled-children-says-uk-inquiry/feed/ 9 https://www.savingdownsyndrome.org/an-end-to-down-syndrome-in-new-zealand/ https://www.savingdownsyndrome.org/an-end-to-down-syndrome-in-new-zealand/#comments Tue, 18 Dec 2012 04:08:33 +0000 https://www.savingdownsyndrome.org/?p=3489

This blog has been crossed posted from MercatorNet.com and has been reproduced with their kind permission.

As someone who now has an 8 week old baby, I have recently started reading a range of parenting magazines.  It is amazing how supported you can feel by people on a page who appear to have the same questions as you.  I was interested to find an article on Down syndrome screening in New Zealand among the pages of this quarter’s copy of OhBaby! magazine.  It was an article that for once seemed sympathetic to the heartbreak of abortion and gave voice to a mother whose Down syndrome child contributes positively to the community and lives a full life.

Testing for Down syndrome is now routine in New Zealand – something which you opt out of, rather than opt to have.  That means that fewer and fewer children with Down syndrome are being born.  Is that what the government hopes to achieve by funding a routine test?  Perhaps not, but that is certainly the effect and the implication that is evident to a young mother – it is certainly how I felt when I was asked if I wanted the test earlier in the year.

Concern is so great among some in the New Zealand community that they have formed an advocacy group called Saving Downs.  Many in the group feel that cleansing the population of Down syndrome is a type of genocide (I have previously spoken myself to a member of this group).   The OhBaby! article reports that Mike Sullivan, spokesperson for Saving Downs, has figures from an Official Information Request (the data is obviously not important enough for the Ministry of Health to collect) which show that around 54% of babies conceived with Down syndrome are aborted.

The article goes on to raise questions about possible prenatal screening for all sorts of conditions and abnormalities in the future – indeed will anyone get born at all?  The other concern is that the government will be willing to fund less and less treatment for children with screenable diseases as people point the finger at the parentswhos wrongfully chose to have their baby with “preventable” diseases in the first place and is now costing them money.  Our demographic outlook may be one ‘purified’ of anyone different .  It is scary that it is already apparent that there are fewer and fewer members of our community with Down syndrome.