“Down syndrome has to disappear from society,” according to Hans Galjaard, in a recent interview about the new genetic blood-screen NIPT. In his “opinion” he does not take into account the fact that people with Down syndrome judge life better than you and I. Now, the UK government proposed the accurate NIPT be implemented to the NHS screening program.

Professor Galjaard is an influential geneticist and former Unesco member who, on behalf of the United Nations has advised countries all over the world on prenatal screening. Ideas like his have shaped national prenatal screening programs worldwide.

Most Western countries have national prenatal screening programs that single out Down syndrome as a “free choice” for parents. These national screening programs are not aimed at detecting gender, or genes for sexual preference or transgender. That would (rightfully) send the wrong message to society that they would not be equally valued.

Children with Down syndrome need more attention, on average. And that costs money, and effort. And health-care is expensive enough as it is. It puts extra pressure on families and society parents are reminded. Meanwhile nobody discusses what it means to a woman when she aborts her pregnancy mid-term and delivers a dead baby. Nobody mentions the mental and emotional struggle she faces in knowing she played a role in her unborn childs death. The emptiness she feels and cannot explain to her husband. The gap that often starts growing in her relationship or her mother instinct that is absent in a subsequent pregnancy. The hurt she feels every time a happy and healthy child with Down syndrome passes her by.

Magazines hail the new test as the holy grail to women’s reproductive freedom. And women ask each other: Did you get tested? And the women who don’t are asked: did you know it in advance? A question that is so much more than plain interest. Your child is “your choice.” Why does society have to put extra effort and money into your choice? And so, under the pretense of “free choice,” over 90% of women do what society expects of them. The freedom to choose has become the duty to abort.

My son has two sisters with Down syndrome. He helps them with their schoolbag, they let him know they appreciate him by cuddling him to bits. A better person for it. In our family everyone is involved in all activities, even if that means we have to put in extra effort, wait a little longer or change our routine all together. Everyone is equal and everyone knows they are allowed to be who they are. Isn’t that the only choice we have as humans?

About the author: Renate Lindeman is a Mother of two children with Down syndrome, writer, disability activist, a representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

Footnote:

Hans Galjaard may be an unknown name to most but he is widely known in the screening world. He was, and still is, a very influential geneticist who helped shape policies worldwide. He is mentioned in this PowerPoint presentation that is also very interesting. Already in the eighties they were working up to this moment: when genetic screening would become part of screening programs. They set the goal, made the agenda and identified obstacles and resistance from society. Of particular interest are slides 15, 24, 28 and 25. In the last one it is mentioned that “optimizing reproductive behaviour” will help reduce ”societal cost and burden.”

By Renate Lindeman

Fact: Screening negatively affects the lives of people currently living with Down syndrome.

Down syndrome is the focus of prenatal screening and selection programs worldwide. Down syndrome is also the least funded major genetic condition by the National Institutes of Health (NIH) despite being the most frequent chromosomal disorder. The two correlate and helps to shift funding and academic interest from research and development of treatment and programs aimed at improving lives of people with Down syndrome to screening aimed at preventing the birth of people with Down syndrome.

Even though Down syndrome does not cause inhumane suffering  (Myth 1), prenatal screening and selection won’t lead women to a greater reproductive freedom (debunked Myth 2) but instead increases pressure upon them, the prenatal genetic screening business is in full swing. What is driving this new genetic technology? Why did it so rapidly become the new ‘norm’ in routine prenatal healthcare globally?

The answer is simple: money.

In 2014 Belgian media reported, in a series of articles, on the plan by the Belgian Minister of Health to implement the NIPS (non invasive prenatal screening) as part of the publicly funded national screening program making it available to all pregnant women. Other countries (UK, The Netherlands, etc.) are considering similar scenarios.

Possibly an extra $630,000 is spend by public funded healthcare per prenatally diagnosed child with Down syndrome

Down syndrome, as the most common chromosomal variation, occurs approximately in 1 in 700 pregnancies. The costs of NIPS vary per country and region, but for calculation purposes an average of $900 per test is used, which means some governments are considering to fork out an extra $630,00 (700 times $900) per diagnosed child with Down syndrome to enable selection. In Belgium approximately 65,000 children are born yearly. If all these women choose screening, extra costs for the Belgian government amounts to nearly $60 million. Every year.

Besides having moral, social and ethical objections to this, from an economical perspective, is money spent wisely? A study from Norway finds a link between abortion and subsequent depression). According to Sølvi Marie Risøy, a researcher at the University of Bergen, selective abortion can “bring women at the limit of what a person can bear”.

This is not in the best interest of women nor something that usually comes up during counseling. Treatment for these women, loss of income, will greatly add to the long-term costs for society. If these millions would be invested in programs aimed at helping people with genetic differences (like Down syndrome) and their families, this would benefit everyone in society. Think of inclusive education for children with learning disabilities or creating more job and housing opportunities for adults.

In Asia, Europe and the Americas combined there are over a hundred million pregnancies yearly.  With an average cost of $900 per test, potential profits for the pharmaceutical industry developing dna-tests are huge:

“Looking forward, the market for prenatal and newborn genetic testing is projected to be worth USD 8.37 billion by the end of 2019, growing at a compounded annual growth rate (CAGR) of 26.9%.”

(For the latest news on revenues, shares and other financial tidbits on tests check out #NIPT).

Pharmaceutical industry slickly markets ‘peace of mind’ to expectant parents to sell their product and maximize profits. It is not surprising they have managed to distort a test aimed at eliminating a portion of society into a promise of life in ‘Harmony’. I can see expecting parents –only wanting the best for their child- swallowing the false promise of a perfect life based only on genetic information.

What I don’t understand is that so-called medical ‘experts’ and governments are so willing to pour millions into genetic screening programs that offer no health benefits but target people who are perfectly happy with their lives under the false pretence of ‘public health’.

We have to resist the fear that is cultivated by medical professionals, politicians and the pharmaceutical industry, to give birth to an ‘imperfect’ child. Down syndrome is not a ‘scary condition’ that causes suffering. The real danger are voices that claim our children need to be tested before we can decide ‘to start life’. It lies in a society that ‘cares’ less and exerts more pressure in our wombs.

Screening and selection doesn’t say anything about life with Down syndrome. It says everything about the society that we are.

About the author: Renate Lindeman is a Mother of two children with Down syndrome, Writer, Disability activist, A representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

By Renate Lindeman

Lakshmi may look young but when she speaks it is with a lot of experience.  Living in the Indian city of Kerala it is ambitious for a woman to find a job outside of the family home. Lakshmi is a teacher. She seems very independent until she is asked what her family thinks about her not having a son. It clearly is a sensitive issue.

Lakshmi says she is pleased with her two daughters but her parents-in-law, with whom she shares a house, want her to have a son. “They want someone to carry on the family name.“ Lakshmi admits she feels the pressure: ‘I have to live with my parents-in-law’, she says.

Just like many Asian countries India loves boys more than girls. A boy is a breadwinner, a protector, and an insurance for old age. A girl means economic liability and a poor status.

Do you think Indian women should have the choice to selectively abort unborn baby-girls (gender-selection) as part of routine prenatal healthcare?

If your answer is yes, please understand by doing so you seal the fate of women worldwide.

If your answer is no, please understand by doing so you agree prenatal selection is not a woman’s right or a free choice.

As discussed in the previous article, Down syndrome is not, according to the usual medical definitions, a serious condition. People with Down syndrome and their families rate life above average and screening does not offer health benefits. This means that offering screening and selection has to be the result of cultural inequality resulting in economic liability and a poor social status of people with Down syndrome. Much like women in India. Offering screening to enable selection will reinforce inequality and discrimination.

According to an old Indian proverb “eighteen goddess-like daughters are not equal to one son with a hump”. The culture that a son with a disability is valued more than daughters is reflected in selective abortion in this country. Especially in rural areas where the social status of women is very poor, entire villages exist where nearly no girls are born.

In Western societies a similar trend is seen for children with disabilities. Denmark was the first European country to introduce a nationwide prenatal testing program for Down syndrome in 2004. Other countries have adopted similar programs. Prenatal screening for Down syndrome is a routine part in most countries. Termination rates after Down syndrome is diagnosed, vary from 67% in the United States to 92% in Europe. According to the Copenhagen Post (2011)¹), Denmark could be a country without a single citizen with Down syndrome in the not too distant future.

Which life is worthier: a child with Down syndrome in Denmark or a girl in India?

Medical tests are not neutral. Every time a woman is offered testing it mirrors societal prejudices. Every time a woman ‘chooses’ selective abortion it reinforces negative stereotyping. What does a ‘woman’s freedom to choose’ mean when society believes handicapped people are lesser valued. Yes, women have the choice to refuse testing. But like Lakshmi, all women have to live with their families and in their communities.

I am a woman and a mother of one son and two daughters with Down syndrome. I am not an incubator of societal preferred descendants. My daughters are not a reflection of my ‘personal choice’ but they are full fledged persons who have equal rights in society. Just like women in India, people of a different colour, race, sexual preference or belief.

I expect governments to protect that right by fighting discrimination and fully supporting inclusiveness. They need to do that by protecting and investing in the lives of those  with Down syndrome, not supporting or allowing programs aimed at eliminating them  from society. This  is how we can ensure reproductive freedom and full choice. This  is my woman’s right.

About the author: Renate Lindeman is a Mother of two children with Down syndrome, Writer, Disability activist, A representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

Saving Down syndrome is proud to bring you a series of articles debunking the 4 most common myths surrounding Down syndrome, prenatal screening and selection, so you will never be lost for words again.

By Renate Lindeman

An inconvenient truth: people with Down syndrome are very happy being themselves.

If you asked my daughters April and Hazel what life is like (with Down syndrome), they would probably give you their undivided attention for a few moments. Hazel would likely start telling you about her friends in school, her little brother Olav, and her favorite foods and people in the world (babies). The story might get increasingly hard to follow and likely end in laughter and a high five. April will gaze at you solemnly from behind her glasses. Searching her brain for the proper words to express her feelings, she will be pensive for a while as in meditation. You will start to notice her delicate features and the freckles on her cheeks and tiny nose. Then, as she wraps her small arms around your shoulders, a smile will radiate like a ray of sunshine from behind that earnest look.

My daughters don’t suffer because they have an extra chromosome. Sure the road to fluent speech, flawless writing, and coordinated bicycling is often filled with obstacles, but they don’t let it ruin their day, much less their lives. They are consumed with more important stuff like Saturdays’ dance recital or Sundays’ soccer game. Of course, like any kid, mine can drive a mother insane. Hazel can be stubborn as a mule and April can take an hour to get dressed. But they also have the ability to simply accept their flaws and those of others without judgment and to fully enjoy life. In my opinion, that makes my daughters perfect.

For all those who hide behind the noble phrase that ‘prenatal selection of babies with Down syndrome ends human suffering’ I personally would like to throw this inconvenient truth on the table: people with Down syndrome are very happy being themselves. In fact, research on a population here and here shows people with Down syndrome and their families rate life above average. It is the outside community that judges their lives poorly.

A few decades ago Down syndrome was seen as a serious life limiting condition and people with Down syndrome were often housed in institutions. Many were in poor health, had limited self-care and social skills, couldn’t read, and died young. It was thought their problems were caused by their DNA and unavoidable. This offered justification for some to offer prenatal screening en selecting Down syndrome to women who were considered at an ‘increased risk’.

         Down syndrome could be considered an ‘acceptable genetic variation’.

Social and medical advances have profoundly changed what it means to live with Down syndrome and other disabilities since then. Today people with Down syndrome are living longer and healthier lives and it seems clear they were limited at least as much by institutionalization, low expectations, lack of education and poor health care as by their DNA. They are increasingly finishing high school, living more independently and holding jobs. In fact, by usual medical definitions and standards, Down syndrome cannot be considered a ‘serious condition’. Think average IQ, life expectancy and other life limiting factors. In today’s framework, Down syndrome could be considered an ‘acceptable genetic variation’.

Rather than discussing ending prenatal screening and selection for Down syndrome, the opposite is happening: from technologically limited tests offered to few, prenatal screening is now routinely offered to all women in the United States and abroad while advanced genetic technology is introduced. Misperception and outright denial of the advances made for this group of people sharing similar physical characteristics abounds in media and medical ‘opinions’. From assumptions about financial dependence, low earning power and generating suffering. By targeting a portion of society (Down syndrome) for elimination it creates and reinforces stubborn outdated stereotyping in society.

If we, as a modern society, value the right to be ourselves, un-judged and free to make our own choices, we should wish the same freedom and rights for our off-spring.

My daughters are not a mistake or a reflection of my personal choice but full-fledged persons and a crucial part of society. They may not become the first female president of the United States (but who will?), it doesn’t mean they have other, important, talents. So often are people with Down syndrome accredited with the ability to be open, accept life, live in the moment and to spread love, simplicity and joy. In fact, people with Down syndrome, as a group, were nominated for the 2014 Public Peace Prize for their ‘real ability to diffuse peace around them’.  These human traits are needed more, rather than less, in today’s fast paced, money and self-centered society.

Eliminating people with Down syndrome from society doesn’t say anything about their inherent worth. It says everything about societies inability to appreciate or accept human differences as part of the whole.

“We all need to feel wanted for the person that we are. So take good care of each other” Fred Penner, Canadian Children’s music performer sings. That’s the message we should pass on to our children.

About the author: Renate Lindeman is a Mother of two children with Down syndrome, Writer, Disability activist, A representative for Saving Down syndrome and spokesperson for Downpride. Renate is the former president of the NS Down syndrome society.

By Renate Lindeman, the spokesperson for Dutch parent group Downpride’

Yesterday, the picture of a young boy with Down syndrome, tethered to his bed, went viral on the internet. The picture above was taken in 2006 during MDRI’s investigation of Serbian institutions. In 2007 when the investigation was made public he was moved to a Serbian foster home.

When this picture first emerged on the internet in February 2015 the following comment was made: “Although the picture above is haunting, please know the child is living with and well loved by a family in the US. He also has continued contact with his birth family. Reece’s Rainbow*) was involved in the adoption.”

Besides the much read and liked comments like ‘sad’ and ‘heartbreaking’, that were left yesterday someone questioned: ‘how could parents do this to their own flesh and blood’?

In Eastern Europe – and many other places in the world – parents do this ‘to their own flesh and blood’ because the birth of a child with a disability is cause for disappointment. When their child is born there are no congratulations and the doctor and nurses will tell parents that their child will never achieve anything meaningful. That their child will drag them down financially. That this child will ruin their and their families lives. That they will never be able to give their child the proper care so they better hand it over to authorities, who know what is best for all involved. Parents, trusting the experts, who often deal with similar situations, hand over their newborns to the States’ care. The child often ends up abandoned in some (mental) institution thousands of miles away from the home of his birth parents.

In Western society we are much more civilized and screening programs are offered to ‘detect anomalies’ as routine part of prenatal healthcare. If a child is diagnosed with a disability such as Down syndrome, there are no congratulations and the doctor and nurses will tell the parents that their child will probably never achieve anything meaningful. That their child will drag them down financially. That this child may ruin their and their families lives. That they may never be able to give their child the proper care so they better consider……………the option to terminate pregnancy.

Many parents, trusting the experts, who often deal with similar situations, decide over the future of their unborn child and abort. Termination rates after Down syndrome is diagnosed vary from 67% in the US to 92% in Europe.

And just because we do not have pictures like the one shown above, doesn’t make it a lesser injustice. Eliminating people with disabilities from our lives, either before or after birth, stems from the inability to view disabled children as equally human. The effect on society remains the same.

Children should not be placed in institutions because they have a disability. Unborn children should not be exterminated because they have a disability. That doesn’t say anything about the inherent worth of these children. It says everything about the society we live in.

Children with disabilities are just like – well – children: they need love, a home, school, inclusion, friends, apple-pie. And if they are given that, these children with disabilities will thrive just like –well- children. They will achieve something meaningful and they will enrich your life and that of your family. They will be loved and they will love you. Don’t just take my word for it. Take the words of millions of parents of children with disabilities around the world.

I hope that this little boys’ picture will aide in achieving awareness that children with disabilities belong in society, as well as question authorities’ ability to know what’s best for families.

#prenatalselectionhurts

*) Reece’s Rainbow has helped numerous institutionalized children find their ‘forever’ family. Many of their stories start like the one of the little boy shown in the picture and continue as children living happy, healthy and full lives with their adoption family.

By Renate Lindeman, the spokesperson for Dutch parent group Downpride‘

Academics call for non-invasive prenatal test (NIPT) carried out at about 10 weeks to be made more widely available’, the Sydney Morning Herald reports. This test can, with reasonable accuracy, detect Down syndrome in early pregnancy from a single drop of blood taken from the mother. Experts warn however, that early testing may also lead to sex-based terminations.

What I don’t understand is this: if all children possess the same inherent worth according to UN declaration of Human Rights, then why is selection of female babies viewed as gender-discrimination but termination for Down syndrome hailed as a woman’s right in Western culture?

What is wrong with babies with Down syndrome? Are they financially dependent? Do they not hold high paying jobs? Do they bring suffering or other alleged burdens? Before you answer ‘yes’ to any of these questions, realize that to do so is to seal the fate of female babies in Asian culture. According an old Indian proverb “eighteen goddess-like daughters are not equal to one son with a hump”. Just as a daughter’s birth is often a cause for great sadness in India, the same can be said for the birth of children with disabilities in our culture.

When the doctor told me my newborn had Down syndrome there were no congratulations and a social worker quickly whisked me away to another room. When I shared the news with family and friends there was mostly silence; interrupted by tears.

While the ghost of Down syndrome causes initial disappointment, this feeling doesn’t reflect real life experiences of most families living with Down syndrome. It certainly does not reflect my own experience in parenting a child with Down syndrome. Seeing the world through my daughter’s eyes; eyes that don’t judge or see flaws in others but simply accept and find delight, has enriched my life beyond expectations.

When it comes to the ability to create openness and simplicity in a group, people with Down syndrome score high. When it comes to being loyal towards their employer, taking pride in their job or performing the same tasks for 30 years with the same enthusiasm as was felt on the first day on the job, people with Down syndrome are unrivalled. Independence, a high IQ and the ability for economic achievement may be considered important in our culture, but this does not mean the talents of people with Down syndrome are not needed in our lives and communities. Who decides which human traits are unwanted in society and need to be singled out for selective abortion?

What really goes on during so-called ‘informed decision making’ is this: every time woman is asked if she wants genetic screening for Down syndrome it is suggested that screening can tell something about the quality of life that is expected. It cannot. A dna-test does not pick-up on birth defects or other health issues that may, or may not be the result of an extra chromosome. Every time a woman is asked if she wants to continue her pregnancy following a diagnosis, she is confronted with the poor social status of people with Down syndrome. Societal relations may be the most important factor in a woman’s individual choice.

In another part of the world, less poor than India, money is spent researching the effects of selective abortion on women. According to Sølvi Marie Risøy, a researcher at the University of Bergen, selective abortion can lead women to “the limit of what a person can bare”. She would like to see a new debate on prenatal diagnostics and selective abortion. So would I.

Referring to the complex position of women in Indian society, Elizabeth Bumiller wrote in 1991: “May you be the mother of a hundred sons”. While gender discrimination remains a problem in rural India, in cities the status of women is rising. Giving birth to a girl no longer causes disappointment for many modern couples. As birth ratios are changing accordingly it becomes blatantly obvious that selective abortion is not driven by individual preferences for boys but by societal pressure due to the poor social status of girls. Genetic screening and selection have turned out to be just other, be it technologically advanced, tools in the ancient practice of suppressing women.

I am not the mother of a hundred sons. Nor am I the mother of genetically ‘perfect’ children. No woman is, or at least no woman should be seen as, an incubator of societal preferred descendants.

I am the mother of one son and two daughters with Down syndrome. I have a right to give birth to a child, unjudged, who may be different. A child whose ‘worth’ may not be expressed in economic achievements. It is my right to know that this child will be treated as an equal in society and I expect governments to protect that right by fighting discrimination and supporting inclusiveness. They need to do that by investing in the lives of those with Down syndrome, not supporting programs to select them from society. This is how we can ensure reproductive freedom. This is my woman’s right.

She describes very thoughtfully how she went through the “devastating” process, “living the nightmare” of a possibility that her child might have Down syndrome, and came to realization that all children are perfect gifts. I appreciated her honesty and I found her path to acceptance beautiful.

The comments, however, had that vibe… that must have been horrible, so glad you have a happy ending, so glad your child will be perfect.

On a Down syndrome pregnancy message board I frequent, this is something that comes up a lot. People will write that they are devastated and scared because of a marker on ultrasound or elevated levels on their blood tests. We all respond with encouraging stories about how much we love our kids with Down syndrome and how much joy they bring to our lives. Then a few weeks later when the NIPT comes back negative–no Down syndrome–their report is often something like this: thank God my child is normal! the results came back, my baby is healthy! thanks for helping me with my horrible nightmare, but my baby is just fine! See ya never!

I do get it, and a few times I have been the friend who comforts another on undesirable test results. One happened when a friend and I were both pregnant for the first time. You hear the news, your face becomes somber, and you think about how awful it must be for them. Of course, my response was different after Kyle was born. I remember telling one friend my thought that, “if only all parents could be so lucky to have a child with Down syndrome.”

So maybe we can stop thinking that a positive prenatal indication of Down syndrome is the end of the world? How about instead of getting that somber, sympathetic face and feeling sorry for our poor friends, we change our way of thinking? How about when we hear someone has a prenatal indication of Down syndrome, we think about the parents we know who have a child with Down syndrome and the joy they experience. If you don’t know one, you’re reading this, so you can take my word for it:

Our kids are gifts, our kids our important members of our families, our kids have bright futures, our kids have amazing abilities, our kids change our perspectives, and our kids teach us how to enjoy life.

I am talking about Down syndrome, but I am also not. Read the above sentence again. It goes for a baby with or without Down syndrome. And just like that blogger realized, our kids are perfect gifts, no matter what.

This post originally appeared on for Elysium.

Wyn Evans of “Musings of a Proud Dad : beating Downs barriers” shares an article that was recently published in the Cardiff Times in Wales.

As I write these words the two biggest news stories are Baby Gammy and The Yazidis. At present, the facts of the Baby Gammy story are disputed. But they involve an Australian couple who used a surrogate mum to give birth to twins. The couple took home the girl, and left the boy, who had Down Syndrome (DS), with the surrogate. The couple were annoyed that prenatal testing hadn’t been done soon enough to allow the boy to be aborted. The second big news story is the plight of the Yazidi people in Iraq. They have been forced to flee their homes and towns, because of murderous barbarians calling themselves ‘Islamic State’. It is reported that families are being buried alive, women taken as slaves, and myriad other atrocities. In the UK, the common mood of parliamentarians and public alike is to retreat into our shells, possibly giving a green light to some food-aid being airlifted in. My eight year old daughter has DS and I’ve done all I can to keep these two news items from her.

Norwegian film-maker, Margreth Olin tells a true story. As a child she had a favourite uncle who she loved very much. He was the only adult who always had time for her; he forever made her laugh with his jokes and had money in his pockets to buy her ice-creams. One weekend, aged eight or nine, her parents told her she was to go on a bus trip with her uncle. As other passengers got on or off, Margreth found that they would stop and look pointedly at them both. Some looked with suspicion, “as if they had never seen an uncle before”, others with sympathy. Some nodded, smiling at her, as if she needed comfort being with him. And then “he leans up against me and, whispering, says ‘you know Margreth, I’m not like anyone else’”. Olin remembers thinking “you are better than them and one day I’ll show them”. Her uncle had Down Syndrome. She decided there and then that she would grow up to tell the stories of Outsiders in her society.

Similarly, Icelandic writer, Sjón, in ‘The Blue Fox’(1) tells of an Icelandic girl, Abba. She has Down Syndrome, is abandoned by her priest father, barred from his church, and is kept in a shed in a backyard in Reykjavik. She is discovered by an Icelandic student returning from Copenhagen University and full of new ideas. He stays and eventually takes Abba under his wing, to the opposition of her father. Sjón wrote the story to compare things that we take for granted today with the old days, “when you really had to fight for the humane elements in our society”. His point is that sometimes societies have to bring in fresh ideas from abroad. When he was researching the book, in 2003, Sjón discovered that people with DS had “ceased to exist…almost no children with Down Syndrome were born in Iceland”. This shocked him for he had assumed that his society had reached a certain level of ease; that those born with DS were fully accepted into society. For him, the benchmark of civil society is how those with disabilities are accepted and integrated.

Once again from Norway, is medical ethicist, Bjørn Hofmann. In a recent BBC Radio 4 programme(2), he considered whether some new medical interventions, such as pre-natal screening of people’s genomes, might lead to a new generation of outcasts. He explained that using a few millilitres of a pregnant woman’s blood allows scientists to analyse a foetus’s DNA and genetic make-up. This begs difficult medical and social issues. Individually, it might be about sanctioning termination of pregnancies. On a societal level it might be about screening-out whole groups of illnesses deeming them to be less than worthy of life. That might involve DS, or autism, or people with depression, or, well, you get my drift. Who will draw up the rules for this brave new world? Who will decide who’s in and who’s out? In Norway, the Biotechnology Act(3) defines a key principle, as follows: “…to ensure that medical applications of biotechnology are utilised for the benefit of everyone in an inclusive society, … without any discrimination on the basis of genetic constitution”. The purpose being to ensure that society has room for everybody.

It seems to me that this is about Insiders and Outsiders. Prenatal testing has the potential if used without a really solid legal and ethical framework of doing away with whole classes of people. Right now, across the world, prenatal testing is leading to kids with DS not being born. Here in our own back-yard, The Boss and I were pressured by clinical staff to have an amniocentesis so that we could, if necessary, abort The Girl. We refused. Then, as other clinical ‘markers’ made it clear that our baby girl was likely to have DS, clinicians once again subtly reminded us what a difficult life she and we would have and, ‘you know, there are other options still open to you’.

Thus, even before she was born, some people who you’d think knew better regarded The Girl as an Outsider who didn’t deserve a crack at life. Baby Gammy wasn’t wanted when it became clear he was less than perfect. The Yazidis are the ultimate Outsiders, neither Christian nor Muslim, but living slap, bang, wallop in the middle of Armageddon(4). Margreth Olin’s uncle was an Outsider. He received sad sympathy or outright mistrust from strangers. Despite being a local born and bred he looked different, may not have been quite as sharp as some, may have seemed a bit simple; reminding people of their own imperfections. You can hear the words if you listen closely enough: “Oh him. Yes, he’s got that syndrome. You know the one. Can’t be much of a life can it? Not very productive is he? Bless”.

I am reminded of the story of Ruth in the Bible. A family from Bethlehem in Judah, moved to Moab. The two sons married Moabite girls, one of whom was Ruth. Soon the patriarch and sons all died leaving the sons’ mother, Naomi, and her two daughters-in-law. Naomi told the girls to return to their families while she would return to Judah. One of the girls did as asked, but Ruth, this foreigner, stuck with the old woman and went into the strange new land, saying (5) “…for where you go I will go…, your people shall be my people and your god my god”. Ruth, the Outsider, acts as the perfect daughter. It’s a story used to convey a message and the final twist in the tail delivers the lesson. Ruth marries into the kinfolk of the dead men and delivers herself of a baby boy who would become the grandfather of King David (of Goliath fame). David, that seminal figure in Jewish history and mythology, partly owed his existence to one who was literally an Outsider.

Why can’t more of us, more often, stand with Ruth and say “your people are my people”? Is it because your god is not my god – mine being the true god, yours being lesser and, probably not a god at all? Margreth Olin reasoned that in our hearts we are all the same, that it matters not which country we were raised in, and that our duty is to defend such values for everybody. Bjørn Hofmann argued that such values don’t apply only to geographically diverse peoples but equally to those who are medically, genetically, or socially different to the majority. And Sjón brings it all full circle with perhaps the most telling point of all: “the more you focus on keeping the strangers outside, it’s more likely that a stranger will be born amongst you”. Fear breeds fear, hatred fosters hatred. Without being open to the influence of the Outsider we will never reach our full potential.

My daughter, The Girl, has Down Syndrome. I’m hopelessly biased of course, but she is such a fine human being, perhaps because of her imperfections. Every day with her is special and new. I have been worried that if she sees today’s news she would be upset. But maybe I should hold her hand and watch it together. After all, she and those kids like her (whether or not they have DS) have got every chance of living together as one people if they avoid the mistakes of their parents? Don’t they?

1. The Blue Fox Paperback – 7 Mar 2008, by Sjón  (Author), Victoria Cribb (Translator)
2. For a wonderful discussion involving Margreth Olin, Sjón, Bjørn Hofmann, and others, see BBC Radio 4, “The Forum at Risor Festival, Norway”; http://www.bbc.co.uk/programmes/b04d4wh2
3. Act of 5 December 2003 No. 100 relating to the application of biotechnology in human medicine, etc Cf. earlier Acts of 5 August 1994 No. 56 and 12 June 1987 No. 68 (http://www.ub.uio.no/ujur/ulovdata/lov-20031205-100-eng.pdf)
4. http://www.telegraph.co.uk/news/worldnews/middleeast/iraq/11024987/Mount-Sinjar-Iraqs-mountain-of-death.html
5. Book of Ruth 116-18, The Bible, Revised Standard Translation

New Zealand Disability Rights Commissioner Paul Gibson

In a world first, Saving Downs has secured a commitment from the New Zealand Human Rights Commission (HRC) to address prenatal discrimination against the Down syndrome and wider disability communities.

The HRC has agreed to give high priority to this work under their monitoring role for the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The work will include the right to life, prenatal disability screening, euthanasia and other bioethical issues. Most importantly, the perspectives of disabled people and their families will be central to the work.

This is a milestone event in our advocacy. It is a great foundation for moving ahead with positive change for our community and we are delighted with this outcome. As the project is framed within the CRPD, this work can immediately be brought forward into the wider international arena for those countries that have ratified the CRPD.

Saving Downs first raised concerns with the HRC back in 2009, with a number of submissions outlining our concerns that the targeting of those with Down syndrome for selective abortion breached human rights under the Treaty of Rome. At the time, the HRC did not address our concerns. Ultimately this led to laying a formal complaint before the International Criminal Court in June 2011. That complaint has subsequently been placed on hold pending the outcomes of the current work with the HRC.

A breakthrough came in September 2011 when David Rutherford was appointed Chief Commissioner of the HRC. Before taking up his new role, David was the managing director of Special Olympics Asia Pacific. He also held positions as Chairman of Special Olympics in New Zealand and was on the Special Olympics International Board. At the same time, Paul Gibson was appointed as the inaugural Disability Rights Commissioner.

Suddenly, things were looking promising for advancing disability rights in New Zealand around our area of advocacy. So, in October 2011 Saving Downs and the Spina Bifida Association of New Zealand met with David Rutherford to discuss our concerns relating to the practice of antenatal screening in New Zealand and the impacts on the Down syndrome and Spina Bifida communities. At that meeting the Commissioner agreed to formally receive our detailed submission on the application of the CRPD in relation to antenatal screening for disability.

Seven organisations resolved to formally support that submission including Down Syndrome International, the New Zealand Down Syndrome Association and People First. The group submission requested the HRC develope an action plan where there are areas of conflict between the screening programme and the CRPD. In November 2013 six Autism advocacy groups joined the group submission.

The HRC have now reviewed the submission and have developed a work plan around bio-ethical issues and disability that will be a high priority moving forward. The details are outlined in this letter to Saving Downs.

Firstly, the issue of the right to life will be addressed. The Independent Monitoring Mechanism (IMM) on the implementation of the CRPD has released it’s monitoring report for the period July 2012 to December 2013. The full report includes the following piece on Article 10 Right to Life:

Article 10 – Right to life

The Disability Convention requires governments to reaffirm that every human being has the inherent right to life. Governments shall take all necessary measures to ensure disabled people effectively enjoy this right on an equal basis with others.

The right not to be deprived of life is included in the New Zealand Bill of Rights Act.

Issues such as euthanasia, pre-natal testing, termination of pregnancy, access to medical care and assisted suicide are often discussed in the context of the right to life.

These matters can inspire strong passions which may polarise people within the community. This can make it difficult for a disability perspective to be recognised or heard. However, bioethical and legal issues like these can be of particular significance for disabled people. In many cases, the potential impact of changes can be far greater for members of the disabled community than for other population groups.

The voices of disabled people, their families and Disabled Person’s Organisations (DPOs) need to be at the forefront of national debates in relation to these matters.

Recommendation 8

That high priority be given to the perspectives of DPOs, disabled people, and their families in relation to policy development on the right to life and bioethical issues which have a high impact on disabled people and/or public perceptions about disability.

The IMM is made up of HRC, the Office of the Ombudsman, and the Convention Coalition of Disabled Person’s Organisations (DPOs).  DPOs include People First, who strongly support this work and others such as Disabled Persons Assembly (DPA). The other groups involved in our joint submission are not in the Convention Coalition.  People First are in a strong position to take this issue forward with government, and will be engaging with us in this regard.

The government has chosen to nominate Robert Martin, a person with an intellectual/learning disability and a leader within People First, to election for a position on the CRPD, a first in the world.  If Robert is successful in the 2016 election, he will take up a position on the committee and increase his, and the New Zealand disability community’s, influence on the monitoring and interpretation of the convention.

Secondly, the HRC will now have bio-ethics and disability rights as a priority for the next two years. The Disability Rights Commissioner explains:

The Commission has bio-ethics and disability rights as a priority for the next two years. The extent and speed of bringing this work to fruition depends on attracting partners and funding.   

As part of this I am working with Strive, a group of young leaders within the Down Syndrome Association, introducing as sensitively as possible the issues around screening, encouraging those who want to be involved to learn more and to be able to speak from their own lived experience perspective, and respecting those young leaders who choose not to be part of such a conversation.  

I have been engaging with the Donald Beasley Institute (DBI) (which focuses on intellectual disability research with a strong rights approach) on how to use their expertise on bio-ethical issues, and with DBI and Otago University on developing a centre for research excellence on disability issues, and developing and sustaining a disability research program, along with other interested organisations and tertiary institutions.

I have met with the Otago Bioethics centre in response to their article on Down Syndrome screening. They are willing to engage with the Commission more regularly, including bio-ethics conferences. They were interested in being part of a dialogue on screening, including DBI, people with Down syndrome and their families, as the Commission would like to host such a dialogue in Dunedin as part of our bio-ethics work.

 I have met with international lead thinkers, including Michael Stein (Harvard Disability law Project leader) and Janet Lord, who are both interested in doing further work on this issue.  With New Zealand nominating Robert Martin, who Michael knows and respects from their experience in the development of the UNCRPD, there is an increasing interest in how New Zealand develops its responses to bio-ethical issues and screening, and an increased willingness to support New Zealand and be part of finding a world leading response consistent with the CRPD.

Thirdly, Paul Gibson has presented a paper to the HRC’s Board framing a number of bio-ethics and disability rights issues that have come to the Commission.

On prenatal disability screening:

Sometimes this is framed as a conflict of rights and values. While abortion as an issue, and polarises people, the disability community spanning both sides have disentangled the pro choice/pro life debate from the issue of prenatal disability screening, and also recognises the voices and opinions of those who reflect and represent the impairment/condition being screened for. Most decisions at government or personal level are not informed by such perspectives. The disability community thinking is reflected in the CRPD committee decisions and some international legal opinion, while other legal opinion differs. Downstream effects of the screening program include bullying, trauma, and pressure on children, pregnant women, and women who have or haven’t aborted.

On life ending decisions:

Death with dignity, euthanasia, either self determined, or determined by family or clinicians.  A private members bill is likely to be reintroduced to parliament after the election. The conflict between the right to life and the right to self determination goes back to the origins of human rights thinking in the tauiwi western whakapapa. Views are passionate and polarised, and strongly influenced by a particular personal experience. Also newborn disabled children may be deprived of the necessities of life for treatable injuries and conditions, when an adult with a similar condition would always be treated and rehabilitated. Though for some disabled people they say death with dignity is a legitimate goal to pursue, they still say of greater priority is legislating for and ensuring life with dignity consistent with the CRPD.

And on “voice and identity”:

The economics of health rationing and Genetic research are advancing and leaving behind the ethics and rights based responses to the questions raised. Prevention of impairment is assumed to be desirable. Disabled people’s voices are seldom part of the decision making mix. Underpinning a disability rights perspective is identity, many of us might choose to be someone different, and many of us would choose who we are but prefer to live in an inclusive world. 

We are delighted to reach a point where the HRC has listened to, heard and acknowledged our important concerns and is taking positive action. We look forward to continuing our work with them and People First in building a culture than honours and respects the diversity of all humanity, including those with Down syndrome and other genetic variance.

Our families deserve to be fully accepted and included on an equal basis with others. We are delighted to play our part in building a better world for our families.

Thanks must go to the Disability Rights Commissioner, Paul Gibson, who has shown such commitment, leadership, endurance and integrity for taking this project on within the commission. Thank you Paul.

And thank you to all our supporters for walking with us in this journey.

Do you have a loved one with Down syndrome?

Have you ever wondered how much they are worth?

$74,768.91

Give or take a bit in kiwi dollars – that’s 38,000 British Pounds at today’s exchange rate.

That’s according to this report for the New Zealand National Screening Unit (NSU) that was prepared by Health Outcomes International (HOI). The NSU engaged HOI in 2007 to:

  “…inform its decision as to whether a national antenatal screening programme for Down syndrome should be established in New Zealand.”

That programme was implemented in 2010.

The report is quite long, running to 68 pages. It mostly covers technical aspects of screening and the practicalities of delivering a national screening programme.

It also talks about the costs effectiveness of running a national screening programme for Down syndrome.

Warning: It’s not nice.

“A further assumption regarding the establishment of formal screening programmes is that the programme will be cost beneficial for the population, and the health system.”

and

“….the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”

  “It is cost effective as the estimated cost of avoiding the birth of a baby with Down syndrome (about 38,000 pounds) is substantially less that the lifetime costs of care.”

“while some may feel that the cost of about 40,000 pounds sterling to prevent the birth of a baby with Down syndrome to a woman under 30 may be expensive, it is low compared with the costs of caring for someone with Down syndrome.” 

Which is uncomfortably close to this:

“60,000 Reichsmark is what this person suffering from a hereditary defect costs the People’s community during his lifetime. Fellow citizen, that is your money too.”

That is from the Action T4 euthanasia programme. Eugenics. See how they both talk about the costs (read “burden”) of care as a justification for not having them amongst us.

The report also talks about the benefits of screening. They actually mean effectiveness:

“Down syndrome screening programmes are effective in detecting Down syndrome abnormality.”

In the section on “benefits of screening” there is no identification of any therapeutic benefit to the one with Down syndrome, or the mother.

“Reproductive decisions” are listed as a benefit:

Termination is mentioned 17 times in the report.

Bottom line. If you have a child with Down syndrome, they reckon they’re worth $74,768.91, more or less. That’s how much of our money they are happy to spend to stop our children being born.

That’s not nice.

It’s not just the NSU in New Zealand. Most of the research links back to the United Kingdom. THE UK National Health Service have “The Decision Planning Tool (DPT)” This is:

 “… an instrument to aid Trusts, commissioners and health professionals plan, improve and monitor Down’s syndrome screening practices by assessing the costs and effects of first and second trimester screening strategies.”

There’s that word cost again. But this time, the costs and effects are measured by a thing called TOP: Termination of pregnancy, on sheet 8 of their spreadsheet:

With a default rate of 79.3% of all pregnancies involving Down syndrome.

Bottom line. A termination rate of 79%, more or less, makes an effective national screening programme.

That’s not nice.

We like to be nice. Our position statement on screening says:

 “We acknowledge that for some, antenatal screening and diagnostic testing may reassure parents or help some parents prepare for the birth of a child with Down syndrome. We believe that any antenatal screening and diagnostic testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome.”

It looks like others may have a different agenda.

It would seem to be more about money and termination rates.

Or eugenics.

We would prefer unconditional love, acceptance and respecting basic human dignity.