Saving Downsyndrome https://www.savingdownsyndrome.org Advocating for people with Down syndrome Tue, 23 Feb 2016 11:41:36 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.2 “Down syndrome has to disappear from society”, according to Hans Galjaard https://www.savingdownsyndrome.org/down-syndrome-has-to-disappear-from-society-according-to-hans-galjaard/ https://www.savingdownsyndrome.org/down-syndrome-has-to-disappear-from-society-according-to-hans-galjaard/#comments Thu, 21 Jan 2016 21:05:16 +0000 https://www.savingdownsyndrome.org/?p=4480 baby with Down syndrome
By Renate Lindeman

“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.”

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PRESS RELEASE – Don’t screen us out https://www.savingdownsyndrome.org/press-release-dont-screen-us-out/ https://www.savingdownsyndrome.org/press-release-dont-screen-us-out/#respond Sat, 16 Jan 2016 08:49:51 +0000 https://www.savingdownsyndrome.org/?p=4471 12507658_330921020411829_47885685802931116_n

Down syndrome advocates launch “Don’t screen us out” campaign urging UK Government to halt new screening proposal.

The number of babies with Down Syndrome aborted is set to to increase following a decision released this morning.

UK Down’s syndrome advocates have today launched the new campaign, Don’t Screen Us Out, after the UK National Screening Council (UKNSC) released its decision to recommend the implementation of a non-invasive prenatal testing (NIPT) technique called ‘cell-free DNA’ (cfDNA), which may lead to a profound reduction in the number of children born with Down’s syndrome.

Spokeswoman for the Don’t Screen Us Out campaign, Lynn Murray said:

“While the screening itself is being heralded as a move to reduce the number of miscarriages associated with invasive amniocentesis, the UKNSC have glossed over the fact that their pilot study predicts cfDNA screening will detect 102 more babies with Down’s syndrome every year. Latest figures tell us that 90% of babies who are prenatally diagnosed with Down’s syndrome are aborted. If we are to apply this percentage to these newly detected babies, this would mean an increase of 92 abortions for babies with Down’s syndrome annually and an overall decline of reported Down’s syndrome live births by 13%. Such an outcome is likely to have a profoundly negative impact on the Down’s syndrome community”.

The Don’t Screen Us Out campaign calls on the government to halt the implementation of cfDNA screening and to introduce reforms which would support those with Down’s syndrome and their families.

The release of the decision coincides with the recent release of a UN report from the International Bioethics Committee (IBC) of the United Nations Educational, Social, and Cultural Organisation (UNESCO) issuing a stern warning about the drive to adopt NIPT in national screening programmes, “the potential ethical disadvantages of NIPT can be summarised as routinisation and institutionalisation of the choice of not giving birth to an ill or disabled child”.

The Governmental enabling of such an approach, also violates the UK’s treaty obligations to the UN Convention on the Rights of Persons with Disabilities (CRPD) to make sure that its health policies – including antenatal screening – are informed by and reflective of a ‘social model’ understanding of disability. As indeed does the haphazard medical support for parents whose child is diagnosed with fetal disability, which leads to pressure on parents to abort their babies with disabilities such as trisomy 21 and causes the conditions that drive the low proportion of Down’s syndrome births. This constitutes a failure to implement section 23, subsection 3 of the CRPD for early and comprehensive support to families with children who have Down syndrome.

Mrs. Murray explains:

“Greater support is necessary for parents who are expecting a child with Down’s syndrome. For example, there is a lack of clarity in communicating the diagnosis or prognosis of fetal disability, and the presumption from many medical professionals that parents would opt for abortion. This is worsened by the fact that there is also limited information and support for the option of raising a baby with Down’s syndrome”.

The cfDNA test should not be implemented into the UK Fetal Anomaly Screening Programme at this stage. Given the state of the medical system as it currently exists, cfDNA may only worsen the culture of informally eugenic anti-disabled discrimination that exists in our screening programme health services.

Don’t Screen Us Out are urging members of the public to visit www.dontscreenusout.org and to use the site to contact their MP urging them to write to the Secretary of State for Health, Jeremy Hunt, asking that the government halts the introduction of second-line cfDNA screening.

ENDS

Lynn Murray, Spokeswoman, Phone: (0044) 1313340133, Email: savingdowns@gmail.com.

For more information on Don’t Screen Us Out campaign, see our website www.dontscreenusout.org.

Further information:

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Now for some truly inspiring news from Down under … https://www.savingdownsyndrome.org/now-for-some-truly-inspiring-news-from-down-under/ https://www.savingdownsyndrome.org/now-for-some-truly-inspiring-news-from-down-under/#respond Thu, 03 Dec 2015 11:03:33 +0000 https://www.savingdownsyndrome.org/?p=4461 On 3news.co.nz you’ll find the inspiring story of Katrina. It is a story for all those students about to sit their end-of-year exams.

Maybe you’re procrastinating, going on Facebook, hanging out with your mates, when really what you need to do is just study. However, Katrina Sneath is one woman you would never catch mucking around when she should be studying – she’s already passed NCEA level 2 with flying colours, despite having Down syndrome.

But that’s just the start of her long list of achievements. See it here – The inspiring story of Katrina Sneath
(Found by Renate Lindeman – picture © 3news.co.nz)

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PRESS RELEASE: New UK Downs test should be deferred due to ethical concerns https://www.savingdownsyndrome.org/press-release-new-uk-downs-test-should-be-deferred-due-to-ethical-concerns/ https://www.savingdownsyndrome.org/press-release-new-uk-downs-test-should-be-deferred-due-to-ethical-concerns/#comments Sun, 01 Nov 2015 08:20:07 +0000 https://www.savingdownsyndrome.org/?p=4447 press release
PRESS RELEASE 1 OCTOBER 2015 – For immediate release

New UK Downs test should be deferred due to ethical concerns

An international social justice advocacy for people with Down syndrome is calling on the NHS to defer any decisions on the proposal to introduce a new pregnancy test for the condition until a full ethical review is carried out in accordance with international disability rights obligations.

Saving Down Syndrome UK spokeswoman, Lynn Murray explains:

“The NHS is proposing the implementation of the new cfDNA, or NIPT, test into the national screening programme.  The proposal is likely to have a significant negative impact on the Down syndrome community, including further reductions in births. However the NHS has failed to consider the ethical implications of the proposal on our community. This fails to meet the UK’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD)”.

Mrs Murray explained that an area of particular concern is that people with Down syndrome have not been consulted on the proposal, despite the clear impact it will have on their basic human rights, and this being a specific requirement under the CRPD.

Saving Down syndrome is also concerned that the NHS proposal indicates an increase in overall harm despite messaging that the test is “safer”. The NHS’s own consultation documents indicate a net increase in pregnancy loss of 67 per year, with an increase of 92 involving Down syndrome and a decrease of 25 other pregnancies.

“We are particularly concerned that there is a discriminatory assumption that the reduction of miscarriages is positive (and it is) whilst an increased loss of Down syndrome pregnancies is not a concern, and would even seem to be an objective given the focus on increasing detection rates”, explained Mrs Murray.

Mrs Murray concluded that  “There are no positive health benefits being offered under the proposal. While we would welcome anything that improves the quality of care for pregnant women, introducing NIPT as part of a national screening programme to “improve performance” actually means that more unborn babies lives may be lost with no other health benefit”.  


ENDS

Lynn Murray, UK Spokeswoman, email: savingdowns@gmail.com

Click here for a copy of our submission on the NHS proposal.

For more information on Saving Down Syndrome, see our website www.savingdownsyndrome.com and Facebook page www.facebook.com/savingdowns

 

Further information:

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Welcome to Holland https://www.savingdownsyndrome.org/welcome-to-holland/ https://www.savingdownsyndrome.org/welcome-to-holland/#comments Thu, 03 Sep 2015 22:28:14 +0000 https://www.savingdownsyndrome.org/?p=4434 We have to tell you something bad.

About what the doctor said.

You are not getting a brother or a sister.

It makes us sad.

This is the start of a children’s book. It is not just any children’s book but it was written by a mother looking for a way to explain to her young son why he didn’t get a sibling after all. The writer aborted her unborn son after he was diagnosed with Down syndrome. This was in Holland in 2013.

More recently the second largest Dutch newspaper published a full-page article titled: “LOVE GOES DEEPER THAN GIVING LIFE”, an interview with parents choosing abortion after Down syndrome was diagnosed.  The couple explains they wanted ‘a healthy child’. According to them a child with DS will take up 80% of attention in the family, if not more, leaving less than 20% for siblings. The article goes on citing wrong numbers on abortions and other incorrect information and opinions.

Dutch artcile

 

The Dutch Down syndrome society was silent.

The Dutch Down syndrome community felt the pain soon after the article appeared. Yes, this IS about our children. For decades we have been fighting for equality in a fight that is still an ongoing struggle. An article like this surely sets us back years. Only 7% of children with Down syndrome are included in mainstream education and Holland has not yet ratified the Declaration for Rights of Disabled Persons. The Netherlands is not a poor country struggling to feed or educate its’ citizens. In fact Holland was ranked third richest country in the world in 2014.

Maybe this explains why the country is the first in the world considering to permanently fork our an estimated extra 100 million Euros per year to offer genetic screening aimed at Down syndrome as part of public healthcare. It does not explain why the country is so keen on enabling selective abortion after diagnosis. 74% of Dutch women choose to terminate after Down syndrome is diagnosed. Apparently this number isn’t high enough to some and maybe this is why Dutch media ‘informs’ the public with negative stereotypical opinions instead of citing research on a population that proves people with Down syndrome do not suffer. In fact, people with Down syndrome and their families have an above average appreciation for life.

Holland is my country of birth. How I long for the country Emily Perl Kingsley describes in her essay in 1987 after her son Jason was diagnosed with Down syndrome after birth. A country of tulips, windmills and Rembrandt. How I long for the mild climate of love, acceptance and belonging that used to be part of Holland. But Holland is different now. It has become a place of prejudices, discrimination and death.

Times have changed folks. Stay on the plane and change your ticket.

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.

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Myth 4:. Health, development and happiness are set in stone in our genes. See the bigger picture Mr. Darwin. https://www.savingdownsyndrome.org/myth-4-health-development-and-happiness-are-set-in-stone-in-our-genes-see-the-bigger-picture-mr-darwin/ https://www.savingdownsyndrome.org/myth-4-health-development-and-happiness-are-set-in-stone-in-our-genes-see-the-bigger-picture-mr-darwin/#comments Wed, 02 Sep 2015 08:03:07 +0000 https://www.savingdownsyndrome.org/?p=4430 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.

PictureMyth4

By Renate Lindeman

The science behind prenatal genetic selection fails to recognize that cutting off a portion of our human species that we consider ‘less worthy’ will alter the humanity of the species that live on.

A woman drags her son, who has a range of health and mental issues, to a doctor. ‘Doctor Freud’, she starts, my son abuses drugs, is kicked out of school, cannot do anything for himself and hurts himself’. ‘Poor upbringing’, is the doctors’ verdict. Insulted the women walks into the office next door for a second opinion. ‘Doctor Darwin, my son abuses drugs, is kicked out of school, cannot do anything for himself and hurts himself’, the woman says. ‘Bad genes’, concludes Darwin, ‘nothing can be done’. At her wit’s end with the hopelessness of the situation she decides to give it one more try and walks in the door of a third doctor.

The pernicious assumption that a poor development, health and well-being is set in stone, in our genes, has been the driving force behind the development of prenatal screening programs in the United States and abroad for the past few decades.

In 2011, the latest triumph in prenatal testing was introduced: the NIPT (Non Invasive Prenatal Test). This DNA test can, with reasonable accuracy, detect Down syndrome in early pregnancy from a single drop of blood taken from the mother. Hailed by medical professionals as the Holy Grail in prenatal testing, the NIPT has quickly spread across the globe. But, while genetic fetal testing is technologically very advanced, the ideology upon which it is based, is outdated, discriminatory and dangerous to the human species.

Genetic testing claims to predict the future and quality of life based on genetic knowledge alone. In doing so it underestimates factors like lifestyle, education, inclusion, and love, in achieving a healthy, rewarding life.

Angela Bachiller is a counselor in a Spanish town.

Tim Harris is a restaurant owner.

Garrett Holeve is an MMA fighter.

Pablo Pineda is an Actor, who also holds a diploma in Teaching and a BA in Educational psychology.

Angela, Tim, Garrett and Pablo also have Down syndrome. They were able to become the persons they are today, because they were given a chance, included, educated, and their lives celebrated.

In the sixties many children with Down syndrome and other disabilities were housed in institutions. It was assumed that all their problems were caused by their DNA.  Many grew up to become dependent adults with poor health and a short life-expectancy.  Today we know the truth that these children were limited by low expectations of others, a serious lack of medical care, education and cruel segregation from their families and society.

This over reliance on genetic factors alone prejudices other important opportunities.  Rejection by schools without looking at the individual, unfair disadvantages from insurance companies, again segregation and simply not getting a chance.  In its most radical form it deprives unborn babies of life:

 “the United Kingdom National Down Syndrome Cytogenetic Register (NDSCR) reports that in 2012 92% of women with a positive prenatal diagnosis terminated the pregnancy. Similar numbers prevail in the US.”

This is not healthcare.  That is not progress. That is an outright denial of the advances made by people with Down syndrome.  This is discrimination in its most extreme form.

The debate about whether ‘nurture’ or ‘nature’ is more important has not, even after a century of inquiry, lead to a definitive answer.  Now, Epigenetics, the new kid on the science-block is dissolving the imaginary line between the two.  Epigenetics is scientifically proving neither is more important: human development and our physical, mental and spiritual well-being is largely the result of a complex interaction between our genes and our environment, the biosphere.

Our development, health and spiritual well-being is largely affected by the choices we make.  Humans change the expression of most of their genes by diet, exercise, and their social and spiritual life.

Science is asserting what Angela, Tim, Garrett and Pablo and billions of other people are doing daily: changing the course of their lives for the better by making better choices.

So if making better choices affects our live for the better, poor choices do the opposite. Geneticists, to their surprise, are finding epigenetic change can be passed down from parent to child, one generation after the next.  Poor choices such as dumping large quantities of toxins in our environment will, therefore, cause adverse epigenetic change. Research and surveillance agencies worldwide are reporting an “increasing occurrence of congenital disorders that lead to mental retardation or dysfunctioning body organs”. Hawaiians spike in birth defects are linked to the intensified use of pesticides in genetically modified crops.

The choice is stark.  Are we simply going to let industry and governments unjustifiably screen out all babies with identifiable differences from our communities? Or are we going to advocate for a sustainable future which is clean, tolerant and inclusive? A future that respects the individual but sees and prepares for the big picture in the biosphere we all live in, and are treating as expendable.

I have two daughters with Down syndrome.  Their lives are not defined by the presence of 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.

My daughters have an uncanny ability to accept their flaws and those of others without judgment and still fully enjoy life. By doing so they spread love, simplicity and joy to the people around them.  That makes my daughters perfect human beings and wonderful company.

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 than ever in today’s fast paced, money and self-centered society.

 The science behind prenatal genetic selection fails to recognize that cutting off a portion of our human species that we consider ‘less worthy’ will alter the humanity of the species that live on.

With the imminent onset of tests that efficiently and affordably analyzes the whole genome of an unborn baby, fetal genetic testing should concern us all. It is the beginning of something we don’t know the ending of. If this technique, leads to acceptance of genetic screening and selection for Down syndrome, you don’t have to read sci-fi books to know more human species will be singled out for selection in the future. Who will be next? People with lower IQ’s, a different sexual preference or psychological predisposition, your off-spring?

Oh and by the way that woman and her son came out of the third doctors’ office an hour later with a new lease on life. The son gave up drugs, went back to school and is now the chef and owner of a restaurant serving the finest, organic foods. His mother manages the waiting staff.

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.

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Ohio bill advances Down syndrome rights https://www.savingdownsyndrome.org/ohio-bill-advances-down-syndrome-rights/ https://www.savingdownsyndrome.org/ohio-bill-advances-down-syndrome-rights/#comments Thu, 27 Aug 2015 21:48:57 +0000 https://www.savingdownsyndrome.org/?p=4420 150824081931-ohio-abortion-down-syndrome-bill-becker-interview-newday-00002114-full-169

The prenatal testing landscape has changed profoundly since Roe vs Wade, it is time the law is changed too. It’s time to advance the rights of those with Down syndrome, to advocate for them, and to hear their voice about their freedom.

Saving Down syndrome welcomes and supports a proposed disability rights law in Ohio addressing prenatal prejudice against our community. House Bill 135 (HB135) would prohibit abortions due to a diagnosis of Down syndrome.

It has led to a bit of on-line drama in the Down syndrome “advocacy” community though, with a number of commentators opposing the ban and endorsing a right to selective abortions for Down syndrome. Ethically, that’s not okay for people with Down syndrome. And, ethically, it’s not okay for women who are under health care for the loving, nurturing and trusted support of their wanted pregnancies.

We need to hear the voice of people with Down syndrome and understand what they think about their lives. Do they support being targeted for abortion? And advocate for them. Because this is about their freedom and nothing else. And we can, and should, at the same time acknowledge that the dignity of a mother’s unborn child does not change with a diagnosis of Down syndrome. The focus on health care and the love and support of that mother and her wanted pregnancy shouldn’t change as a result of a diagnosis either.

As we have stated previously in relation to the proposed ban in Indiana, it would be to the disadvantage of people with Down syndrome if abortion politics and the wider pro-choice v pro-life debate got in the way of the proposed law. It needs to be recognised that abortion politics deals with questions around the right to life. HB135 deals with disability rights. Whereas people will differ on the question of the right to life and abortion, it also needs to be acknowledged that targeted selective abortion not only impacts the unborn child and the parents, but it impacts on the survivors: those living with Down syndrome. It reinforces a cycle of prejudice against them, because it says: “your life is different and warrants detection for selective abortion” in a way that isn’t applied to those without the condition.

HB135 is the correct approach in terms of disability rights and is underpinned by the precedents of the United Nations (UN), the 2013 UK parliamentary inquiry on abortion and disability, and the current work of the Human Rights Commission in New Zealand.

Selective pregnancy terminations for Down syndrome remain stubbornly high. There is widespread evidence that doctors target Down syndrome in pregnancy and coerce women with otherwise wanted pregnancies towards abortion following a prenatal diagnosis. This is despite all of the excellent information about the good lives of people with Down syndrome that is available to doctors and expectant parents.

HB135 holds the doctor accountable if they perform a Down syndrome selective abortion. They can have their license revoked and and can be sued in a civil suit for damages. This is appropriate; it sends a clear and strong message to doctors that they will be held accountable for the unjust practice of prenatal selection. Equally, HB135 exempts from prosecution the mother, who rightly remains supported in her wanted pregnancy and is protected from prenatal abuse and discrimination.

But some in the Down syndrome community oppose these initiatives. The time has come for these “advocates” to decide who they are advocating for. Are they advocating for those with Down syndrome, or are they advocating for their own ideology? Let’s have a look.

Freelance Journalist David M. Perry is vocal in opposing bans for Down syndrome selective abortions. He complains that the Ohio Bill politicises his son as a wedge issue in this article at CNN. You may note that he actually is politicising the issue (his son has Down syndrome) in supporting legal abortion for Down syndrome and wedges his ideology into a discussion about disability rights. But, who is David M. Perry? It turns out that he is a pro-abortion activist blogging over at RH Reality Check. This is what he has to say about banning abortion for Down syndrome:

“Disability activists must make explicit their support for the right of women to choose to terminate a pregnancy based on a prenatal diagnosis of a genetic disability.”

That’s right. Perry is demanding that advocates for people with Down syndrome “must” explicitly support a right to abort for Down syndrome. He even thinks it can be the “right thing to do” when writing about abortion for Down syndrome:

“For some people, abortion may be the right decision.”

This is advocating a pro-choice ideology and wedging it into disability rights; it is not advocating for people with Down syndrome. Which he would know, if he asked them. You see, that’s the rub. Who’s missing from the discussion? Yes, the ones targeted for prenatal selection. We’ve actually discussed it with quite a few of them. We’re yet to meet any who think they deserve to be targeted for prenatal selection. They seem to be happy they were born and like living.

It seems paradoxical for some parents to be OK with society targeting their own children for prenatal selection. Perry doesn’t present one ethical argument in support of Down syndrome selective abortions in those otherwise wanted pregnancies, rather, he just complains about efforts to ban prenatal discrimination and defends his pro-abortion agenda. He’s not the only one.

Keri Wagner-Peck joined the drama and wrote an interesting blog the other day. Like me, she wonders about the voice of people with Down syndrome in this debate:

“To leave people with Down syndrome out of this conversation – however anyone of us stands on the issue – is promoting the worse kind of patronising thought. I have no idea how my son will think about abortion but I will be willing to listen and accept whatever he has to say.”

That’s a good start. “Nothing about us without us” is the disability mantra after all, although often overlooked. But, like Perry, Wagner-Peck opposes the Ohio Bill and firmly pegs herself in defending legal abortion due to prenatal diagnosis of Down syndrome:

“I do not support this kind of legislation – even though our son has Down syndrome. I am pro-choice which means I support whatever reasons a woman chooses for having an abortion.”

Whatever reason, yep, that includes Down syndrome. That’s patronising towards people with Down syndrome perhaps? –  She will listen to what her son says when he is older and will accept what he says, but she will defend the right to stop his type being born, whether her son agrees with her or not? It’s all very confusing.

And so it goes on. Mark Leach is another who has come out fighting against the Ohio pro Down syndrome bill. Leach is very active in blogging on prenatal testing. He seems to have now pinned his position on supporting selective abortions for Down syndrome being legal provided decisions are based on current up to date information. He wrote a long blog opposing HB135 with a far-fetched scenario about a drunk man raping his wife and forcing her to have an abortion following a prenatal diagnosis for Down syndrome just so he can sue a doctor for breaking the Ohio law. It reads more like a Hollywood soap opera than a serious piece of advocacy. Somehow this hypothetical scenario is an argument for continuing prenatal selection against those with Down syndrome. That’s not advocating for people with Down syndrome.

We challenge Leach to clearly state that it is unethical to target those with Down syndrome for selective abortion. That’s the pro-Down syndrome position, as a bio-ethicist we expect him to promote that position. As to his “pro-information” argument that he raises frequently, well, we would ask – do people with Down syndrome agree that being targeted for abortion is OK, provided one is informed in doing it? Do people with Down syndrome agree with Leach?

So, here’s our challenge to Perry, Wagner-Peck and Leach. Go and ask people with Down syndrome what they think about their lives and being targeted for abortion. Hear and respect the views of those with Down syndrome who say that their lives have worth. Hear them say, no, we don’t support targeted prenatal selection for being who we are. Go fight for them and support the Ohio Bill as an advocate for people with Down syndrome.

About Saving Down syndrome: We are an international social justice advocacy for people with Down syndrome, providing a balanced perspective on life with Down syndrome and supporting parents with a prenatal diagnosis. We raise awareness around the discriminatory and eugenic nature of the practice of antenatal screening worldwide and wish to ensure that prenatal screening exists only to provide unborn children with Down syndrome and their parents with life-affirming, unbiased care through advocacy, education, support and understanding–worldwide. We have representation in the US (including Ohio), Canada, Germany, France, Scotland, England, Wales and New Zealand.

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Myth 3. Genetic screening is not about money, but our well-being. https://www.savingdownsyndrome.org/myth-3-genetic-screening-is-not-about-money-but-our-well-being/ https://www.savingdownsyndrome.org/myth-3-genetic-screening-is-not-about-money-but-our-well-being/#respond Tue, 25 Aug 2015 08:00:44 +0000 https://www.savingdownsyndrome.org/?p=4416 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.

PictureMyth3

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.

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Myth 2: Screening and selection for Down syndrome is a woman’s right and a free choice https://www.savingdownsyndrome.org/myth-2-screening-and-selection-for-down-syndrome-is-a-womans-right-and-a-free-choice/ https://www.savingdownsyndrome.org/myth-2-screening-and-selection-for-down-syndrome-is-a-womans-right-and-a-free-choice/#respond Tue, 18 Aug 2015 20:19:58 +0000 https://www.savingdownsyndrome.org/?p=4412 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.

PictureMyth2

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.

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Myth 1. Down syndrome is a serious condition that causes suffering https://www.savingdownsyndrome.org/myth-1-down-syndrome-is-a-serious-condition-that-causes-suffering/ https://www.savingdownsyndrome.org/myth-1-down-syndrome-is-a-serious-condition-that-causes-suffering/#respond Tue, 11 Aug 2015 20:36:27 +0000 https://www.savingdownsyndrome.org/?p=4407  

 

 

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.

PictureMyth1

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.

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