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On World Down Syndrome Day: Advocacy Associations Uniting

Petition presented to UN today

The discrimination against persons with Down syndrome (DS) begins before they are born and is occurring earlier in pregnancy with Non invasive prenatal testing (NIPT) which can identify Down syndrome in an unborn child as early as the seventh week of pregnancy by testing the mother’s blood.

Today, World Down Syndrome Day, seeks to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. Also highlighted is a global initiative–Stop Discriminating Down–which unites advocacy associations and family groups from around the world in denouncing the discrimination of children through a petition that will be delivered to the United Nations today on their behalf. The petition exhorts the UN Secretary General, the High Commissioner of Human Rights, and others to urge governments to protect unborn babies with Down syndrome from discrimination. Specifically, the petition calls for the UN to recommend that Member States:

  • Stop systematic prenatal screening programs that target Down syndrome and deliberately encourage abortion as part of public health programs.
  • Regulate the introduction of prenatal genetic testing, based on the principles defined in the Universal Declaration of Human Rights, in the Oviedo Convention (articles 11 and 12) and in the EU charter of Fundamental Rights (articles 2, 3, 21 and 26), the UN Convention on the Rights of Persons With Disabilities (articles 5, 10, 14, 15, 23, 25).
  • Allow the use of genetic testing solely to enhance human care and well-being, and not to discriminate against people on the basis of their genetic predisposition.
Sign the petition here.
Following a prenatal diagnosis, the rate of abortion for babies with Down syndrome has risen steadily. In some cases it has become the rule, not an exception. Reports put the rate of abortion for babies with DS as high as 90-92% in some European countries. Denmark recently reported a staggering abortion rate of 98%, and estimates that “the disorder could be a thing of the past in 30 years”; solely because individuals with DS will be aborted out of existence.

In the US, it is estimated that abortion has reduced the Down syndrome population by 30%. Regardless of the numbers, the abortion of any baby with DS is too many. Mark Bradford, president of the Jermone Legeune Foundation USA states, “To paraphrase the recently deceased disabilities rights activist, Dr. Adrienne Asch, the only thing prenatal diagnosis can provide is a first impression of who a child will be. Making such a radical decision as to end the life of a child based upon a first impression is a most horrible and violent form of discrimination.” 
A new video with actress Olivia Wilde- HOW DO YOU SEE ME?– was produced to challenge the way people perceive those with DS and encourage them to see the whole person, not just the perceived disability. The video shows the actress while Anna Rose Rubright, a 19-year-old New Jersey college student and Special Olympics athlete, talks about her dreams and aspirations. The compelling video ends with Anna appearing onscreen asking “How do you see me?”
Parents and families of children with DS are speaking out today in an effort to dispel the ignorance that surrounds individuals with DS. One moving account by a father in Scotland is particularly effective. In “Who wants to live in a world without Rosies?“Jamie McCallum writes:

We don’t worry any more about Rosie’s capabilities, or the likelihood that she can have a happy, fulfilled life. Rather what concerns us is the ignorance she will face; the judgement and limitations imposed on her from the wider world who don’t understand her capabilities. And more widely we worry about how those societal attitudes taint the decisions of new parents faced with a Down’s Syndrome diagnosis, causing an inability to consider their choices based on information that accurately reflects the present situation and ignores the past. 
 
“So, you see, this last year our perspective has changed. It’s no longer Rosie we’re worried about. It’s you.” 
State legislators in the US are beginning to take action to counter the ignorance and discrimination in order to protect unborn babies diagnosed with DS. In 2013, North Dakota became the first state to ban abortions based on a Down syndrome diagnosis. This month Indiana became the 2nd state to do so with House Bill 1337, which passed by a vote of 60-40, to ban abortions for genetic conditions such as Down syndrome, the baby’s race or sex, and holds doctors liable for wrongful death if they knowingly perform an abortion for these discriminatory reasons. “Those unborn children are Hoosiers and they have constitutional rights,” said House Speaker Brian Bosma. “We’re not making a determination about women’s health. We are trying to protect the right of the unborn; they cannot speak for themselves.”
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This report provided by the Parliamentary Network for Critical Issues.

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