"I've Got Down Syndrome. So What?"
President of Jérôme Lejeune Foundation USA on Changing Mentalities and Recognizing Unique Gifts
New York City, (ZENIT.org) Kathleen Naab | 2753 hits
Today's World Down Syndrome Day is now in its second year of recognition by the United Nations.
A statement on the Day from UN Secretary-General Ban Ki-moon affirms that discrimination against people with Down syndrome, while it exists on many levels, hurts "not only individuals who are directly affected, but whole societies."
The Jérôme Lejeune Foundation, named after the doctor who discovered the cause of Down syndrome, exists to change the trend of discrimination and advocate for the rights of those with Down syndrome, especially -- and fundamentally -- their right to be born.
Mark Bradford, the president of the US branch of the Jérôme Lejeune Foundation, is at the United Nations offices in New York today, but he granted this email interview to ZENIT.
ZENIT: What is the Jérôme Lejeune Foundation?
Bradford: When Jérôme Lejeune discovered in 1958 that the cause of Down syndrome was an extra copy of chromosome 21, he realized he had identified two targets: one was a therapeutic target that would allow researchers to investigate treatments to improve the lives of individuals with Down syndrome. But he also realized he had identified a target for prenatal diagnosis, which would likely result in the abortion of babies with this genetic intellectual disability. He was right on both counts. Unfortunately, the abortion rate for prenatally diagnosed pregnancies with Down syndrome in France has grown to 96% and in the US it is somewhere upward of 90%.
Knowledge of this reality caused Jérôme Lejeune to commit his life to research, care, and advocacy for individuals with Down syndrome and other genetic intellectual disabilities. When he died in 1994 with his work unfinished, he expressed his desire to his family that in some way his work might be continued on behalf of his little patients. The Lejeune family and friends then started the Jérôme Lejeune Foundation in Paris in 1996 with the same mission that drove the life of Dr. Lejeune, that is, research into therapeutic treatments to improve lives, care for their medical needs, and advocacy for their rights in society, most especially their fundamental right to life.
The foundation is now the largest private funder of research in the world, having committed over $25 million to research since its beginning. In 2011 the Jérôme Lejeune Foundation USA was launched to bring the international work of the Foundation to the US.
ZENIT: Isn't it a bit ironic that the United Nations has a World Down Syndrome Day, given its record on abortion. How does a paradox like this occur?
Bradford: The UN Convention on the Rights of Persons with Disabilities was ratified in 2008. While it certainly has its weaknesses, in general it is a document intended to "promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity." Article 10 of the document says: "States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others."
At the same time, however, it ensures protection of "sexual and reproductive health," which some countries have clarified as not supporting, in their context, a right to abortion. Certainly, when considered in the context of other initiatives of the UN this would present a paradox.
ZENIT: Here in the States, North Dakota looks set to become the first state to ban abortions because of "genetic abnormalities" such as Down syndrome. Does a victory in ND signal a change in mentality, even though as many as 9 out of 10 people with Down syndrome are still aborted in this country?
Bradford: It will be interesting to see if the North Dakota legislation stands. I think it is similar to the recent Arkansas legislation prohibiting most abortions after 12 weeks. They both, in similar ways, are indirect challenges to the 1973 Roe vs. Wade decision. Abortion advocates are not going to let this remain unchallenged. There are some very vocal advocates, however, in the Unites States working both in opposition to abortion and for the rights of the disabled. I think the advent of new non-invasive prenatal testing which can identify trisomy 21, 18, and 13 as early as 9 or 10 weeks in high risk pregnancies has been a wake up call to us all that there is a real effort to prenatally identify developing babies with Down syndrome so that the decision to abort is an "easier" one for many women. There has been a strong eugenic current in the West for the past several years and tests like this, whose only purpose is to prenatally identify a genetic condition for which there is as yet no known therapeutic intervention, is evidence that those who value human life in all it's beautiful diversity need to work harder and faster to protect it.
ZENIT: In stark contrast to North Dakota, we have a country like Denmark aiming to be "Down Syndrome free" by 2030. What else needs to be done to change mentalities, here and abroad?
Bradford: World Down Syndrome Day is one of those efforts at changing mentalities around the topic of disability. Our campaign, "Down Syndrome – So What!" is another. People need to be constantly challenged to see that individuals with disabilities bring unique gifts to the human family. The notion that these individuals present a burden to society is reflective of an attitude of impatience, fear, and prejudice. Those are not reflective of our highest human potential, and are actually the opposite of those very human traits individuals with Down syndrome are most known for, that is, their love, compassion, generosity, openness, helpfulness, intuitiveness and creativity. It is the task of advocates for the disabled to make those qualities known and to put them to work in the public square.
ZENIT: Today's campaign is called "Down Syndrome – So What!" What's the message?
Bradford: It is just that. It is an effort to help people understand the humanity of those with Down syndrome. They are people with all the same emotions and sensitivities the rest of us have. They just need to be accepted for who they are and to be helped to reach their potential through interventional therapies, opportunity, and even therapeutic research leading to treatments that will improve their lives in those areas most affected by their disability, that is, cognition, memory, and speech.