International Down Syndrome Coalition for Life: Common Ground and REAL Choice

June 28, 2012 · 8 comments

in The Boy & Down Syndrome

Picture for a moment a young, unwed woman from a poor family who finds out she is pregnant.

Her resources are limited, and the father of her baby has abandoned her. She has the support of her family and friends, but they are also poor. Despite the difficulties she knows she will face, this young woman is excited about her baby. She’s excited about becoming a mother, even though she knows it will be a difficult road.

Imagine that our young woman’s family and friends have encouraged her to get prenatal care. She finds a doctor who accepts Medicaid, which she now qualifies for because of her pregnancy and income level. She shows up for an early second trimester appointment with a male physician (who isn’t poor – remember that he’s a doctor), sees her baby on the ultrasound machine, and then the doctor, noting her young appearance and her Medicaid coverage, says to her:

“When do you want to schedule a termination?”

I believe that most people would be enraged that a doctor would presume to know what this young woman would choose – particularly a male doctor who has never given birth to a child and who has no personal knowledge of the support system she has. While we may have deep reservations about her ability to care for her child, we recognize that it’s still her choice to make. But scenarios like this one occur as a matter of routine when the issue at stake is Down syndrome, rather than poverty.

Doctors with no experience raising a child with Down syndrome have become gatekeepers for which children will be allowed to live.

Much of the information that these doctors provide to parents is outdated or misleading, and rarely are parents encouraged to talk with other parents who actually have children with Down syndrome.

Some women walk into their doctor’s office and boldly state that if their baby is diagnosed with Down syndrome, they intend to abort, just as many poor young women walk into abortion clinics and announce their intention to abort. Since the landmark decision of Roe v. Wade, our laws have afforded women that right.

But many women walk into their doctor’s offices excited about the child they are carrying.

Perhaps they are naive to the possibility that their child could be born with an extra chromosome, but many young women are also oblivious to the difficulties of living life as a single mom. Infinite wisdom and foresight are not requirements for childbirth – if they were, none of us would have been born.

The International Down Syndrome Coalition for Life (IDSC for Life), despite its pro-life sounding name and its tagline, “All Life is Precious” is not an anti-choice organization – they are a pro-Down syndrome organization. On the website, the Coalition describes the meaning behind the name as follows:

Why is our name IDSC for Life? INTERNATIONAL: Because we have members from all around the world. DOWN SYNDROME: Because we love someone who has Down syndrome. COALITION: Because we are a group that stands together loving them. FOR LIFE: Because we want their lives to be treated with dignity and respect from the moment their diagnosis is known, and through out their lives. This includes respecting their mother too. Pressuring a mother to end the life of her child, because the baby has Down syndrome, is not showing respect. Not for the mother, not for the child.

The Coalition also makes it clear through the mission statement what the focus is – people with Down syndrome and their families:

IDSC for Life is dedicated to serving individuals with Down syndrome from conception throughout their lives. We will achieve this by supporting families who have been given a prenatal diagnosis of Down syndrome. We direct families to accurate and up-to-date information about Down syndrome. We extend our heartfelt compassion, and hope and healing to parents who who were pressured to terminate, and ended their pregnancy because of a Down syndrome diagnosis and later regret that decision.

The IDSC does not attach itself to any specific religion or political party.

We have members are who are pro life, pro choice, and those who are neutral on the subject of abortion.

The IDSC for Life attempts to balance the overwhelming negativity with positive information from real people in the Down syndrome community.

The captioned photo of Nathan that went viral this week on Facebook attracted many positive comments. Unfortunately, some people saw the image as a political statement against choice. One commenter, after Mothering Magazine shared the image on their page, stated, “Mothering Magazine, I support a woman’s right to choose and so should you.” This commenter either missed the point entirely, or jumped to an unnecessary conclusion based on her support of abortion rights.

The image wasn’t a statement about abortion at all – it was a statement about how Nathan is much more than his diagnosis.

Another commenter’s critique of IDSC for Life was that they don’t provide enough information about the serious aspects of Down syndrome. To that I would respond, why should they? Negative information about Down syndrome is in abundant supply. IDSC for Life’s purpose is to counterbalance the negative with the positive.

I am blessed to have a complex tapestry of friends all over the country who stand on both ends of (and at every point in between) the political spectrum, and for that I am thankful, because I don’t live in an echo chamber. My friends, no matter how much I may disagree with them, are my friends FIRST, making it much harder to view them as The Enemy. I’ve never been prouder to have these polar-opposite-of-me friends than I have been these past few days, because many of my (vehemently!) pro-choice friends have shared Nathan’s captioned photo with their friends. Why?

Because they know that a choice made under duress with inaccurate or misleading information is no choice at all.

I may passionately disagree with the pro-choice camp on whether abortion is right, but by working together from this common ground, we can spare women the trauma of being pressured to abort, save the lives of babies with Down syndrome, and comfort heartbroken women who feel they made the wrong choice about her child with Down syndrome.

People are more important than an ideology. By loving people first, we can accomplish so much.

Isn’t it worth reaching across the aisle?

Further Reading on the IDSC for Life:

Beyond Labels
To Test or Not to Test
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k June 28, 2012 at 11:11 am

This:
“Because they know that a choice made under duress with inaccurate or misleading information is no choice at all.”

I am not making a statement here on my stance on abortion, because I feel like it’s complicated and I have gotten into the details before, but ANYONE who is pro-choice should be able to get behind this statement. Period. This is all of it in a nutshell.

Jane June 29, 2012 at 2:03 am

I shared Nathan’s gorgeous pic when it showed up on my FB page. I am pro-choice but have never been able to get my head around the idea that someone would abort a ‘wanted’ child just because of a diagnosis of some perceived ‘imperfection’. Would these same people place their child for adoption/ into fostercare when s/he turns out to have autism/ falls off her bike and sustains a head injury/ develops a mental illness etc, etc. Parenting doesn’t come with a guarantee! I’m so gald you have used your wonderful photo of Nathan in this way.

Andi June 30, 2012 at 10:44 am

Although there are some people who undoubtedly abort a child with a disability because they truly don’t want an “imperfect” child, my gut tells me that in most cases it’s less about the perfection angle and more about the pressure. The constant refrain that we hear in our society is that people with disabilities are “a burden to society” and that they have “no quality of life.” Women whose babies are diagnosed prenatally are often told that the “responsible” thing to do is to abort. Most of us want to be good citizens, and when women are told – by experts! – that their child will suffer horribly and will be a burden to their families and to society, they believe it, and they terminate.

The most dangerous of these three messages to me is the one about quality of life. It’s a direct appeal to a mother’s instinct to prevent her child’s suffering. Who among us wants to see our child suffer? So women trust that their doctors know what they’re talking about, and they act to prevent the suffering they’ve been told is unavoidable.

To add insult to injury, many people who’ve never had the experience of knowing or caring for a person with a disability are fearful when they receive the diagnosis. They fear they can’t handle the challenge, and that fear makes them vulnerable to the messages encouraging them to abort.

Thank you for commenting, Jane, in a thoughtful and caring manner. You and k have helped prove my point about common ground.

Pam July 15, 2012 at 7:38 pm

Andi, I admire you and others who work to educate and advocate for parents of children with Down Syndrome.
On August 19, 1955 my brother was born with Down Syndrome. The Doctor immediately told them he would not live to be a year old and they should put him in an institution and let him die. My parents refused to give up on my brother. They were told he would be a vegetable unable to sit, stand, walk, feed himself or potty train. He did all those things and more. He had health issues because of the Down Syndrome. They worked with him and encouraged him and most of all loved him. They worked with parents of other developmentally disabled children to educate the children (there were no special education classes). They met in church basements.
I feel privileged to have grown up with him. He taught me so much and I loved him with all my heart.
Things have improved a lot since then but many people are still ignorant about how much these children can contribute to society if given the chance.
My brother ended up living to be a 40 year old man. I miss him.
I hope more people will support you with IDSC for life.

Jennifer Thurman July 15, 2012 at 9:06 pm

I agree with Jane…in our culture, many people want a gaurantee in life for everything. doctors dont have a crystal ball. No one will know the fate the lies ahead for any child when they are born. DS or not. People think they can can control their lives but they can’t. I chose to have my child when they told me he was going to have Down Syndrome. I know everything happens for a reason.

Jackie July 15, 2012 at 9:08 pm

I think part of what makes women hesitant to carry a baby to term who they know has Down syndrome is fear of the unknown. Sometimes all it takes is ONE positive personal encounter with a child with Ds and their perspective can change substantially. I have purposefully sought out several women and introduced them to my daughter, Jayda, for this very reason. When they see with their own eyes that she is happy, healthy, intelligent, and capable, it puts them at ease. instead of worrying about what their unborn child may NEVER be able to do, they can see the possibilities of what their unborn child CAN do! The families that are lucky enough to be blessed with one of these angels on earth immediately become a part of one of the strongest networks that exist in my opinion. We all help each other, learn from each other, celebrate the little things (what a blessing it is to do this!), and learn a little sooner how to enjoy life like we should be. I am super proud to be a part of that community and wouldn’t change it for ANYTHING!

Kelly July 15, 2012 at 11:39 pm

I went through amino with both of my children because I was “advanced maternal age.” but I knew that regardless of the result, the baby would live inside of me or on the outside of me as long as God intended. I only wanted to be prepared to give the child the greatest chance at life possible. My job, was not to stand in the way of a blessing, but rather love, Protect, support and nurture the life inside of me.

Life is life, who are we to determine otherwise? I find it interesting when I have found a fertilized egg when I go to crack it open for an omlette and anyone near screams how gross that is…I ask “why?” and they say “because it is a baby bird! You can’t eat that!” of course I wouldn’t but they just made my point for me, if that is a baby bird…and it has yet to take a breath, and in fact is dead, then how on earth is a baby inside of a woman any different?!? I look at my children every day and shake my head thinking there are millions of lives destroyed every year because of abortion…if only they could meet their CHILD, then it would be harder to terminate the life inside of them, I can’t imagine voluntarily ending the life of my child, regardless of their diagnosis…they are my babies…my children…my gifts. If they do not want the child, there are many who would be old adopt. But giving life to another human being….that is the greatest thing imaginable!

Rachel Morrow July 22, 2012 at 2:03 pm

I forwarded Nathan’s picture this week on FB and today I find his mother’s blog! Technology never ceases to amaze and scare me. The most recent statistic I’ve heard thrown around is a 90% abortion rate for children with DS. Because of the reasons mentioned above, this is a tragedy. I, personally, am pro-life and feel it is a belief that reaches far beyond politics. Using choice in regard to terminating pregnancies as a platform for women’s rights and women’s healthcare is fraught with hypocrisy. A nation that does not protect its most vulnerable citizens is nation in decline (my version of a quote borrowed from Mother Theresa). I am so glad to learn today that there is an organization fighting to reverse the trend of killing babies because they happen to be diagnosed with down syndrome. Thanks for sharing more about this organization and the work you do to spread all that is positive and challenging about parenting children who happen to have a diagnosis that the world views as “disabling.”
Rachel

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