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Yes, Down Syndrome Is A Life Worth Living, And A Life Worth Saving


When Jessica Capitani’s son was born, she remembers doctors, nurses and specialists continuing to ask her about her baby — but not in a congratulatory way. Instead, it was, “Didn’t you have the test?” The insinuation was that her son should not be here, that he should have been weeded out through abortion, because he has Down syndrome.

The default position for many in the medical community is that a prenatal diagnosis for Down syndrome is grounds for abortion. The numbers back up this claim and they’re staggering. Statistics show at least two-thirds of babies diagnosed with Down syndrome are aborted in the United States. That number is 90 percent in the United Kingdom and 100 percent in Iceland.

Prenatal screening for Down syndrome is about to skyrocket. In 2011, a new screening test was introduced, known as noninvasive prenatal testing, that is a simple blood test to indicate if the unborn child may have Down syndrome or other chromosomal markers. Estimates show the market for this new testing is going to quadruple in the next five years.

What’s more alarming is that the primary purpose of these tests is to provide the option of abortion. Ruth Marcus put it bluntly in The Washington Post: “More than two-thirds of American women choose abortion in such circumstances. Isn’t that the point — or at least inherent in the point — of prenatal testing in the first place?”

While information is generally valuable to help preparation, parents often find the test results are used to give some in the medical community a chance to coerce them into aborting a child with Down syndrome. And the statistics show that pressure is working.

As one Icelandic geneticist observed about his country’s 100 percent “eradication” of Down syndrome through abortion, “I don’t think that heavy-handed genetic counseling is desirable … You’re having impact on decisions that are not medical, in a way.”

Many people know someone with Down syndrome. Headlines and news stories highlight the accomplishments of individuals with Down syndrome. Just Google “Down syndrome” and scroll through the news to find incredible stories: “Cubs fan with Down syndrome will sing national anthem.” “Senior with Down syndrome holds fundraiser for Eagle Scout project.” “Alabama cheerleader with Down syndrome to star in national video.” Those are just to name a few.

Sixty years ago, those types of headlines didn’t exist. At that time, there was no place for people with Down syndrome in society. Their life expectancy was short and there was a lack of community support available. Today, thanks to many early intervention programs and educational and legal supports, people with Down syndrome are welcomed into the classroom, and many are living full, active lives and engaged in their community.

But this progress is exactly why something must be done to address their prenatal targeting for termination. Karen Gaffney, a disability rights advocate who holds an honorary doctorate and has Down syndrome herself, is traveling the world with this warning. “We face the possibility of wiping out all the tremendous progress we have made in the last 60 years.”

Several U.S. states are trying to do something about this by passing laws to ban abortions that are solely based on a Down syndrome diagnosis. North Dakota and Louisiana have such laws on the books.

Ohio and Indiana would have this law in place had it not been for abortion-on-demand advocates challenging them in court. NARAL Pro-Choice Ohio says that women who want to abort because the baby was diagnosed with Down syndrome should have “the unfettered right to choose whether to end a pregnancy before the point of viability.”

This “unfettered right to choose” argument is simply not in accordance with reality. Every regulation on abortion prior to “viability” does not suddenly become void for “fettering” some “unfetter-able” super right. To the contrary, a state saying Down syndrome should not be the sole reason for an abortion would not burden any legal reason for abortion, even of a child with Down syndrome. But it would prevent the discriminatory targeting of children because they have Down syndrome, preventing the incredibly shocking and all-too-common practice where those in the medical community coerce women to abort a child after being diagnosed with this disability.

Take a state like Pennsylvania, whose legislature is right now considering a law that would prohibit abortions solely based on a Down syndrome diagnosis. As Senate President Pro Tempore Joe Scarnati said, “Those with Down syndrome, those lives need to be celebrated.” Pennsylvania is also one of eight states that bans abortions on the basis of the sex of the baby.

Thirty years ago, Pennsylvania chose to protect unborn children against sex-selective abortions. Why should protecting babies targeted for potential disabilities, particularly Down syndrome, be any different?

“The stakes of this debate are clear,” writes Ruth Graham in Slate. “It’s a conversation not just about prenatal testing but about personhood, about whether Down syndrome should be considered a condition or a disease.”

Jessica Capitani, pro-choice on abortion at the time she was pregnant with her son, had this conversation with herself when she received her prenatal diagnosis and recognized the conflicting world views. “It became difficult to assert the absolute worth of that life, while simultaneously conceding that prospective parents should decide if that life was worthy enough to be their child. The hypocrisy became too great to defend. Either Down syndrome is a life worth living or it isn’t.”

“I am not proud to admit that I struggled initially with the prenatal diagnosis but I’m blessed to be where I am today,” concludes Capitani. “I am a better mother, wife and person because of my son.”

Passing a law that bans abortions on the basis of a Down syndrome diagnosis sends a warning to the medical community against pressuring parents towards abortion. These laws say to a society that values tolerance that these same principles should apply to the Down syndrome community, even while they are in the womb, and says their lives are valuable and worth living. We’d be a better society because of it.