Monica Rafie and Tracy Winsor

How can we stop more Down syndrome babies from being aborted?

Monica Rafie and Tracy Winsor
By Monica Rafie and Tracy Winsor

December 16, 2011 (HLIAmerica.org) - As word spread of a new non-invasive, highly accurate prenatal test for Down syndrome, MaterniT21, the headlines could hardly have been more sensationalistic: The End of Down Syndrome! Will We Cull Those with Down Syndrome? Are Kids with Down Syndrome on the Road to Extinction?

This mainstream response seems to suggest a terrible acknowledgment of what happens to babies diagnosed prenatally with Down syndrome. We have been “ending Down syndrome” for years, targeting atypical unborn children as we journey down a road that ensures a decreasing Down syndrome birth rate.

Just last week, a Time magazine article reported statistics pulled from a 2009 edition of the Archives of Disease in Childhood. As a result of more sophisticated prenatal screening, and with nine out of ten babies aborted following the prenatal diagnosis of Down syndrome, the birth rate for these children has been dropping for decades, decreasing by 15% between 1989 and 2005. This is particularly shocking as the impact of increasing maternal age during the same period should have resulted in a 24% increase in the Down syndrome birth rate.

What makes MaterniT21 (and all the new non-invasive prenatal tests based upon maternal plasma DNA) different and foreseeably catastrophic is that it will draw in a larger percentage of pregnant women. Those who reject invasive testing because of associated risks are likely to consent to a non-invasive test.  Advocates for those with Down syndrome have braced for just that reality, predicting that the Down syndrome birth rate (roughly 1 in 700 now) will drop sharply once non-invasive tests such as MaterniT21 are more widely available.

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With an abortion rate that has consistently been around 90%, shouldn’t we also be asking ourselves why our best efforts at advocacy for those prenatally diagnosed with Down syndrome have failed? And the related, and more important question, how can we improve our advocacy efforts?

Persons with Down syndrome and their families are blessed to have strong communities of support, both locally, and nationally, through such organizations as the National Down Syndrome Congress (NDSC), the National Down Syndrome Society (NDSS) and their local affiliates. These organizations have worked very hard for their constituents to gain access to education, employment, and healthcare opportunities as well as representation among those granted federal funds for medical research. They are to be commended for successful advocacy in these areas.

Over the years, NDSC and NDSS have offered multi-pronged, intelligent, and inspired efforts surrounding the issue of prenatal diagnosis. Both organizations have worked to improve the public profile of persons with Down syndrome using traditional and social media. They have addressed the discriminatory practice of targeted prenatal testing, produced positive, accurate, and updated information for parents experiencing a prenatal diagnosis of Down syndrome, disseminated materials aimed at improving the sensitivity and response of doctors, genetic counselors and other medical professionals. They have even organized local in-person outreach initiatives to offer peer support to parents at the time of diagnosis. None of these efforts, however, have been successful in bringing society at large to a fundamental shift, or tipping point, whereby babies diagnosed prenatally with Down syndrome are more likely to be carried to term and welcomed at birth by their parents.

The primary threat to the lives of persons with Down syndrome is no longer prenatal testing and diagnosis; nor is it ignorance, outdated information, lack of peer and professional support, nor even insensitive communication at the time of diagnosis. The primary threat to the lives of persons with Down syndrome is abortion. Yet, the major Down syndrome organizations are often unwilling to face that issue head on.

In 2008, NDSS and NDSC met with the American College of Obstetricians and Gynecologists, American College of Medical Genetics, and National Society of Genetic Counselors, and in 2009 released a jointly-written document titled, “Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives“. The document addresses a handful of “misconceptions” about the organizations and their practices. The collaborative statement acquitted medical professionals of any “eugenic” motives surrounding the use of prenatal screening and testing, and affirmed that genetic counselors do not engage in directive counseling. Of all the possible misconceptions to present, the single one brought forth by NDSC and NDSS is to dismiss any idea that they are “pro-life” organizations.

Dr. Brian Skotko, a Harvard educated Pediatric MD, Certified Geneticist, and specialist in Down Syndrome at Children’s Hospital Boston, Board Member of NDSS and NDSC, author of numerous articles and oft-cited research about families of persons with Down syndrome,  most recently wrote about the expected effect of non-invasive prenatal diagnosis in a USA Today column. With a statement that perfectly echoes the positions of the national Down syndrome organizations, Skotko clearly indicates that Down syndrome advocacy ends where expectant parents’ decision-making begins: “I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision.”

Skotko continues, “But the decision no longer needs to be made in a vacuum, nor should it be made with lingering misperceptions that are still whispered in our society.” With an abortion rate close to 25% for all babies nationwide, and in some areas, as high as 46%, perhaps it is worth considering that it may not be lingering misconceptions that dispose parents toward a decision to abort after diagnosis. Perhaps instead, the abortion rate for Down syndrome is the natural consequence of a diseased culture, influenced by 40 years of abortion on demand. Perhaps most abort simply because they can.

There is a dawning sense that the problem is much more complex than lingering misconceptions. Advocate, attorney, and father, Mark Leach, in The Prenatal Testing Sham, argues that Down syndrome advocacy focused on informing expectant parents with accurate and up-to-date resources about raising a child with Down syndrome is at this point the only card left to play: “Absent some fundamental societal change, these offsetting resources are really the only chance we have to turn the tide of decisions following a prenatal diagnosis.” Leach may be correct in his argument, but there is little evidence to support the hope that these resources will to any significant degree affect the numbers of parents who would otherwise abort.

Renate Lindeman, President of the Nova Scotia Down Syndrome Society, and mother of two children with Down syndrome, in anticipation of the imminent release of non-invasive prenatal tests, writes in the Canadian Medical Association Journal article, “Take Down Syndrome Out of the Abortion Debate”: “The best way to create a society that embraces (genetic and other) differences is to educate and engage the public and to support individual choices, whatever they are.” There has been no shortage of support for individual choices for 40 years. Why then are we still discussing “the best way to create a society that embraces difference”?

If the future plays out as has the past, advocacy for the child with Down syndrome in the womb will, in fact, be the only card left to play. What’s missing in the otherwise comprehensive approach of the NDSC and the NDSS is the simple and confident assertion that abortion is not an appropriate parental response to the prenatal diagnosis of Down syndrome. If the strongest, best advocacy refrains from articulating that even a fully-informed decision to abort a baby diagnosed with Down syndrome is a poor one, then who will make that argument?

If it is our goal to discover the best way to create a society that embraces (genetic and other) differences, can we even begin such an endeavor when we accept the idea that the unborn baby is so other, so different from us that they are not worthy of protection? Authentic and effective Down syndrome advocacy must begin by embracing and advocating specifically for the baby with Down syndrome in the womb. Until the Down syndrome advocacy organizations recognize this truth, the recurring headlines will continue to read, “The End of Down Syndrome!”

A blueprint for better disability advocacy can be discovered in the Pastoral Statement of U.S. Catholic Bishops on People with Disabilities. Its vision is rooted in justice and is hopeful that change can be acheived,  with no hint of resignation to the failure of individuals or the challenge of “contemporary circumstances”:

We look to the future with what we feel is a realistic optimism. The Church has a tradition of ministry to people with disabilities, and this tradition will fuel the stronger, more broadly based efforts called for by contemporary circumstances. We also have faith that our quest for justice, increasingly enlisted on the side of individuals with disabilities, will work powerfully in their behalf. No one would deny that every man, woman and child has the right to develop his or her potential to the fullest. With God’s help and our own determination, the day will come when that right is realized in the lives of all people with disabilities.

Monica Rafie and Tracy Winsor are founding partners in the work of Be Not Afraid Ministry, an outreach to parents grappling with prenatal diagnosis. Monica and Tracy are Contributing Writers for HLI America, an educational initiative of Human Life International. Their recent articles may be found at HLI America’s Truth and Charity Forum. This article first appeared at HLIAmerica.org

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Lisa Bourne

Parents say they’re now calling four-year-old son a girl

Lisa Bourne
By Lisa Bourne

OAKLAND, CA, July 7, 2015 (LifeSiteNews) -- An Oakland, California, couple is giving their four-year old son the green light to identify as a girl.

Jack Carter Christian, the son of Mary Carter and James Christian, will now be known as “Jackie” and be allowed to dress and act as a little girl.

The family acknowledged they were already letting the boy wear his older sister’s dresses on a regular basis and also that he liked to wear pink boots. James Christian said he thought for a long time that it was a phase his son would get over.

Carter detailed in an NPR interview the conversation with her son that led to the decision to allow him to live as a girl.

“Jackie just looked really, really sad; sadder than a 3-and-a-half-year-old should look,” Carter said. “This weight that looked like it weighed more than she did, something she had to say and I didn’t know what that was.”

“So I asked. I said, ‘Jackie, are you sad that you’re not going to school today?’ And Jackie was really quiet and put her head down and said ‘No, I’m sad because I’m a boy.’”

Carter continued speaking about the details of the day she encouraged her son to act upon the emotion he’d expressed.

 “You’re really not happy being a boy?” Carter queried her son.

“I thought a little bit longer and I said, ‘Well, are you happy being you?’” said Carter. “And that made Jackie smile. And I felt like for that moment that was all that really mattered. That was ‘The Day. ”

It was then that Carter proceeded to a Walgreen’s drug store and purchase elastic hair bands picked out by her son to pull his hair into little ponytails, something that offered apparent satisfaction for mother and son.

“There she was, in these cast-off Little Mermaid pajamas and five pony tails that are sticking out of her head kind, of like twigs, and this smile on her face and I’ve never seen such a happy child,” Carter stated. “To go from maybe an hour before this, this child who looks so sad, to that- pure joy, just pure joy, right there.”

Carter and Christian are one of a number of couples turning up in media stories saying that their young children will no longer live life as their biological gender. The confusion they describe is a disorder classified by the American Psychological Association as gender dysphoria.

San Diego parents Jeff and Hillary Whittington appeared in late May with their six-year old daughter Ryland, who is identifying as a boy, at the 6th annual Harvey Milk Diversity Breakfast. Milk, the first openly homosexual candidate elected to office in San Francisco as City Commissioner, was also notorious for preying sexually upon underage, drug-addicted, runaway boys, and was murdered by a political rival in 1978.

Massachusetts couple Mimi and Joe Lemay have also decided to allow their five-year-old daughter Mia, now going by Jacob, to live as a transgender child, turning to NBC News with the specifics.

They said an April DailyMail.com report that it was “his” choice to become transgender, and also that they shared their story hoping to prove there is no such thing as “being too young” to identify as transgender.

“I realized he had never really been Mia,” Mimi Whittington said. “That had been a figment of my imagination.”

Author and public speaker Walt Heyer, who underwent sex reassignment surgery to become a woman and then later returned to living as a man, told the Daily Caller children cannot be born as one gender and identify as another by accident. He now performs outreach to those experiencing gender confusion.

“There’s a lot of questions here. Kids are not born transgender,” Heyer said. “Childhood developmental disorder that comes out of some event or series of events or abuse or neglect or trauma or overbearing mother or father or someone or a lot of times its sexual abuse.”

Heyer said the experience of having parents or caretakers entertain the idea of gender confusion is at issue and this is what happened to him.

“My grandmother kept cross-dressing me and loving on me as a girl and not as the boy God made,” he said.

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Lisa Bourne

Utah man faked anti-gay ‘hate crimes’

Lisa Bourne
By Lisa Bourne

July 7, 2015 (LifeSiteNews) – A Utah man who faked a series of anti-gay “hate crimes” may face charges after his actions were debunked by rural authorities.

Rick Jones said someone beat him, leaving facial and head bruising, and carved a homosexual slur in his arm, part of a series of staged attacks that spanned from April to June.

Jones, 21, told a local TV news station in June he believed he was being targeted because he was homosexual.

Jones is also implicated in spray-painting a slur on his family’s home, throwing a rock and a Molotov cocktail through his home’s window, spray-painting the family pizza business, and also breaking in and stealing $1,000 from the business.

The Millard County Sheriff’s office found discrepancies with evidence in the case and Jones ultimately admitted to perpetrating the harassment himself.

Jones could face charges of filing a false report and reckless burning.

His lawyer said the incidents were a cry for help geared toward the people close to Jones, and that Jones didn’t realize how much attention they would get.

Attorney Brett Tolman said that Jones has since begun treatment for mental health.

Tolman said his client did not have any criminal intent and praised the community’s response to the fake accusations, saying that the outpouring of support after the hate crime claims became public still was a good message.

Utah Lt. Gov. Spencer Cox was one who had publicly declared his support after the false accusations surfaced. Cox said Tuesday he’s relieved the allegations weren’t true, and expressed concern for Jones and his family.

Tolman also used the faked crimes as evidence that gays face discrimination.

“I think it’s such good evidence of the difficulties members of the gay community deal with,” said Tolman, “and some make better choices than others.”

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U.S. senator: Individuals don’t have religious freedom, just churches

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By Ben Johnson

WASHINGTON, D.C., July 7, 2015 (LifeSiteNews) – The freedom of religion guaranteed by the First Amendment applies only to churches, not to individuals, a U.S. senator said on national television recently.

Sen. Tammy Baldwin, D-WI – the nation's first openly lesbian elected to the U.S. Senate – addressed the Supreme Court's Obergefell v. Hodges decision on June 27 on MSNBC's Up with Steve Kornacki.

"Should the bakery have to bake the cake for the gay couple getting married?” the host asked. “Where do you come down on that?"

Baldwin responded that the First Amendment gave Americans no right to exercise religion outside the sanctuary of their church, synagogue, or mosque.

“Certainly the First Amendment says that in institutions of faith that there is absolute power to, you know, to observe deeply held religious beliefs. But I don’t think it extends far beyond that,” she said.

Sen. Baldwin then likened the issue to the Obama administration's contentious HHS mandate, requiring employers to furnish contraceptives, sterilization, and abortion-inducing drugs to female employees with no co-pay.

“We’ve certainly seen the set of arguments play out in issues such as access to contraception,” Baldwin said. “Should it be the individual pharmacist whose religious beliefs guides whether a prescription is filled, or in this context, they’re talking about expanding this far beyond our churches and synagogues to businesses and individuals across this country.”

“I think there are clear limits that have been set in other contexts, and we ought to abide by those in this new context across America.”

That view contrasts with a broad and deep body of law saying that individuals have the right to exercise their religion freely under the First Amendment, not merely to hold or teach their beliefs.

“At the Founding, as today, 'exercise' connoted action, not just internal belief,” wrote Thomas C. Berg, the James L. Oberstar Professor of Law and Public Policy at the University of St. Thomas School of Law.

That body of cases shows the First Amendment is an individual, not merely a corporate, right.

Further, the extent – and the constitutionality – of the HHS mandate is far from settled.

The Becket Fund for Religious Liberty has won 28 injunctions against the ObamaCare regulation and lost six.

The most significant statement to date has been the U.S. Supreme Court's Hobby Lobby decision last June, when the justices ruled 5-4 that closely held corporations do, indeed, exercise conscience protections under the terms of the Religious Freedom Restoration Act.

"We reject HHS's arguments that the owners of the companies forfeited all RFRA protection when they decided to organize their businesses as corporations rather than sole proprietorships or general partnerships," they added. "The plain terms of RFRA make it perfectly clear that Congress did not discriminate in this way against men and women who wish to run their business as for-profit corporations in the manner required by their religious beliefs."

However, the justices did not invoke the First Amendment's guarantee to freedom of religion – the “first freedom” that many say has been increasingly constricted under the Obama administration. The president rhetorically has spoken only of the “freedom of worship,” while conservatives say the “free exercise” clause grants Americans the right to practice their religion inside or outside church, in any relevant aspect of their lives, subject only to the most extreme provisions.

The RFRA holds that the government may not substantially burden any religious belief without having a compelling governmental interest.

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