No lie can live forever

James & Juliet crossing the Edmund Pettus Bridge, Selma, Alabama, January 20, 2019

Dr. Martin Luther King, Jr. declared that “no lie can live forever.” I pray this is true for what some believe about Down syndrome.

This past Martin Luther King, Jr. weekend, my kids and I made a tour of significant sites in the Civil Rights Movement. Our final stop was in Selma, Alabama.

On March 7, 1965, 600 marchers led by John Lewis and Hosea Williams crossed the Edmund Pettus Bridge in Selma on their way to the state capital in Montgomery. They marched to protest the Jim Crow laws that prevented blacks from being registered to vote. Once on the other side of the Alabama River, state troopers set upon them, driving them back with nightsticks, tear gas, and shots fired overhead. It became known as Bloody Sunday.

Two days later, Dr. King joined 2,000 marchers in another attempt. However, a federal judge had instituted an injunction prohibiting the march. Rather than take a beating under the guise of enforcing a court order, the marchers halted at the site of Bloody Sunday, knelt in prayer, and turned around.

Finally, on March 21, 1965, the injunction was lifted. President Lyndon Johnson federalized the Alabama National Guard to protect the now 4,000 marchers that set off from Selma along U.S. 80, the Jefferson Davis Highway. Upon reaching Lowndes County line, the march was required to reduce down to 300 marchers due to the road narrowing to two lanes. But, when the march approached Montgomery, the crowd swelled to 25,000.

Below, you can watch Dr. King’s remarks to the crowd upon reaching the state capital to demand equal voting rights. It is only two minutes long and it gave me chills listening to it:

Dr. King asks and answers the question of “How long” must they be oppressed? Not long, he says. Why? Because no lie can live forever.

Throughout our trip, I thought about what are the civil rights injustices occurring today. I expect readers will have an immediate word association with the news of our time: immigration, LGTBQ and transgender, police brutality and mass incarceration. But, given the focus of this blog, not surprisingly, I thought of the continued, systematic discrimination against those with Down syndrome, specifically as it informs prenatal care policy decisions.

And, this made me think about what lies are told about Down syndrome.

Current practice guidelines mandate that all women are to be offered prenatal genetic testing for Down syndrome. There are some truths to support this practice: the technology exists and some women want that information prenatally. However, those same practice guidelines require that the obstetrician counsel his or her patient about terminating the pregnancy following a prenatal diagnosis of Down syndrome. Why? Because of the lie that supports lawsuits called wrongful birth claims.

When the first prenatal screen came out for Down syndrome, AFP, the American College of Obstetricians and Gynecologists did not recommend it because it was too imprecise for Down syndrome. But, then a mother sued her doctor for failing to counsel her about the option of AFP testing; she had a child with Down syndrome; and she sued and won a judgment for the claimed extra costs associated with her child having Down syndrome. The doctor was responsible because, according to the mom, she would have aborted had she known her child had Down syndrome. ACOG reversed itself and issued a liability alert cautioning its members to not only counsel their patients about AFP testing, but to document that their patients were so counseled.

These claims are based on the lie that because the doctor did not counsel the patient about prenatal testing, the child was born with Down syndrome. But no prenatal genetic test causes or reverses a genetic condition that occurs at or near-in-time to conception. The failure to offer AFP, amniocentesis, MaterniT21, or any of the other cell free DNA screens does not cause the child to have Down syndrome. These lawsuits are based on an untruth and should not be recognized, as almost half of all states have so ruled, either by court decision or statute that wrongful birth claims are not recognized in their jurisdictions.

The judgment award and the other driver of prenatal genetic testing–insurance coverage–is further driven by a lie. The lie that children with Down syndrome will cost millions more than a life without Down syndrome. This is simply untrue. Sure, it may have been the case when once a child with Down syndrome was born they were institutionalized, given no therapies, and therefore developed no skills or capabilities. But, that is not the case now.

Now, by federal mandate, a child is to receive early intervention therapy through age 3, and then have on-going therapy provided as part of their federally mandated right to a free and appropriate public education, provided in the least restrictive environment. Further, programs receiving federal and state funds exist to provide job training skills and job placement. Similarly, federal and state programs fund independent and semi-independent living options in the community.

As a result, most individuals with Down syndrome will be able to work by the age of adulthood, with the percentage able to live on their own or in a group setting continuing to rise. The out-of-pocket health care cost up to the age of eighteen is less than a daily cup of coffee.

But these lies about the cost of lives of Down syndrome are peddled, and bought, and used to support cost-effectiveness models to support insurance paying for prenatal genetic testing. Insurers justify the millions upon millions spent on tests for women–the vast majority of which are not pregnant with a child with Down syndrome–on the basis that the costs for testing will be less than the costs for caring for those lives with Down syndrome if they happen to be born.

How long will this oppressive, prejudiced, wrong regime remain? It has persisted since the dawn of prenatal genetic testing in the 1970’s. I wish I could say “Not long.” But, I do have faith that no lie can live forever. And the lie that motivates the development, marketing, lobbying, and decisions made about prenatal testing for Down syndrome is this:

Lives with Down syndrome should be avoided.

This is a lie based on outright bigotry against the disabled at worst and, at best, intentional ignorance. Those who know people with Down syndrome, those who are family members to people with Down syndrome, and those with Down syndrome themselves know that theirs is a life worthy of equal dignity and respect. Those who know people with Down syndrome know they should not be avoided, but welcomed and included.

If more will add their voices to speak out against these lies told about our loved ones with Down syndrome, then it will be not long before we can all say, ” Glory, Hallelujah. Glory. Hallelujah. Glory! Hallelujah!”

James & Juliet stand at the foot of the steps where Dr. King delivered his “How long, not long” speech. At the top of the stairs is a star marking where Jefferson Davis took the oath of office for presidency of the confederacy. Looking down the street on the left is the steeple for Dr. King’s first church, the Dexter Avenue King Memorial Church, where he led the Montgomery Bus Boycott.

What lies have you been told about Down syndrome?