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Holly Richardson: ‘Eradicating’ Down syndrome leads us down a very slippery slope

Parents need support. Programs that support parents and their children need support.

Earlier this month, CBS reported that Iceland has nearly eradicated Down syndrome. What they meant to say is that they have eradicated people with Down syndrome by aborting them. 

Iceland is not alone in its attempt to “eradicate” people with Down syndrome. In Denmark, the abortion rate for babies diagnosed with Down syndrome is 98 percent, in France, it is 77 percent and the United States now sits at about 67 percent.

What a tragedy.

Gandhi said, “The true measure of any society can be found in how it treats its most vulnerable members.” How are we doing?

Do we rate life on a sliding scale? Are some babies more deserving of life than others? Once we start to “rank” who is worthy of living, we head right on down a very slippery slope.

Our daughter Kristiana was adopted from a Russian orphanage in 1998. She was abandoned at birth because she is missing some fingers and toes. One of the orphanage workers shook Kristiana’s little hand in the air and wanted to know why I wanted to adopt a “bad baby.”

“This is a bad baby. Get a ‘good baby’,” she said.

For crying out loud. Disabilities do not make a baby “bad.” (By the way, she is now 21, stunningly gorgeous, gainfully employed and never let a few missing fingers slow her down.)

We also adopted a little girl from Romania with Down syndrome in 1991. At 18 months old, she weighed 13 pounds, or the size of an average three-month old. She had scars on her head that suggested some kind of experimental surgery. No one would ever tell me how she got them.

When the adoption was complete and we applied for her visa, we found that she was prohibited from entering the country. The list of conditions banned by the Centers for Disease Control included Down syndrome — as if it might be contagious. We had to obtain a special exemption by the CDC to allow her to immigrate.

Lois Lowry in “The Giver” speaks of a world of a “life where nothing was ever unexpected. Or inconvenient. Or unusual. The life without colour, pain or past.” The reason nothing was ever “unexpected,” of course, is because anyone who was different was killed off — a smaller twin, an off-course pilot, the elderly. The desired utopia was dystopian.

So again — do we rank life on a sliding scale?

I believe the stories of “eradication” coming out of Iceland have rightly caused an uproar. But let’s be clear — it’s not enough to be pro-life when it comes to having babies but then refuse to support them and their families once they’re here.

Parenting is hard. Parenting a child with disabilities can add additional layers of difficulty, including juggling doctor appointments, therapy appointments, siblings and emotional complexities. Becoming a mother to a child with disabilities some 29 years ago was my first introduction to deep grief, but never did I consider her life one not worth living.

Parents need support. Programs that support parents and their children need support. In Utah, the waiting list for services from the Division of Services for People with Disabilities (DSPD) has a waiting list that is years long. Years. We got on the waiting list with our severely disabled daughter, Elizabeth, hoping for some respite care. She was on the list for more than 10 years and died never receiving any services.

We also knew that if my husband and I were separated or divorcing, or going bankrupt, that we would have risen higher on the list. There is something wrong with that picture.

Certainly we can all do more to help our neighbors, but there is also a place for a safety net that will support those with disabilities and their families. Too many parents of children with disabilities hear people say, “Hurry up and die and decrease the surplus population,” when politicians talk about cutting services in the name of “fiscal conservatism.” That needs to change.

Pope Francis said “All life has inestimable value. Even the weakest and most vulnerable, the sick, the old, the unborn and the poor, are masterpieces of God’s creation, made in his own image, destined to live forever, and deserving of the utmost reverence and respect.” Amen.

Holly Richardson considers being a mom, including a mom to children with disabilities, as her greatest challenge and blessing.