Imagine a World without Down Syndrome

Recently, our family sat around the dinner table marveling at Sam, our toddler who happens to have Down syndrome. His hilarious antics provide comic relief  in a season of life that has left us emotionally and physically spent. His smiles and shenanigans bring light into a new year that feels dark and at times, less-than-hope-filled.

As we cleared the table and our laughter faded, I began to wonder what our life-Sam’s life-might be like if he did not have Down syndrome. Thoughts swirled in my mind all evening and in the weeks since as I began to further explore what that would mean for us.

When I imagine a world without Down syndrome, I find two lenses in which to look.

If I look at Ds through a partial lens, I see:

• A hard, discouraging life for Sam and our family
• Potential for major medical issues, which could add financial stress
• A weak immune system that keeps us home bound when he gets a minor cold
• Continual therapies, additional visits to the pediatrician, and appointments with other specialists
• A son (and his siblings) who are more likely to be teased, excluded, and bullied
• A son less likely to understand complex issues
• A son less likely to be employed, financially contribute to society, or live independently
• Physical features that invite others to stare
• Communication struggles, due to speech and hearing deficits
• A son who requires more of our time to train and educate
• Developmental delays in every area

With this perspective, who would knowingly choose to parent a child with Down syndrome? The logical conclusion, encouraged by most medical professionals, is to eliminate the {perceived} burden and opt for a less complicated life. Sam’s birth mom was given a partial lens and told to consider the “alternative” to birthing her son.  “Abortion was never an option for me,” she said. Though she could not parent Sam for various reasons, she knew the hidden treasure within her growing womb.

If I look at Ds through a complete lens, I see:

• A challenging but rewarding life
• Major medical issues that can often be improved with surgeries, proper medications, therapies, and education
• Opportunities to trust God with financial concerns
• Sweet smiles and adorable almond-shaped eyes
• Atypically short, stubby fingers that lovingly grasp my own
• Relationships with Sam’s wonderful therapists
• Connections with other families in the Ds community
• Opportunities to practice a deeper level of patience in our home
• Greater compassion for those who struggle to learn or understand basic skills
• Greater awareness of the beauty found in those with disabilities
• Greater sensitivity of language and tone when speaking to or about others with disabilities
• A welcomed slower-than-normal pace to growing up
• The need to advocate for resources and laws that positively affect those with disabilities
• Refusal to participate in the comparison game that our culture pushes
• Overwhelming gratitude when Sam reaches a milestone

Over the past several months, the United Kingdom has announced government approval for a non-invasive prenatal blood test (NIPT) to determine whether a mother is carrying a baby with genetic abnormalities, namely Down syndrome. The NIPT is 99% accurate and can be done at 12 weeks gestation. The purpose of this test is to provide an alternative for high-risk pregnancies in which a more invasive genetic test could cause a miscarriage. This test can be helpful in preventing miscarriage while also providing information that will help families better prepare to raise a child with Ds. While many praise the NIPT, advocacy groups are concerned that an earlier diagnosis will lead to increased abortions of babies with Ds. They fear eventual, mass genocide. For all the strides that the world has made to advocate for those with Down syndrome, the NIPT feels like a major setback, despite its intent.

I do not write to share my opinions on the NIPT but to explore the potential implications of it. If we assume that the NIPT will lead to mass genocide of the Ds population, how might our world respond? If we answer that question based on current global statistics on abortion due to a Ds diagnosis, the results are quite sobering for families and advocates of those with Ds.

Should we seek to eliminate an entire people group based on a preliminary diagnosis of a (possible) disability? Do potential hardships, complications, or inconvenience justify the annihilation of an entire population? I answer with an emphatic, “No.”

As a person who claims to follow Jesus, I am drawn to the Scriptures where I find the Great Physician healing those with “all manner of sickness and all manner of diseases”. While Down syndrome is neither a sickness nor a disease, the Bible clearly teaches that Jesus was compassionate toward and offered healing for those with disabilities. Numerous references speak to His healing of the lame, deaf, and mute–the misfits, the lepers sent outside the city gates. City leaders rid their communities of those with disabilities whom they declared “cursed”, with no right to contribute to life inside the walls. But Jesus had a place for them at His proverbial table.

Do we?

I wonder if people with Down syndrome were brought to Jesus for healing. And if so, did He choose to heal them? Did He even think their healing necessary? Perhaps our broken world–not the Creator– finds Ds to be a major flaw, a problem to be “fixed”, a reason to end life. We no longer put those with Ds outside our city gates, nor do we institutionalize them (in the U.S.), but we have found a tragic alternative—a more sophisticated way to end a population many would rather discard. They are often deemed burdensome, conceived in a world that cannot be bothered to slow down or accept what cannot be labeled ‘typical.’

A few weeks ago, I asked our kids this question: If Sam did not have Down syndrome, what would you miss?

Our 9 year-old said, “I would miss him growing up slower because if he didn’t have Down syndrome, he’d get bigger sooner and I wouldn’t get to enjoy him as much.”

Our 7 year old said, “I would miss his smile and laugh. They’re cuter because he has Down syndrome.”

Though their answers are simplistic, our kids get it. They understand that life is a bit more complicated with Sam’s diagnosis but they look at him and Ds through a realistic lens. They see an adorable, mischievous little brother who takes the scenic route when it comes to growth and development. They don’t force him to meet milestones, to be more than he was meant to be, but they encourage him to aim high. They are compassionate toward a brother who qualifies as “the least of these” and they are more aware of and friendly toward those with disabilities.

Maybe it’s time to take a closer look at our personal & cultural values. Do our lives reflect the God of life who embraces the *perceived* weak and vulnerable? Do we have friends with disabilities? Do our churches, schools, sports teams, and even birthday parties welcome and make provisions for those who don’t fit “the norm”? Do we engage only the capable, the ones we find easier to relate? Are we willing to embrace those who look different from us? Or are we content with a culture that caters to the elite, the ones with fewer needs, the ones who can financially contribute?

While Down syndrome does not define Sam, he would not be “Sam” without it. He would lose some unique qualities woven together by a loving, creative God who makes no mistakes.

I cannot imagine our lives without Down syndrome. It has brought light and laughter and lessons we would have otherwise missed.

Resources:

https://www.theguardian.com/society/2016/nov/04/new-prenatal-test

http://www.bbc.com/news/magazine/A World without Down’s Syndrome by Allison Gee