When A Diagnosis Determines Your Worth

If you Google ‘Down syndrome’, you’ll find pages of online organizations and dictionaries that provide both general and specific definitions. Most will include something like this:  

“A congenital condition characterized especially by developmental delays, usually mild to moderate impairment in cognitive functioning, short stature, relatively small head, upward slanting eyes, a flattened nasal bridge, broad hands with short fingers, decreased muscle tone, and by trisomy of the human chromosome numbered 21.”

~Merriam-Webster English Dictionary

As one who seeks to communicate clearly through written words, I understand the need to provide adequate information and appropriate descriptors but as the parent of a child with Down syndrome, seeing his diagnosis in print is difficult. Those definitions simply do not capture the wonder that is Sam but, to be fair, they’re not designed to do that.

I know that my son’s value is not determined by his diagnosis but sometimes our world tells a different story. The history of how American culture defined, perceived, and treated people with Down syndrome is quite dark. Here’s a brief timeline:

• 1773. First insane asylum opens in Williamsburg, VA. In the next 200 years, thousands of people with intellectual disabilities were funneled through various state-wide institutions.
• 1838. First document to ever record people with intellectual disabilities as ‘idiots’ (to distinguish from those who were classified as ‘insane.’)
• 1866. John Langdon Down, who discovered Ds, refers to the collective traits he discovered as ‘Mongoloid’ because their facial characteristics resembled those from Mongolia.
• 1883. Sir Francis Galton first uses the word ‘eugenics’ to describe how Americans must assign value to those with intellectual disabilities. As a result, laws were passed, demanding forced institutionalization and sterilization of those with disabilities.
• 1912. The Kallikak Family, a best-selling book is released by Henry H. Goddard. The book builds and perpetuates the false premise that intellectual disabilities are connected with immorality. Mass social hysteria ensues, calling for forced sterilization and institutionalization.
• 1939. Hitler demands the extermination of 200,000 people with intellectual disabilities–many with Ds.
• 1946. Parenting guru, Benjamin Spock, states in his popular book, Baby and Child Care, “If [the infant] merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.” (p. 478)

Not until the 1960’s and 70’s did the U.S. begin to shift its perspective, thanks in part to President John F. Kennedy. S L O W L Y, public outcry led to the closing of institutions and the passage of human rights laws as parents, caregivers, educators, and people in power demanded equality for people with disabilities. Their tireless efforts and stubborn voices blazed trails for the rest of us to follow. The trail has widened as more of us speak up for and seek to empower those with Ds, while educating the general public on the benefits of inclusive spaces.

Humanity. Equality. Rights. Inclusion. These speak to progress, yet within the highly educated medical community, most doctors and geneticists continue to apologize to women when disclosing a prenatal diagnosis of Ds, often just moments before they suggest termination as a solution. Despite their ‘smarts,’ many medical professionals are quick to provide a dark and limited option for expectant mothers, “Either your life will be really hard or you can abort.” (Actual words spoken to a friend.) In a world where we can choose from 15 different kinds of toothpaste, this either-or nonsense seems like a cruel irony.

As I write, many European countries are inching their way toward eradicating Down syndrome. With prenatal testing considered normative (and I’m not at all judging the tests), the number of abortions continues to rise. If we believe that a baby in a mother’s uterus is a human, this would be genocide, no?  

Cognitively impaired.

Idiot.

Feebleminded.

Mongoloid.

Delayed.

Retarded.

Problem.

Hardly human.

Really hard life.

Words like these make it easier to justify the extermination and ongoing exclusion of a vulnerable people group and the mothers trying to decide whether it’s worth the lifelong risk of birthing them. Why bring them into a world that doesn’t value them in or out of the womb? It seems we’ve failed both women and children.

I wonder, is this really the kind of culture we want to sustain? To refuse to stand with women who need support (financial, emotional/mental, medical)?

To leave pregnant women with limited options at a crucial time?

To offer an apology when she’s given a prenatal diagnosis?

To end life because of a possible diagnosis?

To vote for the traditionally *pro-life* political party, even when those candidates won’t sign bills that provide equal opportunities and fair wages for people with Ds? (I’m looking at you, Republicans.)

To maintain the status quo by keeping people with Ds out of classrooms and work spaces and airplanes?  

To associate only with people who look like us by hosting parties and gatherings in which we don’t invite those who have Ds?

To refuse to consider the authenticity of our ‘seeker friendly’ churches, which don’t really create space or provide resources for those with Ds?      

If we claim to be pro-life advocates, we need to rethink the issues of diagnosis and worth and inclusion and what they mean for both mothers and their children with Down syndrome. 

We must provide ongoing support and updated, accurate information when expectant mothers receives a prenatal diagnosis of Down syndrome. If we really value women, we must work to improve employee maternity leave and insurance coverage. (In related news, Down syndrome is considered a ‘pre-existing condition’–which means ‘limited/no coverage’ with most private insurance companies.)

We must use appropriate language and terms and offer more than one option for expectant moms.

We must remember that a baby in the womb deserves a chance to be born.

We must be graciously present for women no matter what they decide.

We must show up for new moms and their families, embrace the gift of their friendship, join them in Buddy Walks, vote for candidates who advocate for the differently-abled, and find other ways to engage this new community.

Children with Down syndrome are more than limited definitions, their mothers more than mere recipients of a diagnosis. Both bear Divine fingerprints, offering beauty, joy, and delight to our world–if we’re willing to see. We must endeavor to become a society that takes their hands and says,

“You are seen. You are loved. You belong.”