The medical discrimination of disabled children
By Ryan Paul Buck
Disabled children are being discriminated against, and many can’t see it. Three days after my son Alexander was born we received his diagnosis, Trisomy-18. The doctor told us 90% of kids don’t make it to the age of one, that he was likely to die, that feeding him was a choice. We learned that genetic abnormalities can require interventions like tracheostomies to prevent the child suffocating to death, or a gastrostomy tube to prevent their starvation, as their muscle tone can be low. Is it humane to abandon a child to suffocate or starve to death?
When I learned today that Joe Biden would be highlighting a Trisomy-18 abortion story to scold his political adversaries in his State of the Union address, my heart churred up the same anger I felt towards the doctors who treated us so callously in the hospital.
I vividly remember the tone in our interactions with our son’s doctors after he received his diagnosis. Conveying to us disdain and belittlement for advocating for treating a disabled child. I had always assumed the medical community would be motivated to treat a person. But what we experienced was the de-personing, the stripping of human rights immediately after a medical diagnosis was confirmed. To them our son wouldn’t live and therefore lost his right to live. They were WRONG. Our son can walk and communicate with us. Not only did our son deserve his life, but his life inspires joy and hope. He puts a smile on the faces of those who spend time with him. My son gives what the doctors didn’t, acceptance and acknowledgement of value in every person he meets. He treats every human as a human, and expresses his desire to share a smile.
But our story is rare. With the Amniocentesis test that most moms get with the child still in the womb, it provides genetic screening without absolute certainty. Which prompts most doctors to recommend pregnancy termination with abortion for Trisomy-18, even in Catholic hospital systems (as our family learned).
We exist now in a world where many have become callus and cold. Some have turned from God with hardened hearts. This is a world where humans have usurped God’s values system for their own. Deciding who’s life is and isn’t worth saving and preserving. Since our son’s birth we have worked so hard to show that Trisomy-18 is compatible with life. It’s an uphill battle against what we found was a community head belief that Trisomy-18 meant certain death. And that same message is being affirmed again in the halls of the United States Congress by the 46th president in the State of the Union, for political points. A woman being honored for her choice to kill a child in the womb like our son, because of a diagnosis. A diagnosis used to assert the kind of life that would happen, deeming it not worth living. What about the choice and rights of the child? Does the child not have a right to life guaranteed in the US constitution?
Trisomy-18 should not be a part of the abortion debate because it results in the medical discrimination of disabled children. In our story, and the stories of hundreds of other families we have met with similar circumstances, the diagnosis changes the medical treatment opportunity for the child. In the case of the child spoken of in the State of the Union and many others, the diagnosis was his death sentence. God have mercy, please rescue this fallen world from such depravity.