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You say you’re pro-life, but then you want to limit health care for my disabled son

Jack Yancey and his mother, Hilary Yancey. (Preston Yancey)
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“It’s a good thing he was born to you. Most people would have aborted him.”

The him was my 6-month-old son, Jack, nestled into my arms, held at the angle he preferred — one that wouldn’t cause his tracheotomy tube to torque. His one and only eye remained fixed on me, his one and only ear perked, waiting for what I would say.

In those early days, I heard a lot about what brave parents we were, how no one else could do what we were doing, how anyone else would have aborted him, because abortion is what people do now. We didn’t ask to become a pro-life touchstone, but for many Christians, we became one.

Let me set the scene and explain how we got here.

When Jack was born with a rare condition called craniofacial microsomia, we needed help to cover the extraordinary costs to keep him alive. We lived in the neonatal intensive care unit an hour from our house for 43 days. We stayed in a hotel. We forced ourselves to sleep and trust nurses and doctors to keep the vigil by his bed when we could not be there. We sent him into surgeries. We learned to change a tracheotomy tube and set a feeding tube button. We publicly asked for help and the response was overwhelmingly generous. As we were being supported, we were also applying for Medicaid.

Having a baby with a tracheotomy requires having private duty nursing, or PDN. Without PDN, my wife and I would have to trade off watching our son sleep overnight to make sure that he didn’t either suffocate by pulling out his tracheotomy tube or drown by knocking the corrugated tubing delivering heated aerosol to his lungs during the night. We have good medical insurance, better than most, but the best insurance does not cover PDN, which costs about $40 an hour. Our insurance does not cover other costs, including the American Sign Language classes Jack needs to learn how to communicate in the way that is most comfortable for him. People’s generosity could only go so far, so we applied for Medicaid.

Many believe Medicaid gets frequently abused by lazy, uneducated or selfish people. Putting aside the racism and classism that’s tied closely to those assumptions, let me offer a counternarrative. I have a master’s degree in theology and aesthetics from one of the most prestigious universities in the United Kingdom. My wife is getting her PhD in philosophy. We are not lazy, uneducated or selfish. We are parents who fight so that our kid can have a quality of life, not just have life.

Ahead of the election, I warned that voting for Donald Trump meant voting for people who would seek to take away some of the access Jack has to a rich quality of life. Jack flourishes when Medicaid is uncapped, when he is automatically entitled to important medical services. But when I suggested voting for Trump was voting against Jack, I was told, “A vote for Hillary is a vote to abort Jack.”

My religious convictions lead me to identify as pro-life, a position I try to apply consistently across issues. For example, I oppose the death penalty and advocate for the ethical raising and slaughtering of animals. But right now, the conversations I have with other pro-life Americans seem tone-deaf and baffling.

On the question of abortion, while we knew Jack would have the physical differences he has before he was born, abortion was never a consideration for us. So even in hypothetical Hillary Clinton’s America, he would still have been born. That point is then met by the abstract speculation that the church should pay for his medical needs. Unless the church is prepared to pay hundreds of thousands in medical costs, I don’t see how this is a realistic solution.

One of the appointed readings from our church on Sunday this past week was from Acts. “And all those who had believed were together and had all things in common; and they began selling their property and possessions and were sharing them with all, as anyone might have need.”

This is a picture of how the early Church was supposed to function, but we don’t see a lot of selling of property and possessions today.

I want to believe better of the pro-life community. I want to believe they care about Jack’s long-term health and not just the fact that he was born. I want to call them pro-life, not antiabortion. But the conversations (or the silence) around health care makes us wonder.

My baby almost died one night. I saved his life by placing a tracheotomy tube into him when all the others would not fit. That tube was bought using Medicaid.

On a practical level, the church has not found the $40 an hour for PDN. It has not found the money for ASL classes. It has not found the money for therapies, breathing treatments, for stays in the pediatric intensive care unit. The state had found that money. The state, even in its deep flaws, has found the resources to give Jack a quality of life, not just a life.

Now Jack’s quality of life is being threatened since the House voted to cut Medicaid spending by 25 percent, shifting it from an entitlement program to a capped program. I am assured by many that Jesus loves capitalism, but the free markets do not love people with disabilities, with mental illness, with conditions that do not make them what our ableist culture considers “fittest.” How can Jesus love what hates Jesus’ own?

“It’s a good thing he was born to you. Most people would have aborted him.”

Most people want their kids to have full lives. Most people want you to mean it when you say pro-life.

Once upon a time, Preston Yancey wrote books. Now, he helps manage and onboard nonprofits with Pure Charity. He likes to cook, binge-watch esoteric TV and mostly eschews social media these days. (Except when it comes to health care and advocating for his son.)