Walk Away from Bullies, Pull Up a Chair & Listen to My Family (by Erin Raffety)

Erin & her daughter Lucia. [image description: A mom with long dark hair, wearing sunglasses, poses with her disabled daughter.

These past few weeks as our country teeters on a precipice, and despite what I was taught in kindergarten, I find myself fantasizing about having a bully on my side, being as cruel as it takes to cut down my fiercest opponent.

I should know how good that sounds, because in this political climate, my family is considered weak and needy. 

My husband and I are both highly educated and work at fulfilling jobs. Our daughter is six, and she lights up any room with her wide smile and her infectious laugh. Lucia has a progressive, genetic disease of the brain, but with the proper medical care, therapies, equipment, and treatment, she can have a high quality of life. 

When I started telling my family’s story four years ago, about how our private insurance didn’t cover what my disabled and medically complex daughter needed to survive and thrive (so we rely on Medicaid), our vulnerability was on full display. Yet, I was pleasantly surprised to find most people understanding, empathetic, even grateful to be informed about an injustice they simply did not know existed.

A few years later, when this Administration and Republicans tried to repeal the Affordable Care Act (ACA) through legislation and my daughter’s Medicaid was on the chopping block, people seemed willing to acknowledge how scary that was for my family. Even if they had qualms about universal healthcare, or it didn’t seem to affect them directly, they understood why I was worried. They could see it from my point of view.

But this year, when my medically complex daughter’s healthcare still hangs at the mercy of this Administration, Congress, and the Supreme Court, it seems like people have stopped listening.

Perhaps they’re tired of hearing me advocate and worry. But more often these days, they actively deny my fears, and they casually brush off my concerns, telling me that there’s nothing to worry about. I’m over-reacting, they chide. Everything will be okay.

It seems harmless, even good-natured, to tell someone they don’t need to worry. But there’s a calculated disdain and distancing in these comments that makes me fearful. I wonder how people can diminish my concerns when they know my daughter’s healthcare has been under threat for two-thirds of her short life. How can they tell me not to worry when they support legislators and an Administration that have kept her healthcare in jeopardy in the midst of a global pandemic? How can they think I’m overreacting, when all I’ve ever wanted was to keep my daughter safe and healthy?

I worry that I’m witnessing the making of a nation of bullies.

Bullies aren’t born cruel, they’re made that way. Over time, as they grow callous to other people’s fears and feelings, they engage in gaslighting and victim-shaming, numbing themselves to reality. That numbness lets them imagine the world otherwise.

No one thinks they’re a bully, even those who support one. But if you’re cheering one on so loudly that you can’t hear the cries of distress coming from your neighbors above the noise, just who is it that you have actually become?

Lucia Raffety-Schneider. [image description: A young disabled girl wears a pumpkin costume for Halloween. Her wheelchair has been turned into a pumpkin patch costume, with a white picket fence, green vines & additional pumpkins.]

I’ve struggled with how to continue to advocate for my daughter in this abusive political climate. How many times will we stick our necks out, believing it will be different, only to be told by someone that it’s not as bad as we think it is? Everyone tells you that the best way to deal with a bully is to turn around and walk away, but how do you do that when they’ve got you by the neck?

It was only this evening that I realized, maybe I can’t walk away, but you can.

You can stop cheering on a bully. You can walk away from apathy. gaslighting, aggression, and cruelty.  

When you walk away from a bully, you can walk back toward those people in need in your life and in our country, and you can pull up a chair and listen. You can move toward people who matter to you, and try to understand and accept their pain, their hurt, and their fear.

When you see someone else’s fear and pain, you forget yourself because you start seeing them more clearly, maybe for the very first time.

Walk away from the bully, come closer to your neighbor. We will need each other to turn this country around.

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Rev. Dr. Erin Raffety is a Presbyterian pastor and a Research Fellow at the Center of Theological Inquiry where she studies congregational ministry with people with disabilities. Besides her academic work, Raffety has published with The Huffington Post and Church Anew.