Erin Raffety: Leaning into Disability, Lamenting with Freedom
I remember how it felt to choke out those words. I remember how my teeth clenched around them. I remember how my chest tightened as I stammered in our living room to my spouse.
“I’ll be dammed if after all Lucia has been through, this virus is what kills her.”
It surprised me a bit when the words came tumbling out. I thought I had made peace years ago with my young daughter Lucia’s medical fragility and especially with her terminal diagnosis. But the global pandemic—especially the shortage of PPE and other medical supplies, the overwhelm of physicians and hospital staff, and the increased vulnerability for individuals who rely on full time nurses and caregivers—has created new challenges for people with disabilities.
On the one hand, the rest of the world is gaining a glimpse into the many challenges people who live with chronic pain, disease, and disability face every day. The world has also benefited tremendously from people with disabilities’ ingenuity in confronting such challenges through the use of technology, universal design, and creativity. People with disabilities have always utilized a combination of online and in-person platforms to network strategically, protest boldly, and adapt courageously in an able-bodied world.
But the pandemic has also revealed how deep the roots of ableism run and how intertwined they are with sexism and racism.
People of color and people with disabilities are dying at much higher rates than average citizens. Plus, the medical needs of some are so often positioned as an additional burden for the country rather than an invitation to justice or care.
Indeed, as churches especially are clamoring to return to face-to-face worship, nostalgic for the simplicity and straightforwardness of ministry in the pre-Covid days, it often feels as if they presume all their challenges will be erased with this return to “normalcy.” Sometimes it feels like we want to sweep aside any perceived weakness or suffering if only we could get back to the “good old days.”
We incessantly talk about the pandemic. We try to control the logistics of returning to worship. We so rarely talk about how it feels to be terribly, utterly afraid.
Sometimes it’s easy to get the idea in the church that being fearful is a sign of faithlessness. If “perfect love casts out all fear,” you certainly can’t be scared and trust God at the same time.
But squashing our fears with logic or brute strength doesn’t seem to make us more faithful. Ironically, as we bury, stifle, and stuff down our fears, we drive more social distance between us than this virus ever could. We shut ourselves off to real relationship. We become numb before God.
In mid-March, a class I was co-teaching with students with intellectual and developmental disabilities at The College of New Jersey and master’s students at Princeton Seminary had to go online like all others. As we fumbled through our new virtual ways of relationship, we figured we at least knew how to pray together. The other instructor, the seminary students, and I carefully crafted beautiful, theologically astute prayers for patience, healing, resilience, and strength in the face of a global pandemic. These prayers were abruptly punctuated by the TCNJ students’ cries against the injustice of those they knew who were getting sick (“It’s not fair! This is scary!,” they said), their hurt from being alone (“I’m sad at home. I miss my friends”), and their fears about what might happen in the future (“What if this never ends?” they worried).
It was not only a profound teaching moment for my seminary students who were taken aback yet strangely comforted by the earnest expressions of emotion that poured out of their friends and classmates. This moment was also a powerful reminder of how the ritual of lament in the Bible provides a container for our seemingly out-of-control emotions to be honored, held, and known by God. With lament, God essentially says, “Let it all out, I can take it. Faithfulness is not about keeping it all together when the going gets tough.”
In light of these laments, I can now see clearly how my clenched teeth and tightened chest were but an attempt to control my own anger, frustration, fear, and trembling. I didn’t want to open up to the possibility, yet again, of losing my daughter. If I stood before God and others in my deepest fears, would I not become utterly powerless, defeated, and obsolete?
Leadership and lament are not about us. Leadership and lament are about God’s faithfulness—about how God crouches down in the dirt with us, envelopes us precisely when we let go, grieving with us, laboring with us, growing us back toward one another. What if in leaning into chaos and fear, we don’t lean away from, but into God? Where can we flee from God’s presence? Even in our powerlessness, won’t God find us, even more so?
God has promised to turn our mourning into dancing. But maybe we who refuse to mourn also cannot dance.
A country that remains numb to its pain, fear, and injustice cannot feel God’s comfort. Churches that do not have the courage to open themselves up to the deep-seated fear of their people will never preach hope.
But God will not forsake the broken-hearted. Would that we would bear our broken hearts with one another in faith so that God’s Kingdom and God’s justice might come quickly to this earth. Would that we would be known to the world as a sanctuary for the broken-hearted so that no one would have to be afraid alone.
Erin Raffety is a Presbyterian pastor, a Cultural Anthropologist, and Research Fellow in Pastoral Care & Machine Intelligence at the Center for Theological Inquiry. She is currently working on a book on the ministry and leadership of people with disabilities in the church.
Used with permission. Originally posted on Church Anew, a ministry of St. Andrew Lutheran Church in Eden Prairie, MN.
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