In 2019, Laura MacGregor and I received a grant from the Louisville Institute to conduct a qualitative research project exploring the experiences of parents and guardians of children with disabilities in their churches. The study involved a research team of six interviewing 20 participants. The results were not altogether surprising. My elevator speech summarizes the findings as a “good news, bad news, good news” story.

The good news is that families dealing with disabilities see spirituality as a resource for coping with the many stressors that complicate their lives—such as financial, emotional, psychological, and physical challenges, along with sleep deprivation, social isolation, and grief, among others. The bad news is that churches are rife with ableism. Most of the families we interviewed experienced physical and social barriers within the church, along with attitudinal, spiritual, and theological obstacles. Many felt that their children were unwelcome and unsafe, which often led parents and guardians to have negative experiences with their faith communities. Some commented that they came home from church feeling depleted rather than empowered.

But the good news is that when the church functions well, it provides friendship, support, justice, spiritual resources, safety, and a space where people feel heard. More importantly, when the church truly embraces people with disabilities and their families, it also receives their giftedness, which helps it more authentically become the church it is meant to be.

Each participant had their own story, filled with both tragedy and joy. One participant, whom we call Prisca (a pseudonym), had a young child—Orpah (also a pseudonym)—who was 3 years old and struggled with a significant disability that impaired her ability to move, speak, and develop. Children with Orpah’s condition rarely live beyond early adolescence. During the interview, Prisca spoke about the church’s capacity to assist families in grief, stating, “I think the church does grief very well.” She contrasted this with broader social movements and organizations, which often ignore or downplay death. Those of us actively involved in faith communities regularly pray for the ill, care for the dying, and support families in times of grief. Prisca observed, “We’ve been grieving from the start.” She noted that even for families whose children do not face imminent death, there is still grief over life’s limitations and unrealized dreams. Growing up in a church community that regularly supported families through grief, she recognized that not all grief is about literal death—skills developed for dealing with physical death apply well to other forms of loss too.

I have been reflecting on this for some time. I appreciate how Prisca reframes the conversation by encouraging faith communities to consider what they do well and how those skills might be transferable to supporting the disability community. This certainly applies to the topic of grief, as churches—like synagogues—often draw on Psalms and Lamentations. Both books provide words for experiences that seem beyond expression, offering a safe space to articulate fear, sadness, worry, and anger. Lamentation is a powerful tool for processing grief.

I’ve been reading a book by Karen Gray entitled Grave Attending. In the first chapter, she discusses how lamentation and hope are “concomitant,” or interconnected. This has been an enlightening realization for me. Both lamentation and hope address the reality that things are not as we wish them to be: we lament what is lacking, and we hope for what could be. Both express absence, yet also envision a presence. Insofar as hope is the flip side of the coin that shows us lament, practicing lament is often accompanied by the subtle arrival of hope. I believe Prisca is onto something.

During our interviews, we asked participants to provide a metaphor or image that described the church for them. Among the negative responses, we heard images such as a pointing finger, an excluding circle, or a cruise ship keeping people with disabilities at a distance on a tugboat. However, there were also positive metaphors: warm bread, a circle of light. Prisca compared her experience of the church to a tree—offering deep roots that enabled her to grow and move in new directions. I find this to be a hopeful image of the church: a place that grounds grieving people in lament, enabling them to grow, with hope, into communities of kindness and justice.