This is part of our blog series on Disability and Youth Ministry. To read other posts from this series, visit this page.
“You never know. Maybe she will get up and walk. Maybe she will be able to eat and talk like other kids…maybe someday she will be normal.”
I have often heard these well-meaning words from friends, colleagues, and church folk about my daughter, Lucia, who was born with a progressive genetic disease of the brain. From the time she was just a couple months old, from her seizures, to her feeding tubes, and onto her diagnosis, our family has been confronted with the idea that Lucia is abnormal. But perhaps especially because she’s our first child and we know no differently, or perhaps because my husband and I have learned so much from her, I bristle at statements that suggest life would be better for us or Lucia if she would conform a bit more to the standards we hold for other kids. As a person of faith, I often wonder what God would have to say about our ideas of normal and how God might use children and youth like Lucia to fight against a culture that (perhaps un-self-consciously) worships ability and regards disability as a problem.
What would it look like for we in the church to change our normal ways of doing things to learn from those who are disabled? What would it look like for our churches to not merely find ways to include people with disabilities but be transformed by them?
In the 1970s disabled activists in Europe and the United States began to question the medical quality of disability. Noting that doctors, therapists, and medical knowledge maintained distinct power over their conditions and lives, they began to wonder if disability wasn’t as much a medical reality as a social construct. The subsequent social model of disability coined in the 1980s and sometimes called the minority politics model, suggests that disability, much like race or gender, may seem to have a biological basis, but actually operates through a social politics of exclusion. Disabled activists theorized that if we could get rid of the social barriers to disability, many people with disabilities could live freer, fuller lives.
In 1990, Congress passed the Americans with Disabilities Act, which provocatively defined disability as primarily social and invested private and public entities with the responsibility to make facilities and services accessible to people with disabilities. Since that time, not only have major institutions such as colleges and major public services such as trains and buses been adapted to service people with disabilities, but people with disabilities have become much more visible in our modern world. In a course I teach at Princeton University this semester, I invite students to reflect on whether this striking visibility connotes an increasing acceptance and inclusion for people with disabilities in society. Is this the “new normal?”
While so much, owing to disability activists and progressive politics, has changed, my students have come to discover that even if some physical and social barriers are dismantled, the cultural walls around normality, established and reified by medicine, education, even our Sunday schools—the “ableist” prejudice in our minds—often remain fully intact. Despite the ADA’s commitment to dismantling the social barriers to disability, our efforts to make space for people with disabilities are superficial if we fail to be moved ourselves, believing that the problem lies in the person with the disability rather than within us.
On the first day of the semester I have my students read a creative piece by a disability activist, Vic Finkelstein, about what it might be like for able-bodied people to live in a wheelchair world. In Finkelstein’s imaginative piece, the able-bodied people hit their heads on low door frames so frequently they become debilitated due to concussions, having to wear cumbersome helmets to get by. They struggle to make it in a wheelchair world where few opportunities are suitable or available to them: their able-bodied world is turned upside down.
Wasn’t this what Jesus was doing? Upending traditional cultural norms by uplifting the sick, the oppressed, the afflicted? Overturning tables in the temple, desperately seeking a “new normal,” a kingdom of heaven here on earth? We in the church are not called to conform to this world but “to be transformed by the renewing of our minds” (Rom 12:2). We are not called to conform to an ableist culture in which we live but to fight against it, seeking creative solutions to our manmade problems. What would it look like for we in the church to lead the way in loving, accepting, and appreciating difference in disability? What would it look like for we in the church to change our normal ways of doing things to learn from those who are disabled? What would it look like for our churches to not merely find ways to include people with disabilities but be transformed by them?
A couple months ago, my husband and I read an article about a teenager named Michael with cerebral palsy whom the Pope had reached out and touched during his visit to Philadelphia. The news story told the joys and struggles of the family’s daily lives, including one priest’s unwillingness to give Michael his first communion because he could not make his first confession. Embittered, the family didn’t give up but found another parish where the priest not only welcomed Michael’s first communion but gave him the Eucharist through his feeding tube each week at the altar.
I’ve yet to read or write about that moment without shivers, because I think there’s something instructive for all of us in experiencing and seeing the Eucharist being given through a feeding tube. There’s possibility in a new appreciation of the elements, in a new vision for community, in a broader, more expansive, better vision of God’s kingdom here on earth. When we in the church struggle to consider how we might serve Lucia or Michael, we are certainly doing good work. But when we consider how God might be using Lucia or Michael to serve us or force us to struggle with our unholy ideas of normality, we are willing to be transformed. How might your church respond?
Erin Raffety holds a B.A. in Cultural Anthropology, an M.Div. from Princeton Theological Seminary, and Ph.D. in Cultural Anthropology from Princeton University. She is currently a Lecturer in the Writing Program at Princeton University where she teaches courses on Modern Childhood and Disability. She is also an Associate Pastor at Grace Presbyterian Church where she coordinates burgeoning outreach and education programs for adults with developmental disabilities. Raffety’s academic work takes place at the intersection of Disability Studies, Childhood Studies, and the Anthropology of Kinship. Her current book project, Families We Need, follows elderly foster mothers who raise orphans with disabilities in modern China who are often adopted to the West. She has published broadly on childhood, disability, and intergenerational relationships in scholarly journals, and an article from her personal blog, “I’m Not Sorry,” was recently featured in the Huffington Post. She lives just outside Princeton with her husband, Evan and her daughter, Lucia.