Rev. Dr. Erin Raffety is a Lecturer in Youth, Church, and Culture in the area of Education Formation in the Department of Practical Theology at Princeton Theological Seminary. She earned her MDiv from Princeton Seminary and her PhD in Cultural Anthropology from Princeton University. She is an ordained minister in the Presbyterian Church USA. Her interests include culture, family, disability studies, ethnography, and theology.
Vennly: So much of your work and area of study has been around children with disabilities. How did you first become interested in the field?
Erin: I went to China in 2010 to do fieldwork for my doctorate in anthropology and study foster families raising children who were adopted abroad. It was only after I arrived and began to spend time with these families that I realized that nearly all of the families were raising children with disabilities. Today the majority of the children adopted from China to the U.S. are children with special needs, and the misperception is that people in China don’t want children with disabilities.
But not only are a very small proportion of children with disabilities actually abandoned by their parents in China, rather I also spent time with foster parents who loved and cherished these children; in fact, these families made such an impression on my husband and I that after returning from China, we wanted to start a family of our own. We had a daughter in 2014, a few months in she started having intense gastrointestinal distress and seizures, and at 13 months she was diagnosed with a rare, progressive, genetic disease of the brain.
Although life with our daughter hasn’t been easy, we were able to accept and love her as she is because we’d seen those foster families in China do that with their children. People always assume that I started studying disability because of my daughter, but my life’s work had already drawn me toward families with children with disabilities in China. I thought China was my last big adventure as a scholar, but the adventure was just beginning.
Vennly: You’ve been prolific in your writing and speaking on the topic of parenting a child with disabilities. Your op-ed a few years ago, “I’m Not Sorry” is an incredibly important contribution to the space. In your opinion, what is most misunderstood about children with disabilities and parents of children with disabilities?
Erin: That we wish our kids were otherwise and that the best ways to love us are to help us fix our kids or make them more normal. I know that sounds crude, but in America we still operate largely on a deficit model rather than a difference or diversity model with respect to disability. For instance, as much as we say we value and include kids with disabilities, our institutions (like medicine and education) suggest that people with disabilities must change the ways their bodies work and the ways they communicate to conform to the ways everyone else does.
That’s what I was exploring in “I’m Not Sorry,” that we subtly celebrate some kids but mourn others, and I want to live in a world where people with disabilities are cherished, too. When I look at my daughter, her differences don’t pain me, but the fact that the world can only see them as deficiencies and constantly wants to change her, do. So appreciating and accepting our kids as they are is a big thing and then not pitying us, but respecting us as families, advocating with us, and being appreciative of what we bring to parenting and caregiving in our uniqueness.
Vennly: How can people be better advocates for those with disabilities and their caregivers?
Erin: Like racism or sexism, ableism (discrimination against people with disabilities) isn’t just about individual actions, but is embedded in our ways of life and our systems of power. So when you go into businesses that are inaccessible, point that out and tell them you’re concerned that people with disabilities aren’t welcome there. When there is legislation that affects people with disabilities up for a vote, call your members of Congress and tell them about your friends and why this legislation matters. This is particularly important when it comes to Medicaid. A lot of people don’t realize that medically complex kids like my daughter may have private insurance but that doesn’t cover so much of what they need. They need Medicaid to survive, so protecting Medicaid is crucial to people with disabilities.
Our society is set up with the assumption that everybody is and can be able-bodied but that’s a conceit: about ten percent of people have disabilities and if we live long enough, most of us will experience some sort of disability. But it’s not just about accommodations, it’s also about getting institutions, like schools and churches, to value the gifts that people with disabilities bring to the table. When we really know and believe that they matter to our society, we’ll make these changes. I think religious communities have an opportunity here to be forces for social change: we should be at the forefront of seeking justice with people with disabilities, but unfortunately, we’ve largely capitulated to the status quo and a lot of people with disabilities feel unwelcome in churches, mosques, and synagogues. We need to change that, too.
Vennly: What are some of the topics that you’ll be discussing once the Vennly app is up and running?
Erin: I’ll try to give a personal insight into what it’s like to care for my daughter, of course. But as a pastor and a professor, I’ll also tackle the spiritual sides of disability, marriage, family, contemplation, caregiving, and culture. As an anthropologist, studying disability has given me a whole new take on what it means to be a person and what it means to experience the world in different ways; as a pastor, it’s changed my perception of who God is and what God is doing in our lives. Oh, and I’m obsessed with the enneagram, so I’ll probably talk about that, too!
Vennly: With the new year, what’s on your mind and what are you talking about with your community?
Erin: I just did an activity where I looked back on what I did in 2018 and I find so much value in reflection: it really wasn’t a great year for our daughter health-wise, but we continue to grow so much as a family, so I find a lot of solace in the ways in which I can sense God’s presence even in the challenges and difficulties. I’m doing a new research project this year where I’ll spend time with families with people with disabilities and try to learn from them and their lives to try to reverse engineer and improve how we minister to people with disabilities in religious contexts. So I’m really excited to learn with these families and these churches.
And in February in the church calendar, we enter the season of Lent, which is another tremendous opportunity to reflect upon God’s faithfulness and ultimately, God’s overcoming death in Christ’s resurrection. I love these seasons of the church, because they’re ordinary, yet extraordinary. God is somehow, despite the familiar rhythms of life, always teaching me something new.
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Twitter…TBD, Erin’s 2019 resolution is to get on Twitter…so we’ll see.