It's May! What does that mean for your schedule as a professor?
Well, my schedule begins to smooth out. As soon as graduation week is over there is an amazing lull that feels a bit disorienting and unusual. Actually, it's quite refreshing not to have meetings and classes filling the days. So I'm trying to enjoy the space a little before I get down to work on the different projects I've put off until the end of the semester. It's nice to take some family time and do some non-academic reading.
I imagine you're pretty busy at home too with two teenage sons. And you just moved to Canada! Tell me about your family. How's the family adjusting to life north of the border?
The move northward has been good for us as a family. There are wonderful health care resources in the Toronto area for Chris, our oldest son. And both Chris and Evan have landed in some very good schools. However, it has been hard for the boys to leave friends behind, especially now that they're teenagers. They've made many new friends, but still keep in touch with friends from the USA-thanks Facebook and Myspace. Mary, my spouse, loves it here. Her dad lives in Toronto for part of the year. Plus, she enjoys the vibrant city life. So overall we are adjusting and enjoying life in Canada.
Your family proved inspiration for this book. In your introduction you tell a moving story about an experience you and your wife had at church when Chris was 7 years old. Tell our readers what happened.
Basically, some members of the church found Chris too "disruptive" in Sunday School. He was not respecting the physical space of other children and repeatedly used profanity. So some parents got together and confronted the minister about it, asking him to communicate to us that Chris would no longer be welcome. They presumed that our parenting skills or family life must be in disarray for him to be manifesting such inappropriate behavior. Mary and I thought they might be right. So we tried going through various behavioral programs and family therapies. What we didn't know at the time, however, was that Chris was showing signs of Tourette Syndrome and Asperger Syndrome. These went undiagnosed until several years later.
You mention that you stopped going to church for a while. What got you going again?
Yes, after this incident we stopped attending church. I admit, Mary and I understood why the parents of other kids would be upset. If we were in their position, we'd be concerned as well. But we also felt betrayed and deeply hurt. They didn't think to come talk with us. Actually, only a few people took the time to come talk with us, asking if there was anything they might do to help. That was what really got to us. It ended up being too hard to protect Chris and ourselves, putting on the public face of being a "together" family.
We started going to church again after moving to Green Bay, WI, for my first job teaching. I had been invited to speak at a local Presbyterian church, and we found the people there quite welcoming. The minister and his wife personally reached out to us. So we took the risk of attending more frequently. It ended up being a graced risk, for people not only accepted Chris, they actively embraced him and took an interest in our family's wellbeing. As I think back on it, we went to church, but the greater story is that church found us. And through it, the grace of God found us. We miss the people at First Presbyterian a great deal.
When did you start to think about disability issues in your professional life as a theologian? What are some of the influences and experiences that set you off on the path to writing this book?
The issue of disability first came up for me long ago when I read some of the writings of Henri Nouwen and Jean Vanier, who were associated with L'Arche. When difficulties started to beset our family, I turned to this literature again for counsel. Gradually, as Chris's diagnoses became clearer, I began to read more and more about disability, looking especially at material from the growing field of disability studies.
All the while, however, I continued teaching theology classes that dealt with themes like creation, human nature, suffering, redemption in Christ, church, and so on. It became noticeably odd to me that I was saying certain things in class that directly contradicted my own experiences as a parent of a child with disabilities, not to mention contradicting what many were now saying about disability. The dissonance compelled me push deeper. I began studying in earnest.
Soon I realized that I had to write something. Not so much because I had some great set of insights to share with the world, but more personally, because I felt the need to articulate a theological perspective that attended more directly to my family's experiences and honored Chris for who he is as a child of God. You might say that the book "called" me. There was no getting out of the material; I was living it. In the end, though, my hope is that the finished product might somehow help others, too, in the task of thinking differently about matters of Christian faith and disability. Yes, churches can do better at welcoming people with disabilities, and I'm trying to suggest that the reasons for this lie at the heart of the gospel message.