As a Presbyterian minister I knew very few folks who had a disability, and I figured the church’s role was to help them lead full lives. Then in 1996, while serving as an associate pastor of Mount Vernon Presbyterian Church in Atlanta, I sustained a traumatic brain injury (TBI) in a car accident. A simple frozen yogurt trip ended with me in a coma in one hospital and my husband of three months in another. In one second, I joined the disability community I knew so little about.
While I understood recovery from a TBI could be a long process, I had every intention to return as a full-time pastor. I attempted a couple of volunteer positions before I began serving as a volunteer chaplain at a retirement community in Atlanta. After co-moderating a disability sub-committee in the Presbytery of Greater Atlanta and in other ministry roles, it slowly became clear I would never be able to be a paid minister. After dealing some with my grief, I discovered that unpaid volunteer ministry can be just as rewarding. In 2004, I moved to Asheville, N.C., and I’ve continued working as a volunteer minister who has a disability ever since.
For this reason, when I saw the commentary written by Mark Pinsky about his new book “Amazing Gifts: Stories of Faith, Disability, and Inclusion” (2/18/13), I couldn’t wait to read it. After reading it, however, I simmered with resentment. “How could he write some of things he wrote?” I thought. I was particularly offended by one sentence: “I also tried to focus at least as much on people who ‘cope with’ as on people who ‘conquer’ their disabilities, as inspiring as the latter may be.”
“What does it mean to conquer one’s disability?” I wondered. “Have I not conquered mine because I don’t have a paid job?” It sounded like some sort of war game of which I didn’t want to be a part.
I noticed the foreword was written by Ginny Thornburgh, the director of the Interfaith Initiative of the American Association of People with Disabilities, a name I knew and respected, so I figured something had to be right about it. I decided to read it.
After reading it I shot off emails quoting certain passages to a couple of people I know whose opinions I respect, expressing my displeasure. Yet, I couldn’t shake the feeling that if Ginny Thornburgh wrote the foreword, it had to have some merit, so I persisted in my investigation.
People who have brain injuries often lose their ability to filter their emotions. We may laugh or cry at inappropriate times. We also may lose our temper and say ugly things we don’t mean. Through the years, I have learned how to manage this. If I feel like I’m going to lose my cool, I leave the room. Some brain injury survivors’ brains were injured in such a way that doing this is impossible. I’m fortunate I do not have this challenge — and it can be quite challenging.
For example, when I attended Oakhurst Presbyterian Church in Atlanta where Nibs Stroupe is the pastor, a group of us were carrying signs and demonstrating outside the church. Bob Gould, who had sustained a brain injury and has difficulty managing his emotions, was one of the group. Bob’s a tall man and very strong, while Nibs is short, and I highly doubt he’s very physically strong!
Someone in a passing car shouted things out the car door window and Bob got very angry and took off yelling after the car. The next thing I knew, Nibs had dropped his sign and was chasing after him. People who have brain injuries have been known to throw punches when they are mad. I had visions of Nibs catching up to Bob, and then Bob punching him in the nose. I put down my sign and I said a little prayer right there.
No one hit anyone that day, but I share this story to illustrate how folks with a brain injury often aren’t able to think things through before expressing anger. In a small way after reading the book, this happened to me, for I was bewildered by Pinsky’s last sentence: “Our only job is to understand and to help in any way we can.”
“No!” I shouted to no one in particular as I read his words. “Your job is to include us completely into the life of the church, for we have been called to serve God just as you have! We can learn from each other, but we can’t if you have that attitude!” (Notice I used the word “you” because I’m used to folks not understanding my disability. Only later was I able to change the word from “you” to “we.”)
After calming down, I remembered Ginny’s words in the foreword: “As I talked with people and listened to their stories, it became clear that the message needed in an Orthodox synagogue is the same message needed in a Catholic parish or in a Friends meeting house: that people with disabilities, like all people, deserve to be treated with dignity and respect; that barriers of attitude are more difficult to identify and remove than barriers of architecture and communications; that congregational disability work is about justice, not about pity; and that enormous gifts and talents will come to congregations, no matter what the faith, once people with disabilities are included, enjoyed, and encouraged to be active and full participants.”
I decided to get beyond my anger and look at the book again more deeply. I’m glad I did, for I made an important discovery about myself. I have shifted, in the words of Stroupe, from being “superwoman to acknowledging my brain injury. Much of the discomfort on the culture’s part comes from our knowledge that we are all vulnerable and needy in one way or another, and in a culture that emphasizes self-sufficiency and independence and control, that knowledge is definitely a no-no.”
Those of us who have disabilities have been forced to accept the truth Jesus taught: None of us can make it alone. People with disabilities have great difficulty using their gifts in a world that values self-sufficiency. When I lived in Atlanta, I didn’t want anyone to see my challenges, and since my disability is invisible, it was easy to hide. No one had to know I forgot their name after knowing them for six years. No one had to know that the only way I could get to places was to have written directions, even if I had been there dozens of times. No one had to know that my ability to process information is much slower now, so I often must leave a meeting due to what is called, “cognitive overload.”
About six months ago, I decided to quit pretending and let folks know my struggles. At first, this confused people. I had to ask someone I’ve known for six years their name because I couldn’t remember. I’m also open about my inability to remember directions. This can be as simple as remembering which way to walk down a hallway after leaving someone’s office. I hate being seen as some “stupid woman,” but I’ve discovered that most often people don’t see me this way, even when I do.
I’ve also become open at how I just don’t have what is called the “cognitive energy” that I used to have because some of the neurons in my brain were injured in the accident. This means I have to “rest my brain” often by using ear plugs or by listening to classical music. I’m very conscious this is a learning issue for many if not most folks. I imagine it is strange to watch as I, this intelligent woman, get lost simply walking down the hallway!
In the conclusion of his book, Pinsky quotes Henri Nouwen: “The question is not ‘How can we help people with disabilities?’ The more important question is how can people with disabilities give spiritual gifts to us and call us to love?” Pinsky continues, “Learning how to recognize the gifts and talents of children and adults with disabilities can transform congregations and their leaders. The question, ‘What are we going to do about Mrs. Jones?’ as if she were a project, changes to ‘How can we make it possible for Mrs. Jones’s gifts and abilities to lead all of us into a deeper spirituality?’”
In order for the Presbyterian Church (U.S.A.) to be the true Body of Christ, we must allow all of us to serve. Those who don’t speak or see well, use wheelchairs or, like me, have limited cognitive energy, have much to offer. The struggle for people is to recognize our gifts. I challenge those of you who don’t have a disability to learn from us, for we have something to teach you. Those of us with disabilities have something to learn from you as well. We are truly the Body of Christ together.
TAMARA PUFFER is a Presbyterian minister who attends Grace Covenant Presbyterian Church in Asheville, N.C.