You were diagnosed with Tourette syndrome when you were 45, but you developed tics at age 9. What was it like having symptoms and not knowing why?
I remember riding the school bus and my face started contorting and my lips and cheeks twisted around. I was horrified and covered my face with my hands. A girl sitting across from me asked what I was doing, and I immediately made up an excuse to cover it up. By the time I was a teenager, I was twitching all the time. In middle school and even college, students stood in front of me and mocked me by imitating my tics. I developed a really thick skin.
Did your attitude change after you received a diagnosis?
I started telling people, “You're going to see me tic because I have Tourette syndrome.” I realized that people fear the unknown and hate things they fear, so if I can take away the unknown and the fear, that might also take away the hate. I do a lot of public speaking, so I always tell the audience. That way they can focus on what I'm saying instead of trying to figure out what's going on with me.
You confirmed your citizenship in the Sault Ste. Marie tribe of Chippewa Indians in your early twenties. How did that come about?
I grew up as a middle-class White kid in Pennsylvania, but I always knew I was Native American on my mom's side. After doing genealogical research, my mother found that my great-great-grandmother was listed on the 1910 census as a full-blooded member of the tribe. She also found marriage licenses that proved we are direct descendants.
How has your heritage influenced your career choices?
After I graduated from law school and went into environmental law, I knew I wanted to combine that with my interest in tribal affairs. I currently work for the Department of the Interior. I'm the director of the Bureau of Trust Funds Administration, which manages the money generated from lands the government holds in trust for Native Americans.
You recently joined the board of the Tourette Association of America. What do you hope to accomplish?
I'm helping craft a road map for the organization (Tourette.org). And I hope to use my connections with the Native American community to help the association make inroads there and with other historically excluded populations. If one in 100 people have the disorder, there's no reason to think that statistic would be different in Indian communities.
Does having Tourette influence your leadership style?
I'm more empathetic. I can see beyond the wheelchair, hearing aid, or cane. I lead with kindness, understanding, and fairness. I also consider humility an integral part of leadership. If you think you're king of the world, Tourette will bring you back to earth pretty quickly.
