High Expectations

“To the best AmeriCorps VISTA the Ann Arbor CIL has ever had.” That was the expectation-filled salutation pinned to a large bouquet of flowers set on the desk that would be mine as I began my term of service almost two years ago at the Ann Arbor Center for Independent Living (AACIL). I read those words with an equal helping of hope and dread. On one hand, I had hope that I would make a difference; on the other hand, the dread that I would not live up to the aforementioned best VISTA ever. With one bouquet of flowers, I found myself stuck between the two extremes that I would ping-pong between during my time as a VISTA.

My personal game of psychological table tennis had little to do with the fact that I have a disability. I was born with a rare genetic illness called Friedreich’s Ataxia (and it seems it’s not enough to have a life-threatening illness – it also takes a dozen years to learn to spell!). The disease remained hidden, slowly peeking out as I grew, searching out ways to trip me up, slow me down and make me different. My older brother, Chris, had been diagnosed with FA (so much simpler, right?!) when he was 12. I was only five at the time, and didn’t make the fatal connection between my growing limitations and the same ones that had led him to a wheelchair at 16. Long story short, I’ve used a wheelchair full-time now for 11 years. But, after so much time, I was about to learn how “normal” I could be, and that the ups and downs, goods and bads, or pings and pongs of working in non-profit were applied equally, disability or no.

Beginning my service at the Ann Arbor CIL was an exercise in extreme humility. My encounters with others with visible disabilities (because – make no mistake – disabilities are everywhere, but there are many one can hide) was limited. Several of my coworkers are in chairs for a variety of different reasons. I was no longer “special” in my abnormality. At the CIL, disability was the norm and expectations of me and my abilities were not automatically assumed to be less (commence the first serve: Ping, Pong, Ping…). My coworkers—I think it’s safe to say, “My friends”— have ushered me into a whole new world of adaptive sports, advocacy, and understanding. Not only has my job resume exploded in the Skills and Accomplishments sections (I’m on to two pages!) because of the CIL, but the wisdom and knowledge of resources that I could add to my “life” resume could fill a book. There was one, now infamous, occurrence with a male coworker who said he’d “help me in the shower.” When coworkers surrounding our exchange heard this and some jaws dropped, he quickly reddened into a virtual turnip and loudly declared, “I meant with advice on adaptive devices!”

My first term as a VISTA brought me into the world of volunteer coordination. While this sounded like I’d be helping people to help people, I misjudged, as happens very often in my life. Upon starting at the CIL in November 2009, the volunteers had not been “coordinated” for several years in anything resembling a streamlined structure. With the help of supervisors and colleagues who had worked a lot with the volunteers in the past, I tried to develop and implement programs that would structure the current volunteers, while adding room to bring fresh ones into the fray. Several of the programs took flight and continue to be operational today, which has been exciting for me to see.

My second term of service brought with it new responsibilities that have both challenged me and elevated my spirit with each peel of laughter, cooking project gone wrong, and silly picture taken. I was appointed to assist in the Youth Department, which incorporated fun and imagination into the 9 to 5 service structure. This youth program stood proudly apart from the rest. Serving those age 14-26, the focus was on kids in special education programs in the county, who could stay in the educational system until the age of 26, at which point they would need to transition into the community. The program’s aim--while always remaining inclusive--was to prepare these youth for that time when the daily structure and support of special education was gone, so they might have the social and independent living skills to enter into community in a way that would foster continual growth.

And so, I teamed up with Youth Services Coordinator (and VISTA Alum!), Anna Dubiber-Gossage, and embarked on creating ever-stronger programs and bonds with each of our youth that has added a new vibrancy to the fabric of my life. The Girl Talk six-week course was my first experience with teaching independent living skills. Anna gave me a lot of creative freedom in letting me design classes titled Dress for Success, Homemaking Magic, and Love and Disabilities.

The buzzer will sound on my time at the Ann Arbor CIL on November, 21, 2011. I hope I have made an impact. Scratch that. I know I have made an impact. The moment a youth participant, not much younger than me in physical age, gave me a shy smile and announced, “I sure will miss you, Robin,” I knew. And as for my game of ping-pong? Well, the CIL has reminded me that in life’s game, it is a win to even come out in a tie of hits and misses, as long as you gave it your all. And, Mom & Dad, thanks for the flowers.