Sunday, February 21, 2010

What is a "normal" life?

I confess that I never watch Family Guy, never saw the entire episode recently in the news, and do not know how the story of a young woman with Down syndrome going out with a boy who does not have it was set up or even if the words Down syndrome were used in the episode. All that I have seen is the now famous line about the governor of Alaska. From that clip, I must admit I wondered what the problem was around Down syndrome. I kept searching to find more about that. I found this quote from the actress who voiced the character, Andrea Fay Friedman, who does have Down syndrome. "My parents raised me to have a sense of humor and to live a normal life. My mother did not carry me around under her arm like a loaf of French bread the way former Governor Palin carries her son Trig around looking for sympathy and votes." No matter what your political thinking, her perspective is interesting.

I found myself thinking more about Andrea's comment on being raised "to live a normal life." What is a "normal" life? Jonathan Mooney in his book, The Short Bus, A Journey Beyond Normal, explores that. The question is crystallized in Chapter 12, "Katie's Book of Life." View a short documentary at his web site, http://www.jonathanmooney.com/. The last four minutes feature a conversation with Katie and Candee Basford on this topic. Candee talks about how the concept of "normal" gets in the way of valuing what diverse gifts each human being offers and how that can limit a person's opportunity to have an ordinary life.

In a letter sent to thank the Basford family for their participation, Jonathan says, "One of the deepest scars for me from my experience in special education was the feeling that I had to be something other than what I was-that I had to be exceptional to be valued at all. I learned from my day with you how wrong that was-how our lives are intrinsically linked."

When I share my stories of Erin, I try to convey that Erin was not an extra-ordinary person with a disability. What was extra-ordinary was that she had the opportunity to have an ordinary life. More importantly, those people that got to know her had the opportunity to discover what Jonathan realized and wrote to Katie and Candee. "You gave me the gift of seeing how when we are together, we are so much more than when we are alone."

1 comment:

starrlife said...

Sorry for the delay in comment since I read this the day it came out. This is a beautiful and wise post. That's all I want for my daughter- not to be marginalized and to be accepted as worthy just the way she is. Not easy in an academic, measuring world.