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."

The Art of Disability

“Disability is not a ‘brave struggle’ or ‘courage in the face of adversity’. Disability is an art. It’s an ingenious way to live.”
Neil Marcus – a poet, humorist, writer, actor, and adventurer who is “creatively endowed with disability”

This quote was shared at a presentation I attended this past summer. It immediately brought up memories of a play that has always bothered me since I first saw it when Erin was in high school - "The Boys Next Door" by Tom Griffin. The story is about four men who live together and have cognitive and developmental disabilities. It does not paint a pretty picture of living with disabilities.

At a pivotal point in the play, one of the men shares a very sad monologue. “I stand before you, a middle-aged man in an uncomfortable suit, a man whose capacity for rational thought is somewhere between a five-year-old and an oyster. (Pause) I am retarded. I am damaged. I am sick inside from so many years of confusion, utter and profound confusion. I am mystified by faucets and radios and elevators and newspapers and popular songs. I cannot always remember the names of my parents. But I will not go away. And I will not wither because the cage is too small. I am here to remind the species of the species. I am Lucien Percival Smith. And without me, without my shattered crippled brain, you will never again be frightened by what you might have become. Or indeed by what your future might make you.”

Unfortunately this description of disability is the perception of many people, not just the playwright. To counter-act this perception, we go overboard trying to show the "super stars" with disabilities. We talk about those extraordinary individuals who have overcome their deficiencies; have worked hard to become more "normal."

Neil's quote is about valuing all people with disabilities; looking at differences and not perceived deficiencies; discovering and celebrating the gifts in each of us.

Visit Candee Basford's web page

Please consider going to Candee Basford's web page at http://www.candeebasford.com/ . While you are there make sure you check out her blog. As she says on her web page: "Feel free to browse the art, writing and ideas found here...."

Jonathan Mooney Coming Soon to Otterbein College

We hope you can join us for the 3nd annual event for the "Erin McKenzie Virtual Welcoming Space" when Jonathan Mooney will be presenting:

THE SHORT BUS: A JOURNEY BEYOND NORMAL

Sunday April 13, 2008
2:00 PM

Riley Auditorium

Battelle Fine Arts Center

Otterbein College

Westerville, OH

Jonathan has written two books, Learning Outside the Lines and The Short Bus: A Journey Beyond Normal.

"In the summer of 2002, Jonathan bought an old short school bus—the kind that transports students in many school districts to special education classes—and converted it into an RV. For four months, he drove 35,000 miles through 45 states to explore disability culture in America. What surprised him was that this journey led him straight to the myth of normalcy.

Jonathan, like many labeled abnormal, spent his life chasing that myth before his trip. But on the Short Bus, he learned that people with disabilities make up a nation-wide movement that actively resists the constraint of normalcy for all of us."

Two of the people that Jonathan interviewed for his book were Katie and Candee Basford. See a short video on Jonathan's web site under documentary and hear a little of their story. http://www.jonathanmooney.com/