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Outside the Box: Why We Need To Be Better at Showing More Shades of Normal

We need to go to the source - individuals and families who have what our world calls disabilities. We can take the time to understand their experiences and ask them how they want to be represented in the media. That is because one depiction by one person is just that - one experience.
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How do we communicate to children the sense of normalcy? As parents and also as members of the global community, how do we acknowledge and model inclusion of those who do not fit into neatly labeled boxes?

Perhaps the answer is to have new models of "normal" surround us in our culture. With more than 56.7 million people in this country living with a disability, according to the most recent U.S. Census Bureau data, this is a large population of one in five Americans who deserve consideration beyond swift definitions of normalcy.

The price of exclusion exceeds the cost of inclusion.

Recently a movement in this country is emerging to highlight the work of artists with disabilities and to shift stereotypes.

One group out of Indiana recently was recognized for their work with artists with disabilities. Director Aaron Sawyer's R+J: The Vineyard is a verbal and signed adaptation of William Shakespeare's Romeo and Juliet that recently played at Red Theater Chicago. Both sign and word are alongside one another on stage in this important model of inclusion.

Disabilities can also be invisible to our society and are represented in innovative and thought provoking exhibits.

Certainly many other individuals who have what our world classifies as disabilities test these assumptions. Individuals with disabilities can be better represented in theater and the arts, and in theater productions around the country from Salt Lake City to San Francisco, they are. Other efforts include an art exhibit in Columbus, Ohio.

In other media, storyteller and illustrator Rosie King challenges stereotypes in her TED talk about her own experience as a young woman with autism. She describes that people tend to "check box descriptions to diagnose autism." But, King states, there is a wide "variation" of what autism means for different people. She also asserts that stereotypes are often wrong.

Check the box

As a doctor, I have been trained to understand different categories of disease so I can prescribe the appropriate treatment. The goal is cure. As a developmental pediatrician, I specialize the diagnosis and ongoing care of children with developmental disabilities, including autism, communication disorders, intellectual disabilities, ADHD, and learning disorders.

The world of child development does not neatly fit into the medical model. I do not cure or "fix" anything. I listen, observe, and try to understand how to support families who are doing whatever they can to help their children be successful in our world.

Children did not "read the book" about what specific category of developmental disability best describes them. Sometimes, categories do not exist to describe the unique learning styles of children.

To be sure, we still have to live in a world with categories, and they can be helpful - even life-saving. For example, if a 65-year-old man calls his doctor and says he is having chest pain, understanding the life-threatening category of heart attack could mean saving his life.

In addition, I cannot merely describe children in terms of their strengths and challenges and expect families, therapists, educators, and insurance companies to understand what I mean or to cover the therapies and services I prescribe. But we need to be careful about the categories so they do not limit us or put us into little boxes that imprison us.

Media's role

The media and popular culture play a powerful role in how we understand developmental disabilities - in positive and thought-provoking ways and also in less positive ways.

Television and movies can perpetuate stereotypes as individuals with autism are often portrayed with what was previously described as Asperger syndrome. Others do not incorporate our current scientific and medical understanding. Neither depiction fully captures the multiple dimensions of individuals with autism.

The children's public television show that has aired since 1969, Sesame Street, recently introduced a new character, Julia, who is a little girl with autism. Sesame Street has been applauded as well as criticized for their characterization of autism. For example, Julia is a girl, and most individuals with autism are boys.

The purpose is to increase awareness and to reduce stigma around autism-- for both boys and girls-- and it is important first step. It will be wonderful when Julia can be a part of the regular Sesame Street show, learning and playing with other characters and just being herself.

In another TED talk that has reached nearly 1 million views, author Faith Jegede eloquently sums up her experiences with her brothers with autism. She starts by saying "Please don't tell me I'm normal." She goes on to describe what she loves about her brothers. Through her experiences, she describes how normality limits us. In particular, she says, "Normality overlooks the beauty that differences give us." She changes our perspectives of differences.

The world is filled with categories and labels, but we need to be mindful of how we use them. It is unrealistic to completely eliminate them. However, we do need to understand and to question how they are being used. Categories can help us understand a glimpse of one person's perspective, but we cannot use these labels to limit and to completely define an individual.

We need to go to the source - individuals and families who have what our world calls disabilities. We can take the time to understand their experiences and ask them how they want to be represented in the media. That is because one depiction by one person is just that - one experience.