Looking Behind And Beyond The Screen

BY DR STEPHEN B. CORBIN

Albert Einstein observed that if one does the same thing over and over again, while expecting a different result, it is the definition of insanity. That seems like a man on the street type of observation that makes a lot of sense. There is a corollary to that observation, equally as true, but rarely stated – if you fail to take an action that could change or fix something, right a wrong, remove a barrier, or take advantage of an opportunity, then it will not happen on its own. One could characterize the first case as error of commission and the latter as error of omission. In either case, the wisdom being imparted is that actions and inactions have consequences. Management gurus routinely point out that failure to make a choice or commitment to action is by definition a decision. So, we must conclude that much of what transpires in our lives is either by our own hand or by the hand of others on our behalf.

It also is said that as we get older, our ability to recall things that happened recently dissipates, while curiously, our
ability to remember things, even small details, from long ago in our experience, actually sharpens. I have found this to be the case on a personal level, both in family, friends and myself. I have a memory from over 50 years ago that “haunts” me to this day. I remember the details because it played out like an act in a play and left me confused, both intellectually and emotionally. My family of five had crowded into a late model sedan to take a summer road trip across half the US from the East Coast. As it happens, Chicago, Illinois was just about half way, both in mileage and hours traveled, and we had relatives there who would gladly squeeze us into their modest home for one night before we headed on our way. I recall our car pulling up to their driveway late in the afternoon. I was hot, bored and ready to stretch my cramped legs. As I got out of the car and surveyed our relative’s house, yard, and neighbors’ houses, my eyes stopped and fixed.

Next door, looking through a screen door was a face, nearly pressed up against the screen. It was a barely visible face with no expression other than in the eyes and it was the face that could have been a teenage boy or young man. I could not determine that. As I walked around the car, a bit closer to the face, but without trying to appear that I was looking at the face, I stole a sidelong glance to see if the face had disappeared. It remained without apparent change. Quickly my mind started posing questions to itself. Who or what was that peering out through the screen? What was
he like and what was he doing? Why was he staring at us and what did he want?

As we gathered things into our hands from the car and headed toward the house, I asked in the general direction of my parents, “Who is that looking out the screen at us next door?” At that, we nearly stopped walking as my mother shot a concerned glance in my father’s direction. He looked at the screen door and then back at her without saying anything. Given those cues that something beyond the usual was up, I dared to repeat my question. My mother,
appearing flustered, said in a muted voice, “Shsssh. Don’t say anything. There is something wrong with him.” That
response was neither illuminating nor satisfactory, but it was clear. There was something about the boy behind the face that was so bad, scary, mysterious, or unknown that it could not be spoken about. Imagine J.K Rowling’s Lord Voldemort and that was the aura that was assigned to the face. I deigned carefully to ask my relatives about the face next door and they ventured a bit fuller of an explanation. The face was of a young man with a birth defect. He never
comes out of the house, never makes a sound, and no one ever sees him, other than the face behind the screen. That was to be the extent of the explanation that I was to carry over the ensuing decades. What happened to the boy behind the screen door who was not even named? Why could he not come out into the sunshine and play with other young people, with me? What kind of a life could he be living, even if he was “secure” in a nice house and  “protected”? I did not know enough to be judgmental about his confinement, but something deep inside me
questioned what it would be like to trade places with the boy and why it had to be that way. The screen was a very fragile physical thing that locked the boy and me away from each other, but culturally, it might as well have been an insurmountable prison wall.

THAT WAS THEN AND THIS IS NOW

In the early 1960s, this scene would not have been unusual. At the advent of important federal legislation and, ultimately, court cases that would enshrine the rights of people with disabilities and their families, there was little awareness of people with such disabilities in the community, precious little understanding, and a great deal of fear, suspicion, and lack of positive expectations for such individuals. Their lives were largely viewed as useless and efforts on their behalf to include them largely pointless. Many were physically behind walls to keep society and them away from each other. Thankfully, society has made much progress in understanding more about people with disabilities, passing laws that support their rights and opportunities and in having people with disabilities be included more in education, the workplace and the community. But, while progress has been made, there is still a long way to go before people with disabilities have equitable access to opportunities for productive lives, vocationally, socially
and culturally. Laws can be passed, but changing minds and hearts is a slower and more gradual process. Students with disabilities are now included in schools, although only 10 percent of students without disabilities have a student with disabilities in one of their classes. Adults with disabilities are in the workforce, but only at a fraction of the rate of adults without disabilities, and their work tends to be less than full time, at less than competitive pay and with dramatically less potential for job growth or even career development.

Outside of school and work, on the playgrounds, in clubs, at birthday parties and other youth gatherings, the cultural and psychological screen that has existed for so long, the screen that I recognized half a century ago, still exists to a great extent. One of the most frequently cited concerns of parents of children with developmental disabilities is that their children will not have friends and will be excluded from social situations. Middle school and high school aged youth in the US report having very little contact with fellow students with disabilities outside of school.

Thankfully, there have been pioneers who have worked hard to push back the boundaries and tear down the screens that have separated people with developmental disabilities and those without developmental disabilities from each other. Special Olympics International has been offering sports and sports related opportunities for people with intellectual disabilities since 1968. Today, more than 500,000 persons in the U.S. with intellectual disabilities, ranging from age three to 75+, participate and in every state and territory. Additionally, Special Olympics has programming that includes young people without intellectual disabilities – Unified Sports, Project UNIFY schools based programming, Camp Shriver, and Young Athletes. Special Olympics is, by far, the lead purveyor of sporting opportunities for people with intellectual disabilities in the US and, globally through its Red Ball Campaign for the First Unified Generation, is working to become the leading organization in inclusion.

NATIONAL INCLUSION PROJECT

On a smaller scale and a much newer effort is that of the National Inclusion Project with their Let’s ALL Play Program. Let’s ALL Play is an inclusive program model providing the foundation and framework for non-school programs to bring inclusive experiences to children in their communities. It was developed to empower organizations that serve children nationwide to move toward full inclusion and is a tested, successful and comprehensive model supported through training (modules and direct) and consulting. The American Camp Association has indicated that only 11 percent of its member programs self-report offering any inclusive camping experiences. Given the nearly three million school-age children with disabilities in the US, and the limited number
of inclusive opportunities for youth without disabilities to experience inclusive recreational camping, the need for the type of programs that are promoted by the National Inclusion Project is great.

Let’s ALL Play enables non-school time programs to include all children in their activities. At an inclusive recreational camp, everyone is in a new situation with a rapid pace within a structured environment, created in the context of inclusion best practices. Camp leaders are trained as to the purpose, critical elements, and effective approaches and problem solving in creating a truly inclusive environment. The goal is to make specific activities more inclusive, but also to change the organization itself to be more inclusive as a way of doing business. While these programs are providing fun, they are also providing serious guidance and mentoring to young people and modeling inclusion in a way that can be incorporated into their life views and actions. Children come away with increased self-esteem, social skills and with friendships that will continue. Since its founding in 2002 by entertainer Clay Aiken, who was a newly-minted special education teacher, and Diane Bubel, mother of a son with autism, the National Inclusion Project has collaborated in multiyear projects with 115 community organizations (e.g., Boys and Girls Clubs, YMCAs, Girl Scouts, parks and recreation departments, etc.) in 35 states. Each year, more than 15,000 children with and without disabilities participate in recreational camping programs ranging from one to four or
more weeks in uniquely inclusive settings. Along the way, thousands of families and recreation professionals and volunteers learn and apply inclusive techniques to the camping experience.

The National Inclusion Project has a vision that children with and without disabilities in numerous communities in all 50 states should have an opportunity to participate in an inclusive recreational program. It will take many partners, many volunteers, much training and significantly more resources for this vision to be realized. But, given the diverse experience and impressive results to date, it is a vision worth committing to.•

ABOUT THE AUTHOR:
Dr. Stephen B. Corbin is former Assistant Surgeon General of the US and recently completed a 15 year career as Sr. V.P with Special Olympics International. Currently, he serves as Senior Advisor to the National Inclusion Project, PO Box 110104, Research Triangle Park, North Carolina 27709; Tel. 919-314-5540.

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