Dave’s Desk@Ditch: Inclusion: One Family’s Journey

Dave Davis
Dave Davis

“Maybe it’s not just about your peers. Maybe it’s not even about you. Maybe it’s about your son, your niece, or nephew, your grandchild. What kind of world do you want them to grow up in? When they have a grandparent that has suffered a stroke or has Alzheimer’s and suddenly starts moving or talking in a different way – do you want them to think that it’s weird or freaky and they should be scared of that? When they have a cousin that’s been born with Down syndrome or Autism, do you want them to feel scared, distant, or uncertain on how to approach that cousin? Or do you want them to know that this is a natural part of life? What kind of a world do you want them to grow up in?”

These and many other thought-provoking questions were posited to a group of approximately 100 attendees at a TEDx presentation titled “Disabling Segregation,” given by filmmaker/photojournalist and disability advocate Dan Habib. 

The event was held several years ago in Manchester, and was sponsored by the University of New Hampshire’s Institute on Disability/UCED, where Habib is a staff member. The topic that he presented was on the importance of inclusion — something that he openly confesses he paid little or no attention to, until his son Samuel was born with cerebral palsy.

To begin his talk, Habib requested that everyone in the group think back to when they were in grade school, and to raise their hand while he asked a few questions, to see how many would respond in the affirmative.

Did anyone have a fellow student in their class who had a significant disability and learned or studied with them together? Did anyone have a best friend with a significant disability? Did they have a boyfriend or girlfriend with a significant disability? For each of these questions, no more than two or three hands went up. Lastly, he asked the group how many of them were scared, nervous, or fearful when they were a kid to talk with a fellow student who had a significant disability. The majority of hands were raised.

Throughout the talk, Habib shares with his audience many of the challenges and obstacles his family encountered as Samuel progressed in age; yet what I found to be most striking was not only how much his son gained from each of the inclusive settings and activities, but the social and emotional impact it had upon others who have and continue to share Samuel’s journey. Ultimately, the most important element was inclusion.

“We needed to make sure that Samuel felt belonged. Belonged in his neighborhood, in his community, and most importantly, in his local school,” said Habib.

One anecdote that was particularly eye-opening (and for which Habib included a photo in his slideshow as evidence), was when Samuel (an avid baseball fan), made the multi-state trek with some of his teammates to visit The Baseball Hall of Fame in Cooperstown, NY. As one might expect, the children were blown away by all that “The Hall” had to offer, but problems arose once they drove downtown, wanting to further explore the area.

As the small group of excited boys (Samuel in his electric wheelchair, and the others by his side), made their way along the sidewalk, they encountered something rather prohibitive. Each of the stores that they wanted to investigate and possibly purchase items from had at least a 3 to 6 inch stoop at its entrance; no ramps.

Unbeknownst to Habib, the boys had made a pact that none of them would patronize an establishment if Samuel was unable to enter on his own, without their assistance. Admittedly, it put a major damper on their excursion, but they didn’t allow that part of the experience to end there.

When they arrived back in New Hampshire, they chose to write letters – and lots of them; particularly to each of the village’s newspapers and one to the Cooperstown Chamber of Commerce, sharing their frustration about the inability to gain access to many retailers and other local businesses. Not surprisingly, their letters were published and the Chamber reached out to them seeking input (Habib doesn’t share whether action was eventually taken to remedy the situation for future patrons), but most of all, he stated, “They were motivated!”

He went on to conclude: “What I’ve come to understand is that you can’t teach this, you have to live it. You have to experience it; you need to be there all the time, every day, around you in the community, in schools alongside people with this type of adversity. This is life; this is part our world and has to be seen as a normal part of our world.”

Normal indeed, as Habib has introduced countless viewers to the world of inclusive education and other related subjects as the creator of several documentary films: “Including Samuel,” “Who Cares About Kelsey?” (Nominated for an Emmy Award in 2013), and “Mr. Connolly Has ALS.” All three works have appeared or been featured in numerous film festivals, universities, independent theaters, national conferences, and broadcast on PBS.

Habib’s latest project, “Intelligent Lives,” according to the film’s website, “is a catalyst to transform the label of intellectual disability from a life sentence of isolation into a life of possibility for the most systematically segregated people in America.”

The filmmaker noted in a recent interview with The Boston Globe that only 17 percent of students with intellectual disabilities are educated in an inclusive classroom, and of the nearly 6.5 million Americans classified with some kind of intellectual disability, only 15 percent are employed.

Academy Award winning actor Chris Cooper narrates the film, as it not only delves into the history of disability in this country, but also follows the lives of three adults with intellectual disabilities, and the various challenges and achievements each has faced along the way.

The film also gave Cooper and his wife Marianne a platform to share their son Jesse’s story. He was also diagnosed with cerebral palsy before passing away in 2005.

“Intelligent Lives” will be screened locally at Long Island University Post on Thursday, Sept. 20 at 11:30 a.m. Following the film, Habib will partake in a Q&A discussion. I hope to see you there!

Dave Davis

Dave Davis teaches preschool for the Head Start program at the Children’s Museum of the East End in Bridgehampton. Two of his pieces, “Always Be the Water” and “All Things Considered,” appear in the 2016 anthology “On Montauk: A Literary Celebration.”

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