As a society, we often forget those who are in the most dire need. We tend to wave off any thoughts of the developmentally disabled or those left behind due to severe mental illness. While their families never forget, most Americans would rather pretend such people don’t exist.
When people do stop and take a moment to consider such forgotten souls, it’s often out of pity with the mistaken, uncritical belief that “government” (in some non-specific, nebulous form) takes care of such people. How exactly that is done, or in what form, isn’t a detail most Americans spend any time thinking about.
Until it happens to them, or someone they love. Suddenly, the gaping holes in our healthcare system become readily, painstakingly apparent. And they feel helpless and overwhelmed in dealing with it all.
American Snake Pit by Dan Tomasulo is a poignant, needed reminder to America about the benefit of group homes for people who are living with serious mental illness and developmental disabilities. Told from his first-person perspective in managing and running such a home early in his career as a psychologist, it offers a convincing argument that most Americans don’t spend nearly enough time thinking about their less fortunate fellow citizens.
When forced to do so because of a desire to open a new group home or treatment center in their community, too many people cling to the principle of, “Hey, don’t get me wrong, I’m all for treatment of those people – just not in my backyard.” Apparently most Americans feel the best place to open a new group home or treatment center for those with mental illness is in Alaska. Or better yet, Russia.
Tomasulo paints a thoughtful and sometimes heartbreaking picture of people whose lives were changed (mostly) for the better when de-institutionalized and moved into the group home he oversaw called Walden House. This was a new and largely unexplored treatment frontier at the time, moving people who often had lived no place other than a state hospital into the community. In a group home, residents live together, overseen by trained staff. It can be a challenging experience for anyone who’s never lived “on their own” before, as all of these residents never had.
Not only do we get to meet the characters who played the starring role in this home, but we also develop a real understanding of the challenges each of them faced while trying to learn to live more independently for the first time in their adult lives. We learn about Jake’s amazing abilities with memory and numbers, and his challenge in simple conversation and tasks, such as naming the seasons of the year. We’re introduced to Albert’s “presents” to people he likes, and Sophia’s struggles to communicate so that others can understand what she needs, and what she wants.
In one passage, Dr. Dan (as he’s known to his wards), Taimi, a staffer, and Sophia head down to the local grocery store to pick up a few items. This is the first time Sophia has been out in the world for a very, very long time:
It began to drizzle, then turned into a light rain. We could see the house a block and a half away and Taimi and I lamented about not bringing umbrellas. Sophia stopped suddenly and put down her bag. In a second she had her blouse off and was naked from the waist up. As Taimi and I scrambled to stop her she continued trying to take off her pants. There was no grunt, no struggle.
“No, no, no, no!” yelled Taimi, quickly covering Sophia and pulling her blouse back on. I made a lame effort to shield the scene, but a few cars honked and someone whistled as they drove by. I let Taimi manage the physical contact, very much aware what this scene might look like with a man trying to subdue her. Plus, I had already learned my lesson on day one. I was useless other than being like one of the clowns at the rodeo, so I tried to cover and distract.
“What’s happening? What’s happening?” was all I could say. As Taimi frantically got the blouse back on, she convinced Sophia to pick up her bag.
“She’s been in the institution her whole life and thought it was shower time. She’s never felt the rain.”
It’s passages like this that demonstrate Tomasulo’s vulnerability and gifts as a storyteller. There’s no sense of sensationalizing this story. Instead, we glimpse his awkwardness as an amazing discovery unfolds before him; that of a human being enjoying the simple sensation of rain falling on them for the very first time in their lives. I tear up every time I read this passage.
We’re also introduced to the small-town characters who stand in the way of progress, including Mayor Billings (“a dead ringer for Danny DeVito in Taxi”) and his unfortunate brother-in-law, fire Chief Willy. In an overarching storyline about trying to pass a fire drill with this ragtag band of seeming societal misfits — one of whom would rather tear out the screeching fire alarm than to simply leave the premises — we discover the value of patience, repetitive learning, and in a final climactic scene, of people willing to put it all aside and pull together as a community in time of need.
The book is full of an amazing, colorful array of such stories, described in an honest voice that takes you back to Tomasulo’s early career. Told with the wisdom of time and experience, I never felt he was betraying the people he portrayed. Rather, I felt he shared these stories as one would of a beloved family member — with respect, empathy, and compassion.
Tomasulo’s engaging read also stands as a stark wake-up call that the stigma of mental illness is still very much alive and kicking. After all, I find myself still writing about how some people don’t want a treatment center or halfway house located in their community — nearly 30 years after the events of this book took place.
Tomasulo does a world of good reminding us that people with developmental disabilities and mental illness are not to be feared, but to be cared for and empathized with. They are our fellow citizens and travelers in life, and deserve the same respect and chances of opportunity we want for our own loved ones.
This book is a recommended read for anyone who wants to understand the kinds of extraordinary people who live in group homes, and a reminder to us all that everyone deserves a chance at living as independently as possible. Group homes provide such independence, deserving of our support within our own communities whenever possible.
American Snake Pit: Hope, Grit and Resilience in the Wake of Willowbrook
Daniel J. Tomasulo
Paperback, 290 pages