A few weeks ago, Marilyn and I were left in charge of two of our grandchildren, 8 and 10 years old. The morning was overcast and drizzly, eliminating their first choice of going to the college athletic fields to practice their lacrosse skills. A game of Monopoly seemed like a good idea until it became obvious that someone was going to win and that another someone who doesn’t handle defeat very well was going to lose. So off we went to the bowling alley. As we pulled into the sparsely occupied parking lot, the ever-observant 8-year-old noted that almost all of the vehicles were vans.
As we checked in to rent our shoes, the explanation for the vans became clear. It turns out that on Thursday mornings, the bowling alley is the place to be if you are an adult with a mental disability in Brunswick, Maine.
Our grandchildren had a wonderful hour of bowling surrounded by the cacophony created by the several dozen adults with whom we were sharing the lanes. As my wife and I revisited our morning adventure that evening, we recalled how comfortable our grandchildren had been in the midst of a scenario that had the chaotic feel of a Hieronymus Bosch painting.
The explanation for their lack of discomfort lies in the fact that they have grown up in a time and in a town in which the individuals with chromosomal anomalies and birth injury are accepted and cared for in the community and not hidden away in an institution. Our grandchildren’s parents were born as this sea change was just beginning. In fact, when my son was born, I was moonlighting as the night emergency physician at an institution that housed a few hundred of these individuals, many of whom had disabilities similar to those of the folks with whom we had shared the bowling alley. It closed a few years later. And, by the time my son and his sisters entered middle school, they had become accustomed to having classmates with mental disabilities.
The next step in the evolution came when the children who had been “mainstreamed” grew too old for high school and began transitioning to the handful of small group homes that sprang up around the community. It was not always a smooth process and would not have happened without tireless pressure from their parents. Even today, funding and staffing problems continue. Despite initial concerns that some neighborhoods might resist the introduction of a group home, acceptance has not been a problem.
It has almost been a win-win situation. Our citizens with mental disabilities have a far richer life than they would have had in even the most progressive institution. And the rest of us have benefited by learning tolerance from having our challenged family members close by.
However, the transition from institutionalization to community-based support has not been without its downside, particularly for a small town like Brunswick, Maine. Federal and state mandates now place on the shoulders of the school a significant financial burden for the special services required by children with mental disabilities. Small communities with only a few students with disabilities can’t benefit from the economies of scale that allow larger school systems to staff their programs more efficiently and provide more specialized services. Smaller school districts can sometimes pool their resources. But if this solution necessitates transporting the students with mental disabilities out of their own school district to a central location, it runs the risk of robbing the other students, like my grandchildren, of an enriching experience that I wouldn’t want to see them lose.
Dr. Wilkoff practiced primary care pediatrics in Brunswick, Maine, for nearly 40 years. He has authored several books on behavioral pediatrics including “How to Say No to Your Toddler.”
