Last night I was able to catch an episode of Speechless. If you’re unfamiliar with the show, it’s about a young man who has cerebral palsy, his family, and their adventures. The episode revolved around the mother finding out that her son’s school has a Homecoming bonfire every year at a very inaccessible beach, and giving the school grief about it until they decide to cancel the event. This, of course, upsets everyone else and makes life at school tough on her son.
The show sometimes goes over the top portraying what special-needs families go through, but there are moments when it hits the nail on the head. This episode made me think about the differences between advocating for my son and bullying others so that I can achieve what I think is right. I have always wondered about how best to state my case, and where the distinction lies between reasonable and unreasonable accommodations by others. I want my son to have every opportunity every other child has, but I am just not sure where to draw the line between walking away or charging up the hill and planting a flag in the name of what is right.
When my son was looking for places to pursue his undergraduate degree, the college he wanted to go to was a tiny private school, founded only ten years before. When we met with them to discuss the possibility of his attending, our biggest concern was how they would be able to accommodate his needs. From an official, administrative standpoint, I think the school had very little idea what to expect, and was nervous. Here was the first student with a significant physical disability interested in joining them. Would they have to redesign whole buildings or implement special programs just for our son? What the school shared with us was the fact that they did not receive any federal funds, so they did not have to comply with the Americans with Disabilities Act. Of course, this is what every parent wants to hear. They arranged appointments with various administrators and teachers and each one started off with their proud statement of freedom from compliance. At that point, I was wondering what we should do. My first inclination was to get up and simply never return. My second was to start informing the school, a very conservative Christian institution, that accommodating my son's needs was not about compliance or any law, it was about doing what was right. Indeed in my mind, it was a Christian obligation. Each of these meetings, from my perspective, threw red flags in the air that said, "We don't want your son to come to our school." It wasn't until one of the final meetings of the day, when one of the professors said to us that they wanted Kyle there and would do what it took to help him be successful, that we could breathe a sigh of relief. The school’s guard had been up, and it took patience to realize that the school’s heart was in the right place, even if their lack of administrative ADA machinery made them anxious. Kyle did end up going to that school, experienced success, and remembers those years very fondly. As a parent, I wasn't looking for compliance with the law or even a formal list of accommodations. I only wanted someone who would reassure me that they would take care of my son and figure it out along the way. To hear that, to me, is so much better than some list of compliances from the legal department. But I am not sure I would have gotten that if I had come in like a bull in a china shop requiring them to produce a list of procedures they would follow. I understand that there are times I have to get grumpy with the bureaucracy to get them to do what is right. I wish, though, that I was more capable of grasping what response is appropriate in each different situation.