Now that Schuyler is on Facebook, I occasionally get a very public peek at what’s going on in her head, in ways that I don’t necessarily get otherwise. Welcome to teen parenting, I guess. A few days ago, she posted about school starting back up and said, “I think I am bummed about school.” After a few people responded, she added a comment. “School is hard for me.”
She tries so hard, and I think she’s mostly keeping her head above water. She passed all her exams and classes last semester, after all. I’ve never been more proud of her than I am now after watching her conquer her first semester of high school. Not just for the academics, which have been challenging, but also for all the social pieces, many of which she navigates without truly understanding them. I see how her classmates treat her, and honestly, she seems to be surrounded by people who have genuine affection for her. But that hasn’t translated into friendships like I’d hoped it might. She hasn’t found her tribe just yet.
Usually I try to have a big unifying advocacy theme to write about here. There are times like today, however, when honestly all I have are the unfocused meanderings of the father of a girl who needs a little extra help, in a world that seems less interested than ever in budging. There are aspects of this parenting life that drain my energy like vampires, but this might be the worst.
I should stop reading the news, I suspect. Then I won’t hear about cops who get recorded making fun of kids with disabilities. I won’t have to read the comments about entitled special needs parents following the story of a three-year-old stroke victim with cerebral palsy who was treated insensitively by a United Airlines flight attendant. And I won’t have to read an interview with the the new president of Schuyler’s school district board of trustees, in which she goes on at length about her priorities for the district without mentioning special education even once.
Not every story is black and white. The family traveling on the United flight probably should have been better prepared, for instance. The rules are the rules, I know. But when I see public discourse on how disability rights advocates are gaming the system and how it’s not fair for us to expect to be treated with extra empathy or flexibility, I feel my shoulders slump.
Fairness. What a word to use to our families. What a social narrative for us to adhere to.
There’s a parallel narrative that we all see almost constantly, the one that seems positive enough. I’ve written about this narrative before. It’s the one that says special needs kids are given to special parents, and that we have skills and abilities far beyond those of other parents. It sounds nice enough, but it’s a trick, an escape clause for society, a “Not My Problem” card. It says we’re superheroes, and who ever gives a damn about the trials and limitations of superheroes? Superman can take care of his bad self.
Schuyler attends a school district where academic performance is highly valued and high test scores are a hot commodity. There’s a danger in schools like these where students who don’t or can’t perform at a high academic level become a “problem”, in terms of scores and resources and teacher skills. It’s a short walk from there to questioning why those resources should be spent on students whose contributions to the system are… unclear, perhaps.
It’s an attitude that extends beyond school. At some point, we have to decide how much we value a concept of fairness in which everyone gets the same rules, and it’s up to them to utilize their equal slice of the pie. It might be time to ask ourselves if fairness could be thought of in terms of equal opportunity, and how that starting place could be different, even flexible, for people with disabilities and the families who give so much to help the ones they love.
I’d like to suggest a new attitude as we begin a new year. There’s a lot of concern out there about fairness and balance and making sure no one gets anything they’re not entitled to. I think we’ve got that covered. Perhaps it’s time for a little imbalance. Maybe, just maybe, the world won’t spin off its axis if we worry just a little more about those families for whom the idea of fairness has always been something of a cruel joke. Not charity, but just a little empathy. Perhaps a pinch more humanity than we’ve been accustomed to tossing into the mix.
Schuyler is challenged by the world in ways that are decidedly unfair. But it’s an unfairness handed down by God or Fate or Just The Way Things Are, and as a society, we don’t have a very good track record of dealing with that kind of unfairness. We can try harder to do so. We can do better.
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