Friday, February 19, 2016

Why Kids With Food Allergies Are Ground Zero for Inclusion

When I rant about the public's lack of appreciation of kids with special needs, I often mention children with food allergies, even though I don't have a kid with food allergies myself, and I suspect that many parents who do would not necessarily place their child under the "special needs" umbrella. I'm not just trying to broaden the special-needs definition so that more people will be roped in to click on my stuff. The main reason I tend to include kids with food allergies into special-needs debates is because they seem to me to be kind of an accommodation baseline. If we as a society can't include these kids, how are we ever going to be able to include kids with much more significant and program-altering challenges?

I'm a fan of school inclusion, truly I am, but it's hard to deny that accommodating kids with special needs in a way that is actively inclusive and not passively warehousing requires a lot of hard work, training, money (at least in the short term), and changing of the status quo. Here are some of the things a school might have to do to fully include a child with, say, intellectual or developmental disabilities:
  • Train staff in co-teaching and ensure that regular and special-ed teachers are working effectively together.
  • Make all areas of a school building fully accessible.
  • Hire paraprofessionals who are trained to facilitate an inclusion program.
  • Develop differentiated instruction plans that work for each child's level, from those working behind grade level to those working beyond it
  • Reconfigure classrooms so they have a mix of students at all learning levels.
  • Hire teachers trained in adaptive physical education to include students in gym class.
  • Perform functional behavioral assessments of students who require behavioral support and implement behavior intervention plans that will be constantly adjusted as needed.
  • Work with therapists to incorporate their sessions into regular classroom time so students do not need to be pulled out.
Meanwhile, this is what a school might have to do to fully include a child with a life-threatening food allergy:
  • Refrain from deliberately making the child sick or dead.
Seems like that should be doable, right? It mostly affects lunch, snack time, and parties, all of which are incidental to the educational program. It might involve some strategizing, some awareness-raising, some learning how and why to use an Epipen, some spine on the part of the administration. But as school accommodations go, this seems relatively modest and limited in scope.

And yet, there is unbelievable resistance to even the small amount of effort it takes to include kids who are in all other ways indistinguishable from the general student body. You won't have to look very far on the Internet to find people who think that kids who might die if they come in contact with a PB&J should be homeschooled. But even among those who are not that exclusionary, you will find many moms and dads and teachers who, in this age of BULLYING IS BAD!, still think it's an acceptable idea to send kids out of the lunchroom or out of the party room or away at snack time, or to give everybody else a treat but not them, or to have them bring their own treat while others enjoy the pretty pretty cupcakes. Because, children, it's not okay to make someone feel different or unwanted, unless that someone might keep you from eating a peanut-butter cup at snack time, and then all bets are off.

Now, I know there are some parents of kids with special needs who have a legitimate beef with banning certain foods from school, because their children have issues of their own that limit what they are willing to eat. That is a rights vs. rights issue that is meaningful and difficult and requires addressing on a case-by-case basis. Please understand that I am not ranting at y'all here.

What I am ranting at is the idea that "the rights of the many vs. the rights of the few" applies even in situations where the rights on either side of the equation are of nowhere near the same magnitude. The question of, say, whose needs get met in the allocation of school funding is one where the many vs. the few has some significance. But honestly: The right to eat whatever you want for lunch and the right to a public education are not equal things. The right to have a particular treat at a class party and the right of a child to feel safe and welcome in her own classroom are not equal things. (And don't get me started on the right to eat one out of a million possible snacks while airborne and the right to travel freely. Stop pretending those are within a million air miles of each other.)

If we can't make these distinctions in an area in which they fairly straightforward, how will we ever make them in areas where they're hugely, heartbreakingly complicated? If parents dig in about putting something different in the lunchbox, how will they ever agree to change the entire structure of their children's education to accommodate a new vision of schooling? If administrators can't develop a policy to keep classroom parties of all things from becoming either lethal or exclusionary, how will they ever manage the personnel and parent protests over true and complicated and expensive and disruptive inclusion?

There seems to be a school of thought that food allergies are made up, and to change everything just to suit a particular kid's finickiness is recklessly indulgent. But what would you call saying to your child, "Your classmate probably won't really die. It's more important that you get to eat exactly what you want"? There's such an amazing opportunity here to practice what we preach about bullying, to mean it when we say it's not okay to make people feel different or unwanted, to introduce the idea of sacrificing a little of your own comfort for the good of another. Aren't those things we still want kids to learn? They're sure as heck things that will need to be in place for inclusion to work. As inclusion proponents, we'd like to believe that having all different types of learner in a classroom is good for everyone, that there are intangibles that typical kids gain from being with their differently abled peers. The apparent inability to find value in the fairly easy accommodation of food allergies does not fill me with confidence that anybody's going to be feelin' it with kids whose needs are more complex.

At this point, I am mercifully out of the school inclusion business. My kids made it through their years of FAPE mostly failed by inclusion. I had the opportunity to observe firsthand the many, many ways inclusion can be done in name only, by people who don't believe in it, to mollify the whining parents on all sides of the issue. Now, when I hear true believers talking like all we have to do is join hands and wish with all our might and shinyhappyinclusion will be the law of all the land, I can't help but be grinchy.

If people won't even change their ways to keep kids alive at school, why do we think they'll inconvenience themselves to give everybody a shot at something so abstract as an education?

1 comment:

Michael Chinni said...

Of course it's too much trouble to make allowances for kids with food allergies. Schools can't even make allowances for kids who could have a deadly allergy / asthma attack or for their classmates who choose to try & save them but violate school policy in the process ! (sarcasm on) It's better to follow the letter of the policies than to save a kids life (sarcasm off)(see http://www.thisistrue.com/blog-gasping_for_breath_still.html for *several* story examples on the subject). I think it's all part of the zero-tolerance / everyone-must-be-treated-the-same nonsense. And it's about damn time that nonsense STOPPED !