"They're afraid of offending passengers who expect a snack of nuts... Why aren't they afraid of us?"
I wrote that yesterday about an airline that refused to accommodate the family of a child with nut allergies. And indeed, if it was only every family of every child with a food allergy that boycotted American Airlines, I think the carrier might feel some pain. But we're a bigger community than that, as the statistics I mentioned in yesterday's post indicate. If companies understood that they were losing the business of every family of every child with any kind of special needs when they showed disrespect to any child with any disability, surely they'd be more motivated to put thoughtful policies in place. Why, with the number of kids with disabilities growing so dramatically, has no one bothered to do the math?
Part of the problem, I think, is that we as parents of children with special needs are fragmented, focusing powerfully (as we must) on our kids' specific issues. "Special needs" is a ridiculously broad term, and parents of kids with chronic health issues don't necessarily consider themselves to be of a community with families of children with developmental issues, or mental-health issues, or intellectual disabilities. I think of the situation where a scout troop for kids with physical disabilities threw out a child with autism. We are often at cross-purposes, our needs conflicting, our feelings hurt by perceived slights and judgments. We allow our differences to drown out our similarities, and our children lose.
But what if we could find that common ground? And what if we could get, say, the parents of children with autism to boycott the airlines that make it clear they'd rather a child die than stop serving nuts? And what if we could get, say, the parents of children with food allergies to boycott the restaurant that would rather satisfy a rude patron than understand the behavior of a child with autism? What if we could make airlines and restaurants and churches and community groups understand that if you exclude one of us, you exclude us all? Is there a common thread we can all cling to?
I think it's respect. We expect respect for children and adults with special needs and their families. Even if we cannot be accommodated every time, we expect to have our concerns taken seriously. If we can say that with one voice, we can have some clout. And if we show that same respect to one another, we can model compassionate behavior to a world that seems sorely lacking in examples.
I've written up a manifesto called "We Expect Respect," and I invite you to read it and, if you agree, add your name and message using the Readers Respond link at the end of it. Can we roar together, do you think? We'd make a fearsome noise.