Today, Phil and I are meeting with Senate Republican Leader Christine Radogno to discuss Medicaid Reform and the Governor’s Rebalancing Initiative.
IT’S rare that our daily lives adhere to dramatic form. But as reported on Today.com/Moms (“Waiter hailed as hero after standing up for boy with Down syndrome”), among other places, a little morality play took shape a few days ago in a Houston restaurant.
According to the Today.com article, the Castillo family — Eric, Kim and their 5-year-old son, Milo, who has Down syndrome — were having dinner at Laurenzo’s Prime Rib when a family nearby asked to be seated elsewhere.
As the waiter, Michael Garcia, recounted to the NBC affiliate KPRC-TV in Houston: “I heard the man say, ‘Special needs children need to be special somewhere else.’ My personal feelings took over, and I told him, ‘I’m not going to be able to serve you, sir.’ ”
“ ‘How could you say that?’ ” Mr. Garcia said he asked the man before he left the restaurant. “ ‘How could you say that about a beautiful 5-year-old angel?’ ”
For many people, this will be a simple feel-good story. But as the father of an 11-year-old girl with Down syndrome, I found the story more complicated. Beyond its satisfying ending, you can learn a lot about the conflicted place of Down syndrome in the world. The casual insensitivity of the patron’s remark, while not always expressed this blatantly, is all too common. And whether you call Mr. Garcia a hero or not, he unquestionably did the right thing, and his kind of bravery makes an enormous difference in the lives of people with disabilities.
As Ms. Castillo pointed out, he put his job on the line. Even more inspiring, he knew the Castillo family, who are regulars at the restaurant, and he acted in the name of connection, denying the very separation — between “special” and “normal” — that the unidentified patron implied.
Ms. Castillo’s characterization of her son also stood out because it broke through the prescribed roles of the story. Her description is loving and positive, yet she emphasizes ordinary qualities as well as angelic ones. She said her son likes to give hugs, but is also occasionally “obnoxious which, like any other 5-year-old, he can be.”
She also noted that Milo has friends “both with and without Down syndrome.” That detail stayed with me, not only because it is true to my experience but also because it suggests how far we’ve come. The history of disability in our country is mostly tragic. During decades of routine institutionalization and sterilization, a shared preschool — let alone friendship, or being a valued regular customer at a Houston restaurant —was not on the table. If there were a slogan for those grim decades, “let them be special somewhere else” would sum things up pretty well.
Most of the progress for children with Down syndrome in the United States — their right to go to school, for instance — is recent and gained momentum, in part, from a recognition that “somewhere else” often meant an institutional horror no human being should ever have to experience. Geraldo Rivera’s 1972 hidden-camera exposé of the Willowbrook State School on Staten Island was instrumental in showing exactly how grim conditions could be. That exposé was one small part of a tidal change in which advocates for the disabled inspired by the civil rights movement, committed parents and others fought for the things that today’s parents take for granted. When our daughter Laura was born, my wife and I often wondered about the future. But we did not wonder whether she would be allowed to go to kindergarten.
Our advances, however, are still a work in progress. While it’s true that open bigotry is less common than it used to be, the absence of direct hostility is not the same as the absence of ignorance. The word “retard” is common in the schoolyard and on our screens: while our taboos about difference shift with incredible speed, slurs about intellectual disability often get a pass. From the movies “Tropic Thunder” to “The Hangover,” from Rahm Emanuel to Ann Coulter, “retard” still tends to be seen as edgy, not bigoted. Of course, the issues in question transcend labels: in the Houston restaurant, the word “special” was used as an insult, which only testifies to the resilience of prejudice. Any word can be repurposed for contempt.
What is it about intellectual disability that we find so difficult? Sometimes it seems our focus on “positive” qualities, like being “cute” or “happy” or “sweet,” is meant to compensate for disability. We’re a long way from seeing all human beings as part of a single continuum. We also, it has to be said, do a lot better with children than adults — perhaps because historically we imagine adults with Down syndrome as children. A child with Down syndrome may have a place at the table, but adults are a different matter. In housing and employment, their place is uncertain; the recent scandal in New York State with rampant, unchecked abuse in group homes should give pause to anyone who thinks that our American history with disability has come to a happy ending.
It’s moving to me that Milo Castillo’s story takes place in a restaurant, given the civil rights history of lunch counters and water fountains. What’s a more visceral expression of belonging than where we’re allowed to eat? Where else would manners and rights intersect? As presented in the television report, the opinion voiced by the unidentified patron — “be special somewhere else” — is seen as a shocking instance of rudeness. It is. But more significantly, it’s the sentiment that, when widespread, makes it possible for people to lose rights in the first place.
Dehumanizing practices depend on dehumanizing ideas. Instead of seeing the scene in the restaurant as a story with a heroic resolution, we might see it as a debate carried out in words and actions. Taking a kid with Down syndrome to a restaurant is a statement: he’s a family member first, and he belongs. Saying that the kid shouldn’t be there, as the patron did, is one response; Mr. Garcia’s principled refusal to provide service is yet another. That scene, tidy as it is, is only one part of a long American conversation about who does and doesn’t belong.
Beneath the human interest story, in other words, is a question about who counts as human. For parents of children with Down syndrome like me, every daily act is an answer. What I live for, though, is the day when the question doesn’t come up.