Precarious Indifference

The disability community outrage machine sputtered to life again last week. As is so often the case, it was entirely justified, another one of those stories that disheartens those of us who are charged with the care and protection of loved ones with disabilities. I wish there weren’t so many of these stories, but at this point, I’d might as well wish for a pony, too.

The story comes to us from CBS affiliate WREG-TV in Memphis. About this time last year, nineteen year-old Hannah Cohen was returning home with her mother to Chattanooga after the latest of repeated treatments for a brain tumor at St. Jude Children’s Hospital in Memphis. Hannah is partially deaf, blind in one eye, suffers from some paralysis and is very easily confused. According to her mother, Hannah also deals with low self-esteem, difficulty with articulation of speech, and facial disfigurement due to nerve damage. Since the age of two, Hannah has made this trip for treatment without incident. But not this time.

Something (possibly sequins adorning a shirt Hannah was wearing) set off the metal detector at the airport security gate, and the Transportation Security Administration agents reacted swiftly to lead her away for additional screening. Her mother notified the TSA agents of her daughter’s disability and her confusion and attempted to help facilitate the procedure, but the agents (and then police) kept her away from her daughter. Hannah became confused. She panicked and tried to get away, and law enforcement responded by throwing her down, smashing her head against the floor. Her mother quickly snapped photos to document the situation; you can see the panic in Hannah’s eyes, and you can see the blood. Lots of blood.

Hannah was arrested and booked into jail. The charges were later dropped, because of course. The family is now suing the Memphis police, airport police and of course the TSA. That’s why the story is in the news now. Why it wasn’t before is anybody’s guess. For their part, the TSA is simply claiming that the story as told by the family isn’t accurate. The story that hits home is the one told not by her family, however, but rather the one told by the photo of Hannah, her face bloody and with terror in her eyes.

This news story is resonating with the disability community, understandably. I think it’s especially hitting home with parents of older teens and young adults, particularly those whose disabilities are harder to identify at first glance. It is very easy for us to imagine our kids in situations where there’s more at stake than societal lack of understanding. We’ve seen stories of young adults with autism, Down syndrome and other intellectual disabilities who have been mistreated, hurt by and even killed by law enforcement because officers refused to listen to the explanations of family and caregivers. We know that there are deep problems in community policing in this country, and while the impact of those issues on the disability community aren’t covered in the media with nearly as much attention as cases rooted in racism and class divides, they concern us deeply. There’s been a lot of outreach to law enforcement, and many departments have instituted training to assist their officers in interacting with members of the intellectual disability community. But there’s a very long way to go.

In the case of Hannah Cohen, the TSA says that her parents should have made her aware of their procedures. Such a statement rests on the assumption that for people with disabilities like Hannah’s, adjusting to frightening and unfamiliar situations without parental or family supports is a simple matter. The truth is, it’s anything but simple. It is in fact one of the most daunting challenges they face when they go into the world. What happens when things go amiss, and when they are suddenly being handled, often roughly and without empathy, by uniformed authority? What happens when they find themselves forcibly separated from the only people they can consistently trust to make things make sense?

When I read this story for the first time last week, I tried to imagine how Schuyler would react in a similar situation. It wasn’t a purely academic exercise for me. Schuyler and I travelled a great deal when she was younger as we appeared at various speaking engagements around the country, and on many occasions, TSA agents were skeptical when she tried to answer their questions (“What’s your name? Is this your father you’re traveling with?”) using her speech device and later her iPad. I appreciate that they wanted to make sure I wasn’t a human trafficker, of course. But their narrow and suspicious worldview had no apparent room for Schuyler’s lack of verbal communication. And they had no patience for her inability to understand the situation. Most of all, they were absolutely aggressive in their refusal to listen to me or allow me to try to help. This was our normal when we travelled alone together.

How would Schuyler have reacted in Hannah’s situation? I can’t say. I imagine she would respond differently, probably shutting down in frustration rather than trying to run. But how can I be sure? How can any of us know? This is why parents of young adults like Hannah Cohen or Schuyler or countless other responded to this story with such visceral fear and anger last week. We don’t know how such an encounter would go, but we’ve been doing this long enough to presume that “happily ever after” isn’t where the smart money goes.

I’m not sure what the answer is. Some suggest that people with intellectual disabilities should carry explanatory cards with them when they travel. This idea has gotten a great deal of support in various government circles, and it might not even be a bad idea, although I have to be honest. The thought of Schuyler carrying something around explaining that she has an intellectual disability feels like it’s loaded with potential for discrimination, stigma and degradation. I’m not even sure how I’d sell her on that plan without re-enforcing a persistent narrative, one that says she doesn’t belong, and that the world will never be inclusive for people like her.

If it worked, if it kept her safe, perhaps it would be worth the risk of her feeling demoralized and “less than”. But would it? Would law enforcement and society in general respond to such a thing? Why would a card make a difference when a pleading parent did not? I can’t answer that. I’m not sure anyone can.

We’re left with the same conclusion that members of the disability community have come back to time and time again. The solution requires a societal sea change. It requires more than laws and policies encouraging inclusion. It requires a much deeper understanding from society and particularly law enforcement, one where people like Hannah Cohen, and Schuyler, and perhaps your or your own children, too, are valued as human beings.

That doesn’t mean treating them the same as everyone else. Quite to the contrary, it means understanding their differences and accommodating them, particularly when it is those differences that are creating difficulties. We don’t need safe spaces for our kids. We need the world to be a safe space. We need their challenges to become everyone’s business, and their safety to become a part of an inclusive world.

If it feels like I’ve said all this before, I have, many many times. And yet our kids are still being misunderstood, and dismissed. And they’re being hurt. We want that to be shocking when it happens. We need it to become rare, and outrageous to the whole world.