A curious thing happened to me recently. At a meeting of disability parents and professionals, I began chatting with a father about my experiences with Katie. He was clearly interested, as are many parents when they learn that I’m a sibling, and I felt the security of the instant connection I encounter with so many family members. He spoke of his second daughter, who is much younger than his child with disabilities. “It’s almost as though she doesn’t notice the disability at all,” her marveled, “yet I know she knows.” I nodded, not very surprised. I tell him that that’s the way it is as a sibling. “For me,” I said, “ disability was all I knew. Having a sibling with disabilities was all I knew. My family was just…” I paused, searching for the right word. It takes a moment. “Normal. It was just normal.”
“Typical,” a voice quickly corrects me from the side. “Typical,” echoes the father, a half-step behind. “Typical,” I repeat dutifully. And then I pause.
In contemporary disability parlance, we are not supposed to use words like “normal.” The dominant logic holds that disability is abnormal, and abnormal is always bad. “Typical” has become the preferred alternative, since it gives the impression of a more population-based and politically correct label. Typical denotes prevalence and frequency, not preference. Typical is sanitized. Typical fits so nicely with the other benign labels of our multicultural modernity. It holds promises of neutrality and hints at equality. There are good arguments for the term. Indeed, I use it myself in most cases.
But typical and normal mean very different things, and I didn’t simply misspeak.
My sister’s childhood and, in turn, my own were marked by uncertainties and some might say traumas that don’t settle down nicely for terms like typical. I want to be clear about this, particularly since an acquaintance recently accused me of not knowing what it was like for a family to struggle with a child’s disability, hinting strongly that we had an easy ride.
My parents were told Katie would likely not survive long after birth. They did not name her for several days, and I vividly recall a scene on my preschool playground in which my four-year-old self calmly explained to a staff member that we were waiting to see if she would live before deciding on a name. She did live, of course, but a clear diagnosis remained elusive for years. We were told to focus on verbal speech and were making some progress, until Katie lost her hearing through a series of antibiotic-resistant ear infections around age nine. What little speech she had vanished, yet in a tragic twist of the post-Oralism era, she had barely been exposed to limited sign language.
Unsurprisingly, the self-abuse began. She would bang her head against walls, the carseat, or the floor, sometimes throwing herself to the ground in parking lots or stores. This continued for years. We withdrew from our social world, an understandable response that I will always question. Our school district and then state acted abhorrently, refusing to comply with even her most basic educational needs. My parents sued and sued and sued, and we were embroiled in the legal battle for my four years of high school. We took it to the federal level. And we won. After years of being let down by the educational and medical establishment, not to mention a boggling array of well-meaning and largely useless therapists and specialists, at least we had the court system to count on. (Perhaps it’s no wonder I married a lawyer.)
I do not write any of this to shock you or ask for sympathy. Rather, I want to be explicit about the continuous precarity of my family’s life. And yet, even within this world of anxious ambiguity, disability was “normal” to me. This is a very different statement than to say it was typical. To be “normal” here was to go against all odds. It was simultaneously an unconscious and deeply political stance. It offered a form of resistance, not simply a reassurance of semantic inclusion.
While words have power, there is a very real danger in thinking they alone can set us free. For my childhood memories and, really, for me, it is an insult to say that disability was “typical.” The most curious aspect of many siblings of people with disabilities, as I see it, is our insistence that disability was normal, even when faced by the ugly stares of people who reminded us that we were anything but, whose eyes ushered us silently back to our cars. I would not use it describe a person (e.g., I would never say that I’m the “normal” child in the family – that’s just silly), but I firmly believe that it has its place. The term conveys something beyond disability politics and people-first language. It retains a necessary space to probe the pieces of our memories that remain unspoken, the fragments that many of us prefer to forget. As a highly political term, normal’s power lies in its refusal to wipe itself clean of its unsavory past.
And this is precisely why I plan to keep using it.