Katie Booth: Hi, I’m Katie Booth. My sign name is Katie. And I am a freelance writer and the author of “The Invention of Miracles: Language, Power, and Alexander Graham Bell’s Quest to End Deafness.” And I work here at the University of Pittsburgh. I’m gonna read a little bit from the prologue of the book.
In the hospital bed, my grandmother faced the window, bathed in the blueish light of the rising moon. I watched her body, memorizing it: the wrinkles of her fingers, the way her jawbone tucked back into her neck, the way her tongue moved like a soft oyster in the shell of her mouth. I had known her my whole life, but I had never before seen her weak. Now it was hard to look at her. The roundness of her body, which once seemed so soft and warm, now was only heavy, seemed only to pin her to the hospital bed. Her usual facial expression — eyes sharp, mouth firm — was now tired, resigned. Her head lay on the pillow; her gray hair, thin and oily, was swept back from her face; her eyes were blank and dark. She wasn’t dead, not yet, but something had shifted.
Normally I saw my grandmother in her home among her deaf community, where apartments were set up with blinking lights for alarms, where telephones released little scrolls of written English, and where furniture was arranged for open sightlines in order to use ASL across rooms. She lived among the culturally deaf, defined by the use of ASL and the observation of deaf cultural norms. In those spaces, my grandmother had more access to information than I did. With friends, she communicated in quick, fluent ASL, and even when I could catch the gist of individual words, I could also tell there were layers of meaning that were escaping me. They were carried in the small twitch of an eyebrow, the subtle lift of the corner of a lip, an invasion of space, or a quick shift away. In her world, she was strong, firm, steady. But here in the hospital, things were different.
My grandmother had suffered her heart attack 4 days before and had been in the hospital alone for the 3 days that followed. Only then did anyone get in touch with our family. In the meantime, my grandmother’s presence barely seemed to register. My grandmother, through notes in scrawled English, made several requests — few of which seem to have been addressed. She asked for someone to contact us and for a TTY, a text-based telephone device, so that she could call us herself. They gave her a TTY but ignored her insistence that it was broken. My grandmother asked for an interpreter at least 4 times before we arrived and received one only once, when the cardiologist came to see her. Even then, she misunderstood her diagnosis — she had no idea the severity of the situation, the damage that had been done to her heart. With almost no information, she went on waiting for us. For those 3 days, we had no idea she was lying there.
I was 19 at the time and took a late-night Greyhound back home from college and accompanied my mother to the hospital the next morning. Now, from my grandmother’s room, my ears strained to hear my mother. I could capture phrases like Americans with Disabilities Act and informed consent and civil rights, legal code words that culminated in violation of federal law. She was battling for my grandmother’s right to access her own language, her right to understand and to be understood.
By this point, the early 2000s, the broader deaf community had been entrenched in this fight for nearly 150 years. They’d been fighting ever since one of the foremost teachers of the deaf began to say that ASL was unnecessary, that the deaf could do without it — and should be forced to, if possible. In the hearing world, this teacher is renowned, but not for the generations-long struggle he began. He’s known as a plucky inventor, a man who helped people communicate across cities, across nations, across oceans. In the deaf world, however, he’s remembered with rage. He’s remembered who launched a war in which the deaf would have to fight for their lives.
My mother’s voice — violation of federal law — lingered in the air. But it felt like legal protections mattered little. We still had to explain, yet again, that the deaf were legally and ethically entitled to the free use of their language. That my grandmother had the right to know why she’d been hospitalized. That she had the right to contact us. That she was human, and her language was real and true and necessary and wholly distinct from English. It was never more vivid to me that until we could usher in a more widespread understanding of ASL as a dignified and necessary language, deaf culture and deaf lives remained at risk. The theft of this language, culture, and dignity was the legacy of Alexander Graham Bell.