When I was nineteen, my grandmother suffered a heart attack. I sat by her side while she was slumped in her hospital bed, and watched her body, waiting for her to say something. My grandmother is Deaf—the capital D represents Deaf culture, those who use American Sign Language to communicate—and she taught me ASL when I was growing up. Signers must focus fully on one another’s bodies, as they use movements of the hands, face, and arms to convey meaning. In that moment, I drew from Deafness, studying the wrinkles of her fingers, the way her jawbone tucked back into her neck, the way her tongue moved like an oyster in the shell of her mouth. Her thin gray hair was heavy with oil and swept back from her face. Her eyes were blank and dark. It would be six days before she died, but something had already shifted. The roundness of her body, once so soft and warm, now seemed to weigh her down.
Four days earlier, my grandmother had called 9-1-1 on her TTY, a device for the deaf that uses a keyboard to send English text over a telephone connection. “HEART HRURT,” she typed. The ambulance came to the Deaf apartment complex where she lived and took her to the hospital, where she wrote out a list of things she needed: glasses, because her vision was her only access to language; TTY, so she could call her family; water; rosary. The TTY was delivered, but the phone line was never connected. It was two days before the hospital staff contacted us, three days before we received the message.
As I sat with my grandmother, I listened to my mother speak to the staff at the nurses’ station just outside. I couldn’t make out her sentences, but I could hear the way her voice began gentle and became firm; I caught Americans with Disabilities Act and informed consent and civil rights, legal code words that culminated in violation of federal law. Even though the ADA requires hospitals to provide effective communication for all interactions with hospital staff, my grandmother had an ASL interpreter only when the cardiologist came to see her. Even with the interpreter’s aid, my grandmother misunderstood her diagnosis. Knowing almost nothing of the seriousness of her condition, she waited for us to arrive.