Prologue Prologue In the hospital bed, my grandmother faced the window, bathed in the bluish 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, was only heavy, seemed only to pin her to that 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 typed English, and where furniture was arranged for open sightlines in order to use American Sign Language (ASL) across rooms. She lived among the culturally deaf, defined by the use of ASL and 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 the individual words I could also tell that there were layers and layers of meaning that were escaping me. They were carried in a 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 firm, strong, steady. But here in the hospital, things were different. My grandmother had suffered her heart attack four days before and had been in the hospital, alone, for the three days that followed.
Only then did anyone get in touch with our family. In the meantime, my grandmother''s presence barely seemed to have registered. My grandmother, through notes scrawled in English, had made several requests--few of which seemed to have been addressed. She asked for someone to contact us, and for a TTY, a text-based telephone device, so she could call us herself. They gave her a TTY but ignored her insistence that it was broken. My grandmother had asked for an interpreter at least four 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 of 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 three days, we had no idea that she was lying there. I was nineteen at the time and knew that a deaf family member in the hospital was an all-hands-on-deck situation. When I got the call, I took a late-night Greyhound back home from college and accompanied my mother to the hospital the next morning. In this environment, I had access that my grandmother didn''t, and the fact sat uneasily in my stomach. As I watched my grandmother, I listened for my mother''s voice as she spoke to the doctors and nurses in the hallway. I couldn''t hear her sentences, but I could hear the way her sounds began gently and then rose firm in advocacy. My mother knew the hospital staff would listen to her because they always turned to the hearing family members in these moments. They wrongfully saw us as the interpreters, caretakers, decision makers.
Without us, they behaved as though there was simply no one with whom to communicate. It happened everywhere. When strangers realized my grandmother was deaf, their faces contorted with discomfort or gawking fascination. Their bodies became stiff, moved away from her. They made mistakes. At restaurants, waiters were too flustered to serve her. When they did, chances were small that she would get what she had asked for, even though she knew how to point clearly at items on a menu and write any additional requests in her memo pad for them to read. At the mall, cashiers always forgot to remove security tags, and so she always set off alarms that she couldn''t hear.
She was chased down by security guards, who placed their hands angrily on her shocked arms before she had any idea what was happening. Here, at the hospital, doctors and nurses did what they pleased with her body. Often they didn''t look at her face at all. They avoided her eyes, which were hungry for information and seemed to embarrass them. If they spoke to her, they held their eyes big and moved their mouths in long, round shapes. They seemed to think that their distorted mouths could substitute for a certified interpreter, but my grandmother could make little meaning out of the charade. They ended with saccharine smiles, like everything was okay now, and then tugged at her arms, stuck needles into her veins, or rolled her bed to the operating room for open-heart surgery. Mostly, they spoke to one another.
Their faces hovered intermittently above her and then, always, they turned away. When my grandmother tried to communicate, she was treated as a bother, but when my mother or I spoke, hospital staff listened. Now my mother was harnessing this fact to resist its inherent inequality. From my grandmother''s room, my ears strained to hear her. 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 to communicate across cities, across nations, across oceans. In the deaf world, however, he''s remembered with rage. He''s the man who launched a war in which the deaf would have to fight for their lives. I could hear my mother''s voice as the doctor pulled her aside for privacy, and then the doctor''s low murmur. When my mother responded, I could hear no language at all, just soft undulations of urgency. I measured the wreckage by the tones of her voice. I looked at my grandmother''s face, lit evening blue, and counted her shallow breaths.
When I was a child, I always thought of my grandmother as strong, sturdy, immovable. She carried her dignity like she carried our language: on her body. She stood tall and with her chin high, scanning the world around her. She clutched her purse in one hand, my hand in the other. We went out like that--steeled, lips tight--into the hearing world. But when we needed to communicate with each other, we could shrug all that rigidity off; we would slip our hands free to talk. Our language took our full attention, our full bodies. We leaned forward into certain words, backward into descriptions of things that had happened before.
When my grandmother and I signed, we arranged our words in the space before us and protected the space of our words. Our lips brought almost no sound but still moved with meaning, letting loose little clicks and puffs. In ASL, my grandmother was firm, direct, and controlling. When she summoned warmth it looked a little like she was faking it, like she was trying out the feel of a smile. She didn''t show warmth on her face so much as she showed it through small gestures. After my grandfather died, she moved out of the little house down the street and into a deaf apartment complex about an hour away. Our visits became less frequent then, and this care she exhibited took on a new intensity. She was always making me cinnamon raisin toast and gave me small gifts whenever I visited.
If she had forgotten to get one, she would pluck a mirror from her wall. "I bought this for you," she''d say, as though it didn''t leave a white shadow where it once hung. "I just put it there in the meantime." If I said I liked something, she wouldn''t let me leave her home without it. "It''s for you," she''d say, pushing it sternly into my arms. There was no arguing with her; she was forceful even in her generosity. If I wasn''t careful, I could have a whole loaf of bread put before me, slice by buttered slice. By the time I was a teenager, I had learned to compliment her belongings selectively, lest I leave her shelves and walls bare.
When I was young, we mostly communicated through ASL; as I grew, and began to forget the language, this was supplemented with written English. Occasionally, my grandmother summoned her voice, but since she didn''t use her voice with strangers, it always felt special, something that only came out when things were safe. Sometimes her voice made words in English, and sometimes her voice was just a thing that arose from her, something that captured a particular mood or mimicked the vibrations she felt in the world. It communicated on its own terms. Staticky and monotone and often indecipherable to those outside our family, my grandmother''s voice is one of the sweetest sounds I''ve ever known. As a child it never occurred to me that these elements couldn''t coexist--speaking and signing--nor did I know that the demand placed on voice was one of the most painful things that happened, and continues to happen, to deaf people. In the hearing world, it would come to represent their very humanity; deaf people who couldn''t speak were often referred to as monkeys, or prehumans. I didn''t know that the chief person behind the.