January 25, 2013 7:22 pm

My daughter’s voice

Yes, the device that enables my daughter to talk is incredible – but so is the human effort involved. Rather than focus on the technology, just listen
Max Apple©Annie Sinton

My daughter and I are driving to the mall and I hear two voices that sound very much alike. One says, “Right turn in 200 feet”; the other one asks, “What are we doing next?” Both are flat, uninflected monotones. By sound alone I can hardly distinguish between these robotic voices. One is my GPS, the other is my daughter, born with cerebral palsy, who has learnt to use an electronic talker.

Elisheva sits in her wheelchair in the second row of our van. Her speaking device is mounted on a bar in front of her. She has a great sense of direction and keeps her eyes on the road. She knows that I am likely to make a wrong turn even when driving to places that we frequent. She stays alert and sometimes detects my waywardness as quickly as the GPS. But the device can redirect me in seconds. My 23-year-old daughter, with only partial control of the movements of her left hand – her talking hand – has to compose before her words can become audible. As I drive, I listen to those two voices, both artificial – but one that could hardly be more human.

More

IN FT Magazine

As a teacher, I use the word “voice” to suggest the individuality of a particular literary work. Voice encompasses vocabulary as well as rhythm and tone; a voice has a characteristic pattern of phrases and pauses. As you read this, you are in the presence of my voice, my attempt to line up words so that they might constitute meaning. As a writer I know what voice is; as a father I am constantly learning.

At about two, when children usually begin to say distinct words, Eli could only make sounds. Her lips lacked flexibility; her tongue lay flat in her mouth, her cheeks turned away from touch. With the guidance of speech therapists, my wife and I devised games to desensitise our daughter’s face. In one of them, “Beard and Moustache”, we rubbed our fingers across her cheeks and lips as if we were giving her an old-fashioned barber’s shave. We tried to encourage her to raise the sides of her tongue in order to create a valley in the middle. We invented another, “Name that Valley”, with the enthusiasm of game-show contestants. Eli co-operated. She wanted to speak. She contorted her face in effort, she breathed as deeply as she could and she did produce sounds – only those sounds never became words. She spoke in noises that no one understood. She banged her head in frustration.

Still, by the time she was seven she had learnt to use an artificial voice. With difficulty, she could isolate the middle finger of her left hand to poke at a keyboard, a keyboard that contained a language, Minspeak. With three hits to create each word she could make her device speak, yet she always wanted to accompany it with her own sounds, even though her speaking voice remained a kind of grunt. To be understood she had to use the electronic talker – except once.

I was working in the garden while Eli kept me company cruising about in her power wheelchair. I heard the word “wheelbarrow,” pass through her lips. She did not say it crisply, but it was distinct. I could hear the “l” and the “r”, and the echoing final “w”. I stood up and looked at her. “Did you say wheelbarrow?” I asked. She nodded and her face bloomed. She tried to say the word again and again, but the more she tried the more impossible it became. I heard what I always hear, the vocalisation of her struggle. “It’s OK,” I told her. “I understood.”

I’ve never heard wheelbarrow or any other word again, although in the synagogue and at home I often hear her version of “Amen”, identifiable more by its placement at the end of a prayer rather than by her recognisable vocalisation. And I hear the letter “n” in so many versions that it almost seems a one-letter vocabulary. Eli says a word that sounds like “ma,” and it often does mean mother. But that single distinct wheelbarrow remains the highlight of my daughter’s life as speaker and mine as a listener. Her talker has a choice of voices, both male and female, ranging from husky to almost whispering. But Kit the kid, or Ursula, or Glenn, or June, useful as they are, do not approach the breathy beauty of wheelbarrow.

Eli has graduated from high school and now volunteers at several places including a rehab hospital and a children’s museum. With her curly brown hair, her many varieties of smile and her tiny, girlish figure she is always a noticeable presence as she operates her chair using a golf ball as joystick. When she drives into our local supermarket, sometimes accompanied by her twin four-year-old nieces and their six-year-old brother, people make way, but they smile at the group as we roam the aisles in a kind of controlled chaos. The boy sometimes stands on the battery at the back of the wheelchair pretending that he is a lookout atop the sail of a pirate ship. From there he towers over Eli and his sisters. The little girls look to Eli for advice as they try to distinguish between the many varieties of milk. Their aunt watches them as I stay in the background. She is a careful babysitter. I notice that she positions her wheelchair to protect the girls from falling milk cartons. She grunts to signify their correct choice, and she stays close. She scans the next aisle to make sure there is room for her chair and the children. She is so watchful that I worry that she might run over anyone who comes too close to the children. It’s a happy scene; at its best, it looks like a poster for inclusion.

Eli with her talker, which she operates with the middle finger of her left hand©Annie Sinton

Eli with her talker, which she operates with the middle finger of her left hand

But it’s not the whole story. Time after time, strangers who see us in those buoyant moments in the supermarket, and in other public places, come over to greet Eli, and then approach me. To a person, they come to offer praise. They tell me that they love to see my daughter out and about, so engaged in the everyday world. They marvel at her ability in spite of the obvious difficulties. But most of the time, they are marvelling at the wrong thing. When they come over, they want to talk about the electronic device. Far too often, the kind stranger who asks Eli a question does not stay for an answer. They have no patience for the human part of the human/technology combination that is my daughter’s voice.

People notice the lights and icons on the keyboard. A finger moves, a voice emerges. The onlooker thinks he is in the presence of an even more amazing version of Siri. And why not? We are all accustomed to the praise of devices. We live in an era of compact electronic wonders. There is awe in the smartphone and billions in profit follow in its wake. We have all read about people whose lives and businesses have been transformed by instant connectivity. We have read about lawsuits over the details of touch. So it is natural that people view my daughter within this aura of technological achievement. They imagine that in her artificial voice they are seeing something that is at the cutting edge. In fact, Eli’s particular talker has less memory than almost any laptop, fewer voices than some toys, and is far less flexible than an iPad. Those who look at my daughter and see technology do not notice what matters most, that single finger hovering above the device as Eli considers how best to compose, in a limited language, some version of what she wants to say.

I agree that electronics are great, and I too praise technology. Before Eli had a device she pointed at items on pages that my wife had laminated and then clipped on to a large ring binder. It was a cumbersome and awkward system and required someone to help Eli roam through the choices. Without her talker there is no doubt that our daughter would be a far more limited person. I look forward to the time when even the small market for such talkers will encourage entrepreneurs to devise ever better devices that will unlock ever more voices. But if I draw back somewhat from the universal praise of electronics I do so in order to draw attention to the even greater wonder, the user – that person who every day breaks another kind of sound barrier.

Sometimes Eli impersonates our GPS telling me to “make a U turn when possible”, but she’s only teasing. She knows that without guidance her father will make plenty of mistakes. Our talking map has delivered us to and from many out-of-the-way places, but it can only function if I give it an exact destination. My daughter has no exact destination; she has courage, determination and a hard-won language. Where she’s going will depend not only on technology, but on who will stick around to listen

Max Apple is the author of ‘The Jew of Home Depot and Other Stories’ (The Johns Hopkins University Press, RRP£14)

Copyright The Financial Times Limited 2014. You may share using our article tools.
Please don't cut articles from FT.com and redistribute by email or post to the web.

LIFE AND ARTS ON TWITTER

More FT Twitter accounts
SHARE THIS QUOTE