SPEAK TO ME
Thirty years ago, at the age of 18, my cousin Pia Jenk underwent a routine operation to remove her wisdom teeth. She suffered a cardiac arrest on the operating table of a London hospital and was left severely disabled. Since then, she’s lost a lot of her ability to control her movement, and has huge difficulty with eating and speaking. (She was also recently diagnosed with pantothenate kinase–associated neurodegeneration or PKAN, also known as neurodegeneration with brain iron accumulation 1 and, formerly, Hallervorden-Spatz syndrome, a degenerative disease in which excess iron progressively builds up in the brain and can lead to parkinsonism, dystonia and dementia.) Despite these problems, Pia lives alone; she gets about using two sticks and has an electric buggy for longer journeys. In 2011 Pia won an award for volunteering at FiSH Neighbourhood Care; she also attends art classes, where she paints beautiful watercolours.
The arrival of the iPad in 2010 has had a transforming effect on Pia’s life: she can now more easily communicate with the world using software that converts her two-finger typing into a synthetic voice. The temptation to read over her shoulder and/or anticipate answers was high for this impatient New Yorker, but I soon realized that any too-quick questioning could be met only with thumbs-up, thumbs-down gestures at best, whereas I wanted a real conversation and to learn with greater nuance what her not-speaking life was like. The software she uses has existed for computers for some time; the advantage of the iPad is its small size and weight, which means Pia can carry it with her at all times. In a 21st-century minor piece of irony, I’m transcribing the interview I did with Pia using Dragon Dictate speech recognition software, which converts my voice into text. We began the interview by testing the software’s various “voices,” which have people’s names, such as Rachel, Peter and Lucy.
Pia Jenk This is “Lucy.”
Lucy Sisman How unfortunate that that’s what it’s called! What is your software, and how long have you been using it?
Pia Jenk It’s the cheapest software available. It costs £1.49 and is called Speak It. I’ve been using it just over a year.
LS Are there lots of different voices available?
PJ Every European language, including French-Canadian, and several choices and accents to choose from for both sexes.
LS It only works with the iPad?
PJ I think so. It’s based on the most natural-sounding voice.
LS How long have you had the iPad, and what did you use before?
PJ Eighteen months; I used to use a Light Writer provided by the National Health Service, which I borrowed from the Augmented Communication Service in the hospital where I worked. I was fortunate because I got it on a long-term loan.
LS What’s changed in your life with the iPad? What makes it better than the Light Writer?
PJ The Light Writer was purely a communication device, and it was very heavy, so hard to carry about. The iPad has all sorts of different things you can do, so it’s much more fun.
PJ The Light Writer had a voice like Stephen Hawking or a Dalek, although they have improved them a little with their latest design.
LS You’re a two-fingered typist?
PJ I can touch-type, as I used to be a medical secretary at one time. But I find it hard to type accurately on glass. If you’re using speech software you need to type as accurately as possible.
LS Can you tell me why you need a device? What happened to you?
PJ In 1983 I went to have my wisdom teeth removed at the Royal Free Hospital in London. The anaesthetist intubated me incorrectly, by putting the anaesthetic breathing tubes into my oesophagus instead of my trachea — that is, into my food pipe rather than my windpipe. He impacted my throat and left the room. I suffered a cardiac arrest under the anaesthetic and got brain damage.
LS And how has that affected your speech?
PJ My tongue does not move as quickly as it should, so I have difficulty enunciating my words.
LS Is it speed, or precision, or both?
PJ When your tongue doesn’t move, it’s both.
LS Has that got worse or stayed the same since 1983?
PJ It’s got worse, although my speech wasn’t immediately affected.
LS Clearly you have physical difficulties with movement and everything else, but if we focus specifically on speech and communication, what are the drawbacks, aside from the obvious?
PJ The conversation tends to move on, so that when I am answering a question someone will have moved on to the next question, and I will be answering the previous one at the same time (if that makes sense).
LS So it demands that whoever is talking to you slows down.
PJ …and waits.
LS Is that something you want people to do, or do you get impatient when they’re slowed down?
PJ I think they get impatient.
LS So you go with their impatience? Or stay behind? Or get lost?
PJ I try to keep up. But with Faith [Pia’s mother], for instance, she can get confused, so I have to repeat the answers two or three times.
LS What about when you’re out and about? In a shop or something? Do you use this?
PJ Of course I do, but when there’s a queue behind me I tend to point at things first.
LS So you can get a long way with your thumbs up or thumbs down and finger-pointing?
Pia makes a thumbs-up gesture.
LS What are the key gestures—aside from thumbs-up, thumbs-down and finger-pointing? What does the slit-throat gesture mean? The Godfather? “Stop”?
Pia makes a thumbs-up gesture.
LS Is that a film term or a Pia thing, or did you learn that somewhere?
PJ I have no idea, never having been on a film set.
LS What else?
Pia stretches her hand towards me, palm outward, shaking it like a movie star trying to keep the paparazzi away.
LS Is that what that means? No paparazzi?
PJ It means “Leave me be.”
LS Is that because people try to be helpful? Does that happen a lot?
PJ When I fall, people try to help me to my feet, but often they make me feel more unbalanced, because when I’m on my feet I can crash over again.
LS So people are not understanding that you just need to regain your balance?
Pia makes a thumbs-up gesture.
PJ Especially before I start to move. I have to get my balance before I take a step.
How does it feel?
LS When you’re trying to talk, or when you’re using this software, do people assume they know what you’re going to say and finish your sentences for you?
LS What can you do to help the situation?
PJ Occasionally I put in different words when they finish the end of my sentences.
LS Just to show I am a person and I have my own thoughts, thank you very much?
LS Do you think you’re mistaken for being stupid?
PJ But sometimes for speed I let them finish my sentences for me.
LS What does that feel like?
PJ I get a lot of people speaking over my head as if I don’t exist.
LS Does that happen in all situations? Family? Friends? Shops? Church?
PJ With friends I stick my arm in the air to communicate that I have something to say.
LS Like hailing a taxi!
LS When you are talking to doctors, say, with your mother present, do they only address her?
PJ Yes, they do. But I normally type the list of things that I want to say before I go.
LS I can see that you use your own shorthand such as “b4” for “before” and “becos” for “because,” and as with texting, it takes less time, but it also sounds the same in the software too.
PJ Yes. But every now and again it doesn’t work, and when I programme stuff to say on the telephone I have to listen to it three or four times and change the spelling before I dial.
LS Tell me about the telephone.
PJ Usually, about halfway through my pre-prepared speech, whoever I’m talking to will ask for my customer number or my postcode.
LS So then what do you do?
PJ I keep on with my speech until the end, when I add, “Now do you have any questions?’ It is very difficult to speak one question at a time, and requires a lot from the other person. It just requires patience.
LS So has this made you very organized?
PJ (she smiles) Not very organized, but if I need to get something across to someone, it’s best to have it written down. Then I don’t forget anything.
LS Listening to that reply, obviously I’ve read it—and then I’ve heard it and all emphasis and tone of voice and the way you say something goes out the window. A lot of what people say is about tone and emphasis, and humour, of course, is in there too. So it must be hard, for instance, for you to tell a joke?
PJ It is. Why did the chicken cross the road?
LS Is that a bit of your personality that’s now lost?
PJ Absolutely—but I think when you lose your speech that you feel as though you have no personality.
LS Are there other emotions that are hard to convey?
PJ When I am angry I shout, so that’s not really a problem.
Pia tries to shout.
PJ (in her own voice, not through the iPad) No, I can’t really.
LS So if you can’t really be angry in speech, how do you do it?
Pia shakes a clenched fist.
LS What other things do you feel?
PJ There are all sorts of emotions that don’t come across, including the more extreme ones, such as joy, melancholy and sadness.
LS Presumably another thing that’s missing is privacy?
PJ I can turn the volume down, but it doesn’t go to a whisper or a shout.
LS Would it help to have a feature that allowed that, or would that be too artificial?
PJ Definitely a good thing. The other problem with all speech software is that it’s not loud enough in crowded situations. If there are more than three or four people talking at once, you won’t hear a synthetic voice.
LS Are there any advantages to not being able to talk?
PJ You can get out of tricky questions quite easily if you don’t have a voice.
LS So what’s a tricky question?
PJ Today in my art class I was asked if I’d enroled for the term, but I hadn’t done it yet. I looked vague and said I thought I’d already done it, but would check. I always enrol online, so I blamed the computer.