Ghost Boy Page 8
“You’ve come so far, Martin!” she told me. “I’m going to go and see them. They’ll want to know. You’ve only been using your computer for just over a year, and look at all you can do on it!”
I knew there was no point trying to stop Mum after she’d made the decision to boast, so I waited while she went off to the center a few weeks ago and on her return listened while she excitedly told me what had happened.
“They want to see you,” she said. “They can’t believe how quickly you’ve progressed. They’ve invited you to attend a workshop with some students.”
I can understand everyone’s surprise. Even I feel a little swept off my feet now that I have a job. In fact, I have to check I’m not dreaming each time I’m pushed into the office where I volunteer one day a week. I’m working at the health center where I helped fix the computers with Virna, and I can hardly believe that I’m being asked to do more than stare blankly at the walls of a care home. The work is simple—I photocopy and file because my right arm has grown strong enough to lift paper now, and a wonderful colleague called Haseena helps me if there is something I can’t do. I also fix the computers as and when problems arise.
The best thing about the job is that it means I’ve finally been able to leave the care home. It’s the strangest feeling every Tuesday when I’m pushed through the doors of the building, and I feel my body imperceptibly lean right towards my old classroom, only to be turned in the opposite direction towards the health center. Leaving the care home is a fork in the road; I’d die if I were sent back to one now. I sometimes wonder whether a shadow of the ghost boy lingers in the place where I spent so many years. But I push the thought away. I refuse to think about the past now that I have a future.
My body is getting stronger in a number of tiny ways as I start to use it more. On the days when I’m not working, I’m at home practicing on the computer. I’m a little sturdier when I sit upright now. My neck muscles are strong enough for me to use my headmouse most of the time, and I’m beginning to use the touchpad on my laptop a little because my right hand in particular is getting more reliable. My left is still largely uncontrollable, so I might not be a butterfly quite yet but I’m slowly emerging from my chrysalis.
The only visible link with my past is the bib I still wear, a legacy of the days when I would drool so uncontrollably down my chest that a speech therapist recommended my mouth be filled with icing sugar to force me to swallow. I don’t really need the bib anymore, and my mother doesn’t want me to wear it, but I can’t quite bring myself to stop. Maybe I’m afraid of losing the magical powers I’ve gained unexpectedly if I test them too much by taking off the bib. Maybe my reluctance to give up the trappings of my baby years is the only act of rebellion I have at my disposal, and I want to make the most of it as I start to realize what it means to make my own decisions. Choosing whether or not to wear my bib each day is often the only opportunity I have to make a decision, so I’m determined to be the one to make it.
Now, as I sit inside the car waiting for my mother, I watch students walking up and down the road in front of me. The communication center is part of a university, and I dream of studying at a place like this because I know that one day I’d like to work full-time with computers. There are occasions when they seem like the simplest things in the world compared to everything else I’m learning.
I’ve even started testing software for a company in the UK. I use their communication programs on my computer, and Mum and I have been finding bugs in the software every now and again since we started using it. The makers used to email solutions to the problems to my mother, but gradually I became the one they corresponded with. When they realized how well I knew the systems, they asked me to start testing them. I’ve no idea how or why I understand computers so well, but I’ve stopped asking. It’s often like that these days: there are things I do without thinking that surprise people.
When my father came into the office recently, he looked at me quizzically as I put documents into alphabetical files.
“How do you know what goes where?” Dad asked in surprise.
I hadn’t really thought about it. I still can’t read properly but I’d matched the letter I saw on the name of the document to the one on front of the file. Letters are just symbols after all—an “A” looks like a man clasping his hands above his head, “M” is the top of a mountain range, and “S” is a slithering snake.
The car door opens and Mum leans down towards me.
“Are you ready?”
She sets my wheelchair beside the door and lifts my legs out of the car before taking my arm in hers. We pull against each other as I stand up before wriggling down into the chair. Mum puts my laptop on my knee and pushes me towards the building, where I watch the electric doors I’d never even seen two years ago glide open to let us in. A woman directs us to a room where coffee is being served, and my eyes slide over the people who are standing together and talking. Two of them are men, neither of whom is in a wheelchair, but each carries a box that looks a little like the device Mum and Dad once almost bought me. I look at the men with interest, like an ornithologist might look at a rare bird. I’ve never met someone as silent as me before.
“Shall we get you ready?” I hear Mum ask.
She pushes me into a small lecture room filled with desks and chairs lined up in neat rows. A woman is unpacking papers as she stands in front of a whiteboard at the other end of the room.
“Where do you want to sit?” Mum asks and I point to the back row of chairs.
When we’re settled, Mum unzips my laptop. A peal of notes bursts into life as she switches it on, and the woman at the whiteboard looks up. She’s middle-aged with cropped gray hair, glasses, and a shawl draped around her shoulders. She smiles at me. I look down, unsure what to do. I’ve never been to something like this before. I haven’t sat among a group of people who are learning and discussing things. I don’t want them to notice me.
Mum and I wait as people slowly file into the room before sitting down. They chat with each other, say hello, and smile until finally everyone is seated, and the woman with glasses starts to speak.
“Good morning,” she says with a smile. “My name is Diane Bryen, and I work at Temple University in Philadelphia, where I run a program called ACES, which aims to help adult users of communication technology determine and govern their own lives.
“I believe this is the way we will help new voices to emerge and break down stereotypes about those with disabilities.”
The woman’s voice is bright and full of energy. She looks around the room encouragingly.
“There’s no doubt that those with disabilities face significant barriers,” she says. “Barriers to equal quality education, barriers to getting family support so that children can be raised with that support, barriers to affordable and accessible housing, barriers to equal access to healthcare and employment.
“These are consistent barriers that you come across with each disability group, but what I am here to talk about today are not the most obvious injustices. Instead I want to talk about the whole host of other limitations imposed upon people by society because disability is as much about disabling attitudes as it is physical, cognitive, or sensory limitations. If someone does not expect or is not expected to achieve, then they never will.”
I look at Dr. Bryen. I’ve never heard someone speak with such passion and conviction about people like me before.
“I believe that if those with disabilities are to break down the barriers facing them, then they must realize they have the right to, that they can have goals just like anyone else—and to do that they must dare to dream.”
I watch as Dr. Bryen looks around the room.
“The man I’d like to meet most before I die is Nelson Mandela,” she says. “Because despite being imprisoned for so long, he had a dream that he held on to even when he was deprived of freedom and basic nutrition. Mr. Mandela was bold in his dream and followed it until he saw it realized.
“He was living the life he dreamed of, and I’ve met many more people like him. For instance, I know a musician who dreamed of singing and programmed his communication device to do it for him and a lecturer at the university where I work who has cerebral palsy and does a job she loves. Personally, too, I’ve seen someone I love dare to dream because my brother is blind.
“Each of these people has achieved so much, but what every one of them did was dare to dream. It is a powerful thing, and we must all learn to do it.”
Dr. Bryen looks at a man sitting near the front of the room.
“What’s your dream?” she says to him.
He is able bodied and shifts uneasily in his seat as the spotlight falls on him.
“To write a book one day,” he says quietly.
“And how are you going to achieve it?”
“I’m not sure.”
Dr. Bryen smiles at him.
“That’s why we need to think long and hard about our dreams, because once we dare to have them, we can start the process of trying to realize them.
“Dreams don’t have to be huge though. I know of one woman who dreams of having a subscription to a soap opera magazine and another who wants to eat macaroni and cheese for dinner each week.
“Dreams can be any size you want them to be. But the important thing is that you have one that is yours.”
Dr. Bryen looks around the room again. Her eyes travel over the rows of people, further and further back until they come to rest on me.
“What do you think you need to achieve a dream?” she asks.
Everyone is looking at me. I don’t know what to say. I wish they would look away. I want to be left alone. I’ve never been looked at by so many people at once. I don’t know what to do.
“I think Martin would say you need to work hard,” Mum says.
She is speaking for me, trying to fill the silence I’m carving open like a gash. I wish I could disappear.
“But I want to know what you think,” Dr. Bryen asks as she looks at me. “It’s Martin, isn’t it? I want you to tell me what you believe a person needs to achieve their dream.”
There’s no escape. The room feels so quiet as I point my headmouse at the laptop and start clicking on switches. After what seems like forever, I finally speak.
“You need to be given the chance to decide for yourself what your dream is,” my computer voice says.
“What do you mean, Martin?”
I click on my switches again and again.
“People must help you work out what your dream is. They must enable you to have one.”
“Oh no!” Dr. Bryen exclaims. “I don’t agree with you at all. Don’t you see, Martin? You can’t ask other people to give you permission to dream. You just have to do it.”
I’m not sure if I understand what Dr. Bryen means. I’ve spent my whole life being given the food others chose for me and put into bed when they decided I was tired. I’ve been dressed as they saw fit and spoken to as and when they wanted to speak to me. I’ve never been asked to think about what I want. I don’t know what it’s like to make decisions for myself, let alone dare to dream. I look at her. I know so much about other people’s expectations and so little about my own.
But is what she’s saying true? Might I really start to make decisions for myself now that I’m finding my voice? I’m only just beginning to realize that somewhere at the end of this journey there might be the kind of freedom I could never even have imagined once. I’ll be able to be the person I want to be, but do I really dare to dream who he is?
21 SECRETS
The unexpected side to being a ghost boy was that people inadvertently showed me their secret worlds. I heard farts rip like bullets from a gun as people walked across a room or watched them check their reflections so often it seemed as if they were hoping to see a more beautiful version of their face magically appear. I’ve known people to pick their noses and eat what they found or adjust their clinging underwear before scratching their crotch. I’ve heard them swear and mumble to themselves as they pace around a room. I’ve listened to arguments unfold as people twisted facts into lies to try and win a contest.
People revealed themselves in other ways too: in a touch that was gentle and caring or rough and unthinking; in feet that shuffled with fatigue when they walked into a room. If someone was impatient, they would sigh as they washed or fed me; if they were angry, they would pull off my clothes just a little more roughly than usual. Happiness fizzed off them like a small electric pulse, while anxiety had a thousand telltale signs from the nails people bit to the hair they pushed behind their ears again and again to try to contain their worry.
Sadness, though, is probably the hardest thing of all to hide because sorrow has a way of seeping out however well people think they’re containing it. You only have to look to see the signs, but most people don’t, which is why so many seem to end up feeling lonely. I think that’s why some of them talked to me: speaking to another living creature—however inanimate—was better than no one at all.
One of the people who confided in me was Thelma, a caregiver who worked at the home when I was first there and often ended up sitting with me and some of the other kids as we waited to be picked up at the end of the day. Every afternoon I would sit listening for the white gate at the end of the corridor to squeak open as someone pushed it. Then as footsteps started to echo down the hall, I’d try to work out who it was: the click of high heels meant that Corinne’s mum had come to get her, heavy army boots told me it was Jorika’s father, while the soft pad of Dad’s shoes spoke of the sturdy man he still is today, and my mother’s shoes were almost silent except for the muffled rustle of her rapid steps. Some days I could guess who everyone was before I saw them, but on others I got them all wrong.
Each afternoon the other children would leave one by one, and the building would slowly fall silent: phones would stop ringing and people would stop rustling, my ears would hiss as the air conditioning was switched off and my brain would fill the silence with white noise. Soon it would be just Thelma and me waiting, and I was always glad it was her because she didn’t get angry if my father was late.
One afternoon we were sitting together when a song came on the radio, and Thelma stared into space as she listened to it. I could feel she was sad today.
“I miss him so much,” she said suddenly. Although my head was bent to my chest, I could hear that she had started to cry.
I knew what she was talking about: her husband had died. I’d heard people speaking about it in low voices.
“He was a good man,” she whispered. “I think of him all the time, every day.”
There was a creak as Thelma shifted her weight on the chair beside me. Her voice cracked as she spoke, and her tears fell faster.
“I can’t stop seeing him at the end. I keep wondering if he understood what was happening. How did he feel? Was he scared or in pain? Did I do enough? I keep going over and over it in my mind. I can’t stop thinking of him.”
She sobbed even more.
“If only I’d told him more that I loved him,” she said. “I didn’t say it enough, and now I won’t get a chance again. I’ll never be able to tell him.”
Thelma cried a little more as I sat beside her. I could feel my stomach knotting inside me. She was a kind person who didn’t deserve such sadness. I wished I could tell her she’d been a good wife—I was sure she had been.
22 OUT OF THE COCOON
Was it inevitable that I would become terrified of solitude after spending so many years alone?
After attending the workshop at the communication center last month, I’m back attending a week-long course about augmentative and alternative communication or AAC. Everyone, from people like me who use AAC to the pare
nts, teachers, and therapists working with us, comes to this center. But this particular course is for students studying for a degree in AAC, and I was invited to take part by the center’s director, Professor Alant. Mum has come with me each day, but this morning she has had to go to a hardware store because there’s a problem with one of my switches. It means I’m all alone.
As I look around the room full of strangers, I realize that I can’t remember ever being without a family member or caregiver close by. I spent years in enforced solitary confinement inside myself, but I was never physically alone until now. I can’t remember being a child who ventured farther and farther down the road until I found the courage to turn the corner alone for the first time. I was never a teenager who took my first steps towards adulthood and independence as I defied my parents by staying out all night.
I feel terrified. What should I say? What should I do? I sit in my chair at the back of the lecture room, hoping to be inconspicuous, and breathe a sigh of relief when the first lecture starts. Then there’s the tea break. I know that if I’m going to join in, someone will have to push my chair for me, put a straw into a mug, and put it near enough for me to bend my head down to drink it. So when one of the students asks if I’m coming for tea, I tell her that I would prefer to stay where I am. I’m too scared to accept the offer. I don’t want to be a burden or impose myself on people I don’t know.
But as I sit in the room and watch people file out past me, chatting and laughing together, I know that my resistance is pointless. I will always need help to navigate through the so-called real world—to move around, negotiate doors, eat, drink, and go to the toilet. I can’t do any of these things alone, so if a stranger wants to open a door, I must smile at them; if someone offers to push me up a step, I have to accept their help even if I don’t want it. It’s only when I begin to let strangers help me that I’ll start moving beyond the limiting place where my parents are always with me and everyone is familiar. As the cocoon I’ve been hidden in for so long begins to break apart, I have to learn new ways.