Finding a Voice

by Kim Hood

  ‘This is Lucy,’ Cynthia introduced when we were all back in the van.

  ‘Hi, Lucy,’ I greeted her, but there was no response from her whatsoever.

  Cynthia and I sat in the only two seats at the front of the van. The whole back of the van was open, with metal strips running from back to front where straps could be fitted in slots, attached to parts of the wheelchairs, and ratcheted tight so the chairs didn’t move or tip over while we were driving.

  We drove on for another ten minutes or so, Cynthia singing or humming the whole way, and then turned into the drive at a big bungalow. Mr Jenkins had given me directions from this house to the nearest bus stop, so I more or less knew where it was in town. I hadn’t known what to expect though; maybe something more hospital-like? This just looked like an ordinary house, with a bit of a flower garden and yellow curtains in every window. The drive was big and there were three cars parked outside, but then, the house looked pretty big too, big enough that it could be a home for a very large family.

  When I followed Cynthia and Lucy in, pushing Chris’s chair, I immediately knew that this was not an ordinary family home. It was more a feeling than anything that I could see. Things just didn’t seem quite right to be a usual home. The walls were painted a warm lilac colour, which coordinated with the yellow and lilac curtains, and yet the tile floor seemed too institutional for the soft colours above it. Plus, there didn’t seem to be any of the knick-knacks that would usually be in such a coordinated house. No paintings, no shelves or china cabinets with ornaments, no photos on the wall. It was just – pretty but empty.

  Part of what contributed to the empty feeling was how big and open the room that we had entered was. It was huge. There was a table that would fit more than eight people on one side of the room, with what looked like a normal-sized kitchen in an L shape at the end. On the side we had just entered there was a very small sofa and a large television. That was the only furniture in the room. But when I looked around I could see why it needed to be so big and so open. Besides Lucy and Chris, there were three other kids in wheelchairs in the room. I had never seen so many wheelchairs in one place before – not even in the SE. They took up a lot of space.

  There was another woman in the kitchen and she came out when we arrived.

  ‘Hi, Lucy, Hi, Chris,’ she greeted, with actual eye contact and a bit of a squeeze to each arm. ‘Hi, Jo. I’m glad you could come!’

  For the first time since leaving the school, I felt that I might be welcome here. And I was relieved to see that someone in Chris’s house actually talked directly to him. This woman was very young; she didn’t look much older than me. She was dressed in jeans and a hoodie that I wished I had myself.

  ‘Sit down,’ this woman invited. ‘I’m Alison, and, before you sit down actually, come meet Chris’s housemates.’

  I was introduced to Jamie, Teresa and Sam. Most were not able to talk, or at least they didn’t greet me, but Alison made eye contact with each one as she introduced them and gave a small bit of information to me, almost as if they were introducing themselves.

  ‘Jamie is the oldest here. He’s actually leaving us for better things soon, aren’t you, Jamie?’ Alison said, smiling at him. He gave the slightest grin back.

  ‘And this is Teresa.’ Alison had led me over to a girl, whose wheelchair had a kind of a tray over it, with symbols similar to the ones I had tried to use with Chris on it. ‘Want to say hi Teresa?’

  Teresa’s hand hovered over the tray for a few seconds, and then hit one of the buttons. It lit up and an electronic voice said,

  ‘Hi. I am Teresa. I am very happy to say hello.’

  I was intrigued by this and wanted to ask more questions, but Alison moved me along to meet the last housemate, who was stationed in front of the television, watching cartoons.

  ‘And this is Sam, who was our baby until Lucy joined us a month ago. He’s a little jealous, aren’t you Sam?’ she teased.

  I was surprised to hear him respond, beginning to assume that all of Chris’s housemates were nonverbal.

  ‘Am not Aly!’ he denied, ‘I’m ten and she’s only six you know.’

  ‘I know, Sam-my-man. Just teasing. A game of basketball after supper?’

  ‘I’ll win, you know,’ Sam informed me.

  ‘Yep. It’s in my job description: lose to Sam in basketball every shift.’

  Sam chuckled.

  When I looked around, Chris had disappeared. I assumed that he must be with Cynthia, since she had also disappeared. So I decided to sit down at the table as Alison had invited. It was kind of weird that someone would just disappear without telling you. Of course Chris couldn’t tell me, but shouldn’t someone else have told me for him?

  Alison had headed back into the kitchen, obviously making dinner. There were three kids parked in various spots in the big room, and only one – Sam, who seemed to be doing anything, even if it was only watching television. I wanted to bring them all around the table, if only to make it seem that we were all having a cup of tea and a chat, not unlike what Grandma and I did when we were together – pretend we were talking.

  I didn’t though. There seemed to be definite, unspoken structure to this house. So I just sat for a few minutes, waiting to be told what was happening next. Then I got curious, and my curiosity overcame my apprehension. I headed down one of the two wide hallways leading from the main room, looking for Chris.

  I found him all right. The first door off the hall was a bathroom with a wide door leading into it, and the door was open. There was Cynthia and another woman lifting Chris, whose jeans were down to his knees, onto a kind of a seat over the toilet. He didn’t see me, but I certainly saw a lot more of him than I had been planning to.

  I quickly stepped out of eyeshot, but not before one of the women helping Chris saw me.

  ‘Be out in a minute,’ she called casually, as if it were an everyday occurrence for visitors to see the occupants of the house with their pants down.

  ‘Looking for a toilet.’ I stumbled on the words of my excuse.

  ‘Yep,’ the same voice replied. ‘Down the other hallway is the staff toilet.’

  I didn’t want to argue that I wasn’t staff, just someone trying to have a normal visit with a friend. I hid in the staff bathroom for a few minutes, completely embarrassed. I couldn’t stay there forever. Besides, even though I felt mortified, it had seemed that nobody else thought I had done anything wrong. So I took up my seat at the table again.

  Eventually, Chris emerged, with the third woman pushing his chair. She parked him beside me, without even saying hi, and then wheeled Lucy away. I just nodded at Chris, not able to talk to him after the bathroom incident.

  Cynthia appeared again, with a tray of small plastic cups filled with pills. She went to the kitchen, where Alison handed her a small dish of yogurt and came back to give Chris the tablets from one cup, each of the five pills in a spoonful of yogurt. She then went to Sam and to Teresa, feeding them medication as well. Now this was normal life to me. Despite still feeling uncomfortable, I almost smiled to think that mine was not the only household dominated by medications.

  ‘Do you want to help me in here, Jo?’ Alison called from the kitchen.

  I was glad to have something to do other than sit with Chris and wait for whatever was coming next, which probably involved taking care of some kind of physical need which I didn’t need to know about. Alison had plates and bowls all over the counter. She was spooning some of the chicken that she had taken out of the oven into a blender.

  ‘Can you put some potatoes on those seven plates please? You’re eating with us, right?’ she asked.

  ‘Yeah, sure.’

  I helped dish up the food, while Alison blended some of everything into mush and spooned it into two bowls.

  Then it was a whirlwind of activity, with five wheelchairs being moved to the table, plates going on the table, assistants tying bibs. Three kids had to be fed, with only Sam and Teresa able to feed themselves, usi
ng special bowls that stuck on the table and adapted spoons to make it easier to get food from the bowl to their mouths. Every able-bodied person, including me, assuming my usual role of assisting Chris, had jobs to do. Dinner here was very different from our private lunch periods.

  Still, with all of the feeding, wiping mouths and moving dishes so they didn’t get overturned, the women working managed to keep up a steady stream of conversation, none of it relating to any of the kids and teens around the table.

  ‘So what were you saying about her dress?’ the woman who had not been introduced to me asked Cynthia.

  ‘Oh, yeah,’ she said, obviously picking up from an earlier conversation. ‘She tried it on last night, after it came back more than a week later than the alterations were supposed to take, and you wouldn’t believe it, Mary – it still isn’t right!’

  ‘No!’ exclaimed Mary. ‘Watch your milk now, Teresa!’ I caught the plastic cup just before it toppled from the table.

  Alison turned to me to explain what the conversation was about.

  ‘Cynthia’s daughter is getting married this weekend.’

  ‘Mary! Mary! Mary!’ Sam interrupted, waving his spoon toward her. Cynthia took his spoon, putting her finger to her mouth to indicate for Sam to shush.

  ‘What’s she going to do?’ Mary asked, ignoring Sam and feeding Lucy another spoonful of mush.

  ‘No choice. It just has to go back again and hope it’s right by Saturday.’

  The conversation continued like this, while everyone was fed at breakneck speed. With all of the activity going on, Chris was thrashing non-stop. It was hard for me to dodge his limbs. I had learned by now that when he couldn’t stop his arms and legs, I would just get as quiet as possible myself, relaxing every part of me and shutting up, and his body would start to slow down too. But it just wasn’t working in this busy place. I wondered if it was always so chaotic.

  After dinner, everything was the same, only in reverse. I wondered what the rush was. After all, it was only 4:30 and there was a whole evening yet!

  I offered to help with dishes and clean-up, as Alison was in the kitchen again, and I thought she might be the best one to ask about what Chris did at home. Since Mary had emerged from a side room with a huge armload of laundry and started to fold it, and Cynthia was busy writing in a binder, Chris and most of his housemates were still parked around the table. Only Sam had been moved. He was in front of the TV again. I moved Chris’s chair to the entrance to the narrow kitchen. His chair would not actually fit in the kitchen, but at least he was close enough to talk to as Alison and I worked at cleaning up the mound of dishes and mess.

  ‘So what is Chris interested in? I know he likes painting, but what else?’ I asked Alison, looking at Chris and adding, ‘Is that okay to ask, Chris?’

  He didn’t smile or give any response to me. He wasn’t looking at me. He didn’t seem to be listening. Ever since we had left school it had been as if he had been unplugged. I couldn’t read his facial expressions; it was as if he wasn’t here with me at all.

  ‘I’m pretty new here, and I only work when someone can’t work,’ Alison said, her brows coming together in concentration. ‘Hmm. In the summer we went to a couple of music festivals and he seemed to like that? And he loves the bathtub, but only if it’s super warm. He hates it when it gets cold! Right, Chris?’

  I hardly had to know how warm he liked his bath water. It wasn’t the usual information one needed to know about a friend.

  ‘How about his family? Do they come and visit him?’ I tried, stealing a look at Chris to see if he was listening. He seemed as tuned out as ever.

  ‘Chris is a ward of the state,’ said Alison. ‘I can’t remember exactly why. It’s in his file. He’s lived here for a few years though.’

  I thought about that. Things might not be easy living with my mom, but at least I had one. Chris had no one. Alison seemed to be the nicest of the staff working here, and she didn’t even seem to know him that well.

  When everything was cleaned up, Alison wheeled Chris over to the television where Sam was.

  ‘I’ll be back,’ she said to Chris. ‘It’s time for Jamie to get out of his chair.’

  The staff never seemed to stop, and yet the kids here seemed to be perpetually just waiting to be handled. I sat with Chris and Sam for twenty minutes, watching the cartoon that was on, while Alison, Mary and Cynthia came in and out of rooms, wheeling Teresa away next, then bringing her back, then wheeling Lucy away again.

  Finally Cynthia came to take Chris away again.

  ‘Chris is going to have a bath now,’ Cynthia informed me. Informed me, didn’t ask Chris if that was what he wanted to do. ‘Do you want to help with that?’

  I must have looked horrorstruck. I felt horrorstruck. I couldn’t believe that she was actually asking me that. I was glad that Chris still seemed to be in a world of his own.

  ‘I think I have to go now,’ I managed to say.

  I had seen enough. I had been sceptical about the prospects of anyone at school being able to get Chris the technology he needed to communicate, but I doubted that the staff here would have time to listen even if he had a way to talk. Here he was a body to be fed, toileted, bathed and medicated. How was being able to talk going to change that? I could suddenly understand why Chris had given up trying long ago.

  CHAPTER NINETEEN

  All I could talk about with Dr Sharon was Chris.

  ‘It’s terrible. I thought I lived in a prison, but Chris can’t even decide when or where to move in his home.’

  ‘You feel you live in a prison, Jo?’

  ‘No, I’m talking about Chris!’ Dr Sharon was annoying me again, trying to put words in my mouth, and not listening.

  ‘So things are fine now at home,’ she stated.

  I felt my stomach lurch. I didn’t want to think about home. Things were fine weren’t they? Never mind that Mom had not spoken a word about her day of sales pitches to libraries and community centres. Maybe she was waiting for people to get back to her. Maybe she wanted to surprise me with her name printed in a calendar of upcoming classes: Books Come Alive: A series of interactive workshops for children 5-12 where we will explore the classic stories of our time in exciting new ways. Suzanne MacNamara facilitating. Sue has a Masters Degree in English Literature and a lifelong love of books. Maybe.

  ‘Mom was a bit quiet over the weekend. But she’s been working hard on her project, so I guess she needs a rest, right?’

  Was I trying to convince myself? Mom had not gotten out of bed on Saturday until four. At twelve, after agonising over whether to wake her up or leave her sleeping, I had opted for letting her sleep. It meant she wasn’t taking her medication on time, but I was afraid that if I woke her up to a bad day, then the day would have to be spent coaxing her out of whatever mood she was in. That could be unpredictable.

  There was hardly any food in the house and I had started to worry about what to do if she didn’t get up the next day either. In the end I thought it was safer to leave her sleeping, while I went for the groceries a day earlier than usual.

  So I had gone to the supermarket, buying as much as I could carry in my backpack and two bags. The whole time I checked my watch and worried that Mom might be up and getting herself into a frantic mood that I might have been able to avert if I had been home. Then I worried that she might not be up yet, and it was getting later and later for her medication, and would that lead to more trouble that night?

  The whole weekend had been like that. When Mom was awake, there were no big dramas, so that was good. It was only that she was so quiet, which had made me nervous, waiting for the storm after the calm.

  In my heart I knew that something had not gone well Friday afternoon. We had met at the bookstore after I had left the group home, and we had gone off to Mom’s favourite little Italian restaurant for dinner. Nothing that day had seemed terribly wrong – except that she had not mentioned a single word about her afternoon. But then, I had not asked h
er a single thing either. I had been too caught up in my own thoughts about Chris and where he lived.

  I hadn’t been able to stop seeing the image of him being lifted onto the toilet, without even the dignity of a closed door. What point was there in Chris being able to say a damn thing in that house? And that made me doubt the people who were in his life at school. Didn’t Mr Jenkins keep telling me not to get my hopes up?

  ‘Something has to change for Chris.’ I emphatically changed the subject with Dr Sharon again. ‘I can’t stand to think of him living with no one understanding, no one even caring! Having to just survive until he gets to school!’

  ‘Is it Chris we are talking about, or you, Jo?’ She infuriated me! Why would she not listen to what I was saying?

  ‘It all could fall apart and you don’t even care!’

  I jumped up and ran out. I couldn’t stay any longer. I felt I was going to explode if I did.

  The house was quiet when I walked in.

  ‘Mom?’ I called out. ‘Are you home?’

  There was no answer, but the light in the kitchen was on and Mom never left the lights on when she went out, so as to save fossil fuels. Funny how she could remember details like that all of the time, yet not be bothered to remember things like paying bills. I had picked up the phone bill from the mailbox and opened it on my way in. It was an overdue notice. Mom hadn’t paid the bill, even though, when it had arrived two weeks ago she had assured me that she would pay it that very day. I had actually believed her.

  I walked into the living room. The room was covered in torn up pieces of paper. Mom was sitting in the middle of the mess. Beside her was a red binder, yawning open and empty. I knew what it meant. That binder had been a familiar sight on our kitchen table over the last month. It used to hold all of Mom’s notes, ideas and planned activities for her series of workshops. Now everything covered the living room floor instead.

  She looked up. I expected that she would be sad, but no, I should have known. She was smiling.