EDITOR’S NOTE: Bruce is a quadriplegic wheelchair rider who for years has worked as an organizer, advocate and peer counselor for disabled people, both in the U.S. and abroad. His experience in advising local groups of disabled people in Mexico and Central America makes him a valued guest at Project PROJIMO. This is Bruce’s account of an interaction he had with Mari, one of the PROJIMO workers, during a UNICEF-funded and PROJIMO sponsored rehabilitation course held in Ajoya earlier this year for rehabilitation workers from all over Central America.
Mari is paralyzed from the waist down from a car accident four years ago. Before her accident she worked full time in a flower nursery. After her accident, she became very depressed and isolated, and twice tried to kill herself. Mari came to PROJIMO two years ago “to learn to walk again.”
Even though the PROJIMO team warned her that if she learned to walk at all it would only be with the use of braces and crutches, Mari persisted and worked hard at the difficult exercises. Following her accident she refused to use a wheelchair, but while at PROJIMO she began to use a lightweight one that the team designed to meet her special needs. Mari became increasingly involved in the day-o-day work at PROJIMO and soon became one of the most important members of the team. She found she could move around faster in a wheel chair, and so learning to walk became less important to her.
Last January, Mari had a flare-up of an old osteomyelitis (bone infection) in the hip caused by a severe pressure sore that developed soon after her accident. This meant she had to spend most of her time lying on her stomach and could no longer get around in a wheelchair. As Bruce describes, Mari went through a difficult period of accepting this new limitation.
The first time I met Mari was the morning I arrived in Ajoya. I had turned right off the main street, gone between two houses and past the pigs laying side by side sleeping in the sun, to the lower street of the village where PROJIMO is located. There were people everywhere, standing, talking or moving about the dusty playground in the middle of the compound. The sun was very bright and made sharp, well defined shadows everywhere.
Since my last visit over one and one-half years ago, the number of buildings had doubled. There was a huge new one-sided workshop with lots of machinery and several workers were busily banging away at wood and metal, almost it seemed, in a contest with each other to make the most efficient noise possible.
Several people stopped me to talk about my trip to the village, and to ask what I had been doing lately. When I was free from talking for a minute, it seemed a good time to go and meet Mari. Back home during the last few months, many people asked me if I had met Mari, and each time an image of this woman kept growing in my head. She would be a strong, dynamic, highly competent, disabled young woman—a paraplegic whom everyone said was becoming a cornerstone of the Program. Someone told me that her room was the first one in the new model house that had been built next to the big new workshop.
As I crossed the dirt yard, I looked at the new model house. It was a narrow rectangular adobe building, maybe 60 feet long, with three sleeping rooms and a large open kitchen and eating area, all facing front. Many people, some in wheelchairs, some walking one way or another, were busily moving about and there was a crowd of bodies packed into the doorway of the first room. I pushed the front of my chair up against the legs of a tall, middle-aged wan who was holding a small boy’s hand. “Con permiso,” I said gently, as though I had every right to be in the middle of that densely packed room.
As my eyes adjusted to the deep shadows of the room after the bright sunlight in the playground, I saw people jammed everywhere in a room maybe 10 feet by 10 feet, furnished with two beds and a couple of small chairs. David sat on one bed examining a small disabled girl. The child’s mother loosely held her daughter on the bed, mostly to prevent her from moving abruptly and rolling off. There were other villagers in the room listening to the evaluation of this young child’s body and how the mother might be able to more effectively involve her child in their home life. Some of the villagers listening also had children to be evaluated and in this way maybe learned new ideas for their own children. But for whatever reason, it was clear their attention was totally focused on what David and the mother were saying.
On the other bed was a young, dark-haired woman. She was lying on her stomach with a sheet pulled up to her waist, busily writing notes about what was being said. There were more people crowded on their side of the room too. I decided that this must be Mari, but that it was definitely not the time to come visiting. Maybe after the consulta would be a better idea. So, without saying anything, I stayed listening a little longer, and then quietly pulled myself back out of the shadows of that crowded room that was filled with energy, and I went back into the hard bright sunlight of the playground.
Later that afternoon I returned. This time, when I entered the darker shadows inside the room, Mari was lying on her side, just as other PROJIMO workers were finishing cleaning and bandaging a large, very deep sore on her buttocks. At the same moment I entered, Flor came in with some papers for Mari to sign. Then a young boy came in asking for change for a large bill. Mari reached over to a box from which she took out some smaller bills. “Hello,” I said. “My name is Bruce.” She smiled and finished counting the money. Then she said, “Hello, my name is Mari.”
Soon everyone left, and we began talking about how long she had been in Ajoya, and how long I would be staying. We talked very easily and comfortably because she had a ready smile. Every now and then when we laughed her eyes would sparkle. Often somebody would walk in and Mari would stop and very efficiently handle their request, her eyes becoming harder and more purposeful. When we talked they seemed to reflect a lighter, more curious spirit.
“I heard that you have a bad sore,” I said. “Yes,” Mari replied. “But it is getting better. I’m taking ampicillin for the infection.” She didn’t seem very worried about it. Being curious, I asked, “How will you participate in the meetings? Will you use a gurney?” “No!” she said emphatically. “Pablo is making me a cushion so I can sit in my chair!”
Now I was intrigued, because good cushion foam certainly wasn’t available here, and her sore was so deep it didn’t seem possible that she could sit without doing herself harm. After more discussion, though, it became clear she was going to use her wheelchair and that was just the way it was going to be. So I excused myself and went looking for Pablo and the cushion he and the PROJIMO team had made for Mari.
Pablo was eager for me to see the creation of different foams, angled this way and that, forming a support for one side of Mari’s body while keeping weight and pressure off the other. I tried it out, and with the ability to feel pain and discomfort that I have, I knew this cushion was not going to protect Mari’s sore.
All too well, I also understood that powerful immobilizing fear of what other people will think of us when we go outside into the streets.
“Pablo, I don’t think this will work,” I said, gently explaining that I could still feel pressure against my bones. “Why can’t she use a gurney for the meetings?” Pablo looked at the cushion, shaking his head. “There is no way Mari will use a gurney,” he said. “She has flatly refused, which is why I was making this cushion. We need her to participate in the classes. She is very important to the Program.'' Pablo seemed convinced. But I said, “She will only hurt herself more and it’s not right for us to help her hurt her body just because she won’t accept using a gurney instead. Maybe it will help if I talk to her about this, and urge her to use the gurney.” Pablo didn’t look hopeful.
I went back to Mari ’s room and waited until there was no one else there so we could talk honestly and without reservation. “Mari, I’ve tried the cushion and it won’t work.” Her eyes wouldn’t accept my words. “You will only hurt your body if you use this cushion and try sitting in your chair.” She buried her head in her arms. I could sense that she knew I was right, but that something else was unsaid in her heart about this. She shook her head and her eyes flashed with fear. “I can’t use a gurney,” she said stubbornly. “I will use my chair, and I’ll move a lot and keep my body off the sore.” I realized that she was afraid but I didn’t know of what exactly. I moved close to her bed and hooked my arm in hers to touch her and show that my seemingly aggressive questions were caring and non-judgmental. “What are you afraid of?” I asked. She didn’t respond, so I tried guessing. “Do you think that you will look strange—more disabled?” She buried her head in her arms, but she held my arm tighter, so I knew it was the right guess. She looked up and nodded in agreement. I paused to think what to do, what I could say that would make a difference.
All too well, I also understood that powerful immobilizing fear of what other people will think of us when we go outside into the streets. This is one of the darkest places in our minds which we are afraid to examine too closely so that we can continue getting through each day. Sometimes there dark fears can be suffocating. We feel alone, trapped in our bodies, convinced that every encounter with another person will be painful for them, for us. We know that people will stare, be curious, and be afraid of the vulnerability we represent. They will avoid us, laugh at us and feel bad for us. But rarely, if ever, will we feel invisible among them, and we withdraw inside ourselves for protection, believing what these fears tell us.
For Mari to go outside on a gurney, even among friends, was another blow to her fragile, recently reconstructed self-image. She believed her fears of what people might think or say, or how they might look at her. She had never left the grounds of the PROJIMO rehabilitation center to visit the rest of the village because her fears told her that she would be strange, different, talked about. Rather than experience this humiliation, she preferred staying where it is predictable, even if limiting.
She told me that just a few months ago she had traveled to Mexico City to present PROJIMO’s work at an international conference, and that two of her closest friends and co-workers had helped her to overcome her fears because they needed her to participate. I figured that if she had had one successful outside experience, maybe she could intellectually see that her fears were controllable.
So I held her arm, because lovingly touching and holding a disabled person is one of the most reas- suring and comforting ways to overcome this fear of rejection. I began talking about my own fears, the dark places in my mind that I have been confronting.
Quietly and intimately, I began. “Recently I have tried to dance in my wheelchair in public places such as a party or night club with a dance band. I am so afraid of how I must look, moving just my arms and upper body. My fingers don’t move so I can’t even use my hands expressively. Yet the way I move to the music feels great and I get so involved in the rhythm and the movement, that I forget people are watching me and my spirit soars so high I can’t help but smile and laugh out loud. The other people dancing see me smiling and see my eyes full of joy, and they accept my dancing with them.
“Yet each time I go dancing I’m always terrified. The darkness of fear swells inside my mind, telling me I’m crazy, it will be a bad experience, and that people will laugh. This fear has never left me. But in time I have learned to control it with the good memories of my dancing, and because my friends who love me give me a lot of support and encouragement. Maybe you can control your fear. Remember Mexico City, you had a good time there, didn’t you?” Mari nodded yes. “The other people accepted you, right?” Again she nodded yes. “So you will use the gurney tonight for the slideshow?” She groaned and buried her head in her arms again. “No, I can’t,” she said. “I will be all right sitting in my chair.” Her eyes pleaded with me to agree that it would be all right to use her chair and not force her to be seen on the gurney.
I realized then that her fear was stronger than any intellectual explanation of how to control it. It seemed best to end the conversation because to continue would have been trying to force her to agree, when I knew that only with kind and gentle persuasion would she feel the support that she needed.
I found Pablo and David outside the new workshop examining the just finished multi-layered cushion. I explained my reservations about Mari using it with her wheelchair. They were concerned, but felt that Mari should be able to try it, especially since she refused to use a gurney. After ore fruitless discussion I gave up and went off to do other things until the next scheduled meeting when I knew Mari would use her chair.
A couple of hours later I went to the patio behind the exercise pool where the meeting was in progress and there was Mari sitting in her chair. I watched for a few minutes. While she was busily writing notes, she was also stopping to shift her weight from side to side, trying to keep pressure off her sore.
The next day at dinner time, Priscilla, who was helping to clean Mari ’s sore, told me that it was now discharging pus and was probably infected. “Do you know how deep that sore is?” she said. “I can stick my fingers all the way in and feel her bone. The bone is totally exposed and now it’s infected. This is very serious. She could die from a bone infection. For her to keep sitting on that sore is plain crazy!”
“Yes,” I agreed. “But what can I do? She’s just too afraid to use a gurney and won’t accept the fact that her sore can threaten her life. That’s in the future. Right now she wants to be in the meetings, so it’s easier and emotionally safer for her not to deal with it now. She can’t feel it and she won’t look at it. No one else knows how dangerous her sore has become and that her refusal to use a gurney will make it even worse.”
Then I thought, why not explain it to everybody? Explain what she is afraid of, that the cushion won’t work and that her sore is getting worse and dangerous! Maybe all together their love for her will not permit her excuses to continue.
As I went back across the playground to her room, I called to Flor and Reynerio to please come also. The room was dark with shadows and people were busy cleaning Mari’s sore. I started explaining the whole situation rather matter of factly in front of everyone, when Roberto walked in and began listening. Roberto is a good friend of Mari’s and had gone to Mexico City with her. He is also the coordinator of PROJIMO.
“…and if she keeps trying to sit on that infected sore, it will only get worse. The cushion doesn’t work.”
Roberto asked, “Mari, why don’t you use a gurney?” Mari’s eyes grew wider. “No, I can’t,” she said. “I’ll stay here in my room!” Flor went over and put his arm around her. “It’s all right,” he said. “We’ll be there with you. No one cares if you use a gurney.”
Mari buried her face while Flor and Roberto continued talking softly to her. They told her it would be fine, that everyone loved her, and that she was needed at the meetings. I felt it was time to leave. Everyone was involved now and Mari wasn’t alone with her fears anymore.
Later that night I came to the slide show and there in the crowd was Mari on a gurney. I looked at her until she saw me and then smiled my happiness at seeing her there. She smiled back. After the slide show finished, I went over to Mari and put my arm through hers. Still smiling, I asked, “Is it so bad?” Embarrassed, she lowered her eyes. “No, it’s fine,” she said. I laughed, lifted her chin up so I could see her eyes, and said, “Good, so let’s go outside to see the movie in the village on Sunday!” Mari’s eyes grew wide while she slowly shook her head. “No, I can’t!”