This post first appeared on Poskod.sg on 22 Jun 2013.
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Two years ago, I came back from a school trip to my sister announcing, “You can be my sports assistant? [Our domestic worker] Yuli cannot get a visa.”
I said yes, because it was almost impossible to find someone else who could leave with just two weeks’ notice. I had just graduated and had four months before leaving for further studies. I also had the privilege of a passport that allowed me to travel freely to Europe without being suspected of having links to terrorism, or intentions of overstaying for undocumented work. Before we went to the Boccia World Championships 2010 in Lisbon, Portugal, I had two weeks to learn the skills of being a boccia assistant.
The only catch: I had never seen my sister play boccia, and I had no clue about the game and what I would have to do.
I thought it would be easy; all I had to do was run around and pick up stray balls. Assemble and take apart her equipment. But what about her personal care: showering, getting dressed, preparing her food, packing her things? It had usually been our mother, and more recently our domestic worker who were almost wholly responsible for these tasks.
I only knew how to take out her books or pencil box when we were in Sunday school together, tap her EZ-link card when we took the bus or MRT together, or find wheel-chair friendly routes or entrances into cinemas.
Game of balls
Boccia is a target game played in mixed-gender singles or in teams (pairs or threes). The aim is to get the most number of your own blue or red balls closest to the white target ball, known as the jack. Each ball that is closer to the jack than the next closest ball of the opponent, at the end of four rounds, determines the number of points and thus the winner.
There are four categories for the game, with the first two reserved for athletes with cerebral palsy. The last two categories are reserved for athletes with a variety of conditions that result in limited control of their upper bodies, such as muscular dystrophy or spinal muscular atrophy. Before each competition, athletes are classified into one of the four categories based on their ability to throw or catch the hand-sized, soft, leather balls.
My sister falls into the third category called BC3, where athletes are allowed to use assistive devices such as ramps to roll the ball from various heights and angles, and head or mouth pointers to hold the ball. As an assistant, I was allowed to handle her ramp and balls during the game, although I had to strictly keep my back to the court, keep my eyes away from the play, ensure I was within the 2.5m x 1m playing box, and not talk or communicate to her during the game.
I had mixed feelings about waiting so long in between plays. On one hand, there was only so much I could see of the other games happening behind our court with a wheelchair in my way; on the other, continuous plays from the other team meant that our opponents were unable to get their ball any closer to the jack than my sister’s ball – she was winning! (At least, in that round.)
I amused myself by watching the game going on in the opposite court, looking at the linesman who penalises players whose wheels or devices are out of the box during their turn, or observing how the opponent sets up his devices and releases his ball.
Caregiving
While I had helped carry my sister to and from her chair, bed, and shower, it had always been with my mother or helper. I had never done it with anyone else, and I had certainly not been left to do everything else myself. When packing various clothes and personal items, I was confident that with my light-travel skills, we would be able to fit everything into one suitcase.
I was so wrong. There were so many items indispensable to her personal and psychological comfort as a para-athlete. Part of sports psychology called for reproducing her daily routine as much as possible in a new environment. This included the same types of soap, shampoo, deodorant, talcum powder and toothpaste; the same cereal drink for breakfast and daily vitamins (and sometimes the contraceptive pill to prevent the hassle of menstruation when traveling). There were bed liners and emergency diapers for the plane ride, in case we didn’t have enough time during the stopover for a toilet break (using the tiny plane toilet was impossible). We also packed lightweight cutlery that she could lift, and a pack of straws for drinks.
After a full day of being with her, I still had to get up once or twice during the night to turn her in bed (to prevent bedsores). Together our morning routine took almost two hours, and we had to factor in that time when getting up for breakfast and early practice. Exhausting!
Most of us go about our daily activities without even thinking about how we brush our teeth or put on our clothes. But for many para-athletes, they need assistance with every little part of their bodies’ actions – some even need constant towels because they cannot swallow their own saliva.
Competition
When we arrived at the competition hall, there was the business of unpacking the athletes’ ramps, which had been carefully disassembled and packed in bubble wrap. Weighing about five kilos, the ramp had to be stabilised with a five more kilos of hand weights during play. Her ramp had two additional pieces to make it longer, when needed to push the ball to almost nine metres away. These pieces were removed each time she took aim, and attached only during play.
My sister tells me to shift or turn the ramp left or right, forwards or backwards, “a little bit” or “a lot”. Then I pick up the ball she chooses and I place it along the ramp. She is the final one to touch the ball, and she releases it accordingly. Then, I adjust the ramp (turn it left and right to change its position from the last throw) and wait for her next instruction.
Competitions were always friendly, and I got to meet different kinds of athlete-assistant pairings: child-father, brother-sister, husband-wife (but no wife-husband yet), athlete-coach. For some countries with well-developed disability institutions: hired assistants paid per day. I was especially intrigued by a married couple who both had cerebral palsy. While the man had more mobility than the wife, both required a significant amount of help from a third party – reconceptualising the idea of marriage for me.
Communication
For those who do not personally know anyone with disabilities, the media is often the biggest influence. For example, television sitcoms that feature a mentally-challenged person usually feature an actor who imitates the spasms and movements similar to cerebral palsy. However, many people with this condition are highly functional and can pursue higher education, with the right facilities. Unfortunately, many people tend to assume that someone with physical disabilities also has mental ones.
I had never met anyone with cerebral palsy before helping out with boccia, and I was never aware of how much this condition could vary. For example, while the other athlete on our team could speak (and so often apologised if she hit us accidentally during her involuntary spasms), many others used customised sign language.
I communicated with one Colombian player for the first time on Facebook chat – he used discreet sign language with his coach, but he could type on a special keyboard (our communication barrier then shifted to my limited proficiency in Spanish). I also met a young man from the United States who drove his chair with the help of sensors around his headrest.
Connections
Since my first initiation into the world of boccia and caregiving, I’ve assisted my sister in two more international competitions in Belfast and Porto. It is heartwarming to see the same coaches, caregivers, and assistants with the same athletes, time after time.
For someone who uses her body and mind as creative expressions and doesn’t think twice about controlling locomotor movements, spending time with my sister as her assistant makes me realise that while I cannot live her life, I could very well do with understanding and remembering this.
--
Two years ago, I came back from a school trip to my sister announcing, “You can be my sports assistant? [Our domestic worker] Yuli cannot get a visa.”
I said yes, because it was almost impossible to find someone else who could leave with just two weeks’ notice. I had just graduated and had four months before leaving for further studies. I also had the privilege of a passport that allowed me to travel freely to Europe without being suspected of having links to terrorism, or intentions of overstaying for undocumented work. Before we went to the Boccia World Championships 2010 in Lisbon, Portugal, I had two weeks to learn the skills of being a boccia assistant.
The only catch: I had never seen my sister play boccia, and I had no clue about the game and what I would have to do.
I thought it would be easy; all I had to do was run around and pick up stray balls. Assemble and take apart her equipment. But what about her personal care: showering, getting dressed, preparing her food, packing her things? It had usually been our mother, and more recently our domestic worker who were almost wholly responsible for these tasks.
I only knew how to take out her books or pencil box when we were in Sunday school together, tap her EZ-link card when we took the bus or MRT together, or find wheel-chair friendly routes or entrances into cinemas.
Game of balls
Boccia is a target game played in mixed-gender singles or in teams (pairs or threes). The aim is to get the most number of your own blue or red balls closest to the white target ball, known as the jack. Each ball that is closer to the jack than the next closest ball of the opponent, at the end of four rounds, determines the number of points and thus the winner.
There are four categories for the game, with the first two reserved for athletes with cerebral palsy. The last two categories are reserved for athletes with a variety of conditions that result in limited control of their upper bodies, such as muscular dystrophy or spinal muscular atrophy. Before each competition, athletes are classified into one of the four categories based on their ability to throw or catch the hand-sized, soft, leather balls.
My sister falls into the third category called BC3, where athletes are allowed to use assistive devices such as ramps to roll the ball from various heights and angles, and head or mouth pointers to hold the ball. As an assistant, I was allowed to handle her ramp and balls during the game, although I had to strictly keep my back to the court, keep my eyes away from the play, ensure I was within the 2.5m x 1m playing box, and not talk or communicate to her during the game.
I had mixed feelings about waiting so long in between plays. On one hand, there was only so much I could see of the other games happening behind our court with a wheelchair in my way; on the other, continuous plays from the other team meant that our opponents were unable to get their ball any closer to the jack than my sister’s ball – she was winning! (At least, in that round.)
I amused myself by watching the game going on in the opposite court, looking at the linesman who penalises players whose wheels or devices are out of the box during their turn, or observing how the opponent sets up his devices and releases his ball.
Caregiving
While I had helped carry my sister to and from her chair, bed, and shower, it had always been with my mother or helper. I had never done it with anyone else, and I had certainly not been left to do everything else myself. When packing various clothes and personal items, I was confident that with my light-travel skills, we would be able to fit everything into one suitcase.
I was so wrong. There were so many items indispensable to her personal and psychological comfort as a para-athlete. Part of sports psychology called for reproducing her daily routine as much as possible in a new environment. This included the same types of soap, shampoo, deodorant, talcum powder and toothpaste; the same cereal drink for breakfast and daily vitamins (and sometimes the contraceptive pill to prevent the hassle of menstruation when traveling). There were bed liners and emergency diapers for the plane ride, in case we didn’t have enough time during the stopover for a toilet break (using the tiny plane toilet was impossible). We also packed lightweight cutlery that she could lift, and a pack of straws for drinks.
After a full day of being with her, I still had to get up once or twice during the night to turn her in bed (to prevent bedsores). Together our morning routine took almost two hours, and we had to factor in that time when getting up for breakfast and early practice. Exhausting!
Most of us go about our daily activities without even thinking about how we brush our teeth or put on our clothes. But for many para-athletes, they need assistance with every little part of their bodies’ actions – some even need constant towels because they cannot swallow their own saliva.
Competition
When we arrived at the competition hall, there was the business of unpacking the athletes’ ramps, which had been carefully disassembled and packed in bubble wrap. Weighing about five kilos, the ramp had to be stabilised with a five more kilos of hand weights during play. Her ramp had two additional pieces to make it longer, when needed to push the ball to almost nine metres away. These pieces were removed each time she took aim, and attached only during play.
My sister tells me to shift or turn the ramp left or right, forwards or backwards, “a little bit” or “a lot”. Then I pick up the ball she chooses and I place it along the ramp. She is the final one to touch the ball, and she releases it accordingly. Then, I adjust the ramp (turn it left and right to change its position from the last throw) and wait for her next instruction.
Competitions were always friendly, and I got to meet different kinds of athlete-assistant pairings: child-father, brother-sister, husband-wife (but no wife-husband yet), athlete-coach. For some countries with well-developed disability institutions: hired assistants paid per day. I was especially intrigued by a married couple who both had cerebral palsy. While the man had more mobility than the wife, both required a significant amount of help from a third party – reconceptualising the idea of marriage for me.
Communication
For those who do not personally know anyone with disabilities, the media is often the biggest influence. For example, television sitcoms that feature a mentally-challenged person usually feature an actor who imitates the spasms and movements similar to cerebral palsy. However, many people with this condition are highly functional and can pursue higher education, with the right facilities. Unfortunately, many people tend to assume that someone with physical disabilities also has mental ones.
I had never met anyone with cerebral palsy before helping out with boccia, and I was never aware of how much this condition could vary. For example, while the other athlete on our team could speak (and so often apologised if she hit us accidentally during her involuntary spasms), many others used customised sign language.
I communicated with one Colombian player for the first time on Facebook chat – he used discreet sign language with his coach, but he could type on a special keyboard (our communication barrier then shifted to my limited proficiency in Spanish). I also met a young man from the United States who drove his chair with the help of sensors around his headrest.
Connections
Since my first initiation into the world of boccia and caregiving, I’ve assisted my sister in two more international competitions in Belfast and Porto. It is heartwarming to see the same coaches, caregivers, and assistants with the same athletes, time after time.
For someone who uses her body and mind as creative expressions and doesn’t think twice about controlling locomotor movements, spending time with my sister as her assistant makes me realise that while I cannot live her life, I could very well do with understanding and remembering this.
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