Rahila Gupta, photographed with her dead son Nihal, aged 17 years. Photo: Christian Sinibaldi for goalkeeperThe grey nuclear, the morning of the day before Christmas in 2001, when I found my disabled son, Nihal, covering still, a spidery network of fine blue veins begin to appear on her cheeks, is a two sharp memory and fuzzy. To live, I had to commit the past in the book: writing has always been my refuge, my way of understanding the world. Thats all I remember what that first year after his death at the age of 17. And crying.
My instinct says that I should put some distance between myself and the material so I decided to write it as a ballad with a particular rhyme scheme and a chorus and a whalebone corset containing form my raw emotions. Prose would be too easy, there would be danger of sentimentality, and I wanted to find a way for my loss to resonate with my readers, because initially I had imagined that it would end up like a book. Even though I knew that the verse was deeply unfashionable as well on the page and the stage, he felt good. I liked the tension between the lightness of the rhyme and rhythm and intensity of the story. So what is the story?
Nihal was born in 1984 after a difficult childbirth which ended in c-section, after which he spent nearly a month in the care unit special baby struggling for life. His kidneys failed, he had fits and he suffered brain damage. He had been starved of oxygen at birth. The hard truth is, as I say in the ballad, it is "born dead/bookends lifeless between. As a result, it was unable to use her arms or legs, sit or bare foot, feeding himself, crawl or even derail because every muscle in his body was tight and beyond his control. The doctor predicted that it would not read or write, that "he is nondescript in a crowd. What he didn't say was that Nihal has cerebral palsy.
In time, I realized that he was intelligent because he said small services, laugh at appropriate times and because he had the bright, curious eyes. I have faced a bitter and lonely fight to prove to the experts that Nihal did had locked inside him, fully aware that they had me cataloged in the senseless and doting language parent category.
I met several mothers, slaving away on behalf of their children, but very few people, men or women, challenged the way the authorities treat cases. Finally, we found the facilitated communication, a highly controversial method, in which we would support Nihal hand as he pointed to a chart QWERTY in A5 hand-drawn. Almost immediately, he began spelling words - I watched with shock and awe. We discovered a little mischievous boy who had a tendency to swear (although I had always suspected his insolence whenever he has cracked laughing when I yelled at her little sister). On the eve of entering the hospital for a major operation, he said he wanted a big red truck with 'Fuck off' written on the side.
That person told was the quagmire prejudices and misunderstandings that we would have to trudge through, that it was quite standard to separate the children in schools with a dizzying array of labels of moderate to severe learning difficulties, I would have to fight every inch of the way for Nihal simply to be treated as a human being disabled. In this struggle, a community of people with disabilities and caregivers came to be my support.
Many people have asked why I did not campaign generally for the equality of people with disabilities. I used to wonder why, given that I had been (and still am) if active in the fields of ethnic politics and sex through my membership in Southall Black Sisters, group of women from Asia based in West London.
As I wrote the ballad, I started to understand. The attempt to rescue the disabled in its long history of grotesque discrimination and the status of tragic victim had switched into a glorification of disability in some circles. It there was no place for me to express my sorrow. I, probably like many parents, could not solve the contradiction to love my child, but wishing her life (and mine) was easier. Surely wanting a central attribute of your child to disappear amounted to rejection? The game allowed me to explore how "disabled and proud" left no space "disabled and angry." I wanted to share the solitude of the parents of a child disabled by the game, so the other parents comforted by the knowledge that they were not alone.
It was only by chance tragic that my ballad became a play. The daughter of a close friend of mine, who also had cerebral palsy, died, his tutor, Director Guy Slater, a theatre and television, was so moved by a poem for his funeral, I wrote that I felt encouraged to show him the ballad that I wrote on and off for nine years. He suggested that put us on the stage. Then we settled on an actor, Jaye Griffiths, which I had been particularly affected by when I had seen her look on the role of a mother in a play by Roy Williams.
In June 2012, not wake: The Ballad of Nihal Armstrong had his first outing in a theatre. I stood on stage hand-in-hand with Jaye, looking at the audience, their faces tears as they gave us a standing ovation standing that seemed to go forever. Whenever it is executed, Nihal comes alive for me.
‧ Do not Wake Me up: The Ballad of Nihal Armstrong is on tour from June 22 at the Cockpit Theatre, London NW8, thecockpit.org.uk; 5-25 August at the gilded balloon, Edinburgh festivalhighlights.com/theatre/wake
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