Magazine article The Human Life Review

Singer and the Song

Magazine article The Human Life Review

Singer and the Song

Article excerpt

My thirteen-year-old daughter eats very little. Moy Moy is nearly five feet tall and weighs only fifty-six pounds. For the last eight years, Moy has been regressing. Her developmental age is now that of a four-month infant. Part of her condition (a neurological degenerative disorder) is a slow dis-coordination of the muscles needed to chew and swallow, so that, although she wants to eat, the effort is simply too much for her.

It is one of life's little ironies that I read the article about Professor Singer's encounter with Harriet McBryde Johnson this week, while my husband and I are trying to decide whether the time has come for Moy to undergo a gastrostomy-a surgical procedure to insert a tube directly into her stomach so that we can continue to feed her now that she can no longer feed herself. Professor Singer would have no trouble making the decision.

Or so he thinks. Professor Singer doesn't know Moy Moy.

Based on the facts-she cannot walk or speak or do anything whatever for herself and she seems to have no self-awareness-she would probably qualify for his definition of a waste of space. Our taking care of her is, in his words, "a little weird."

But, as I say, he doesn't know her. He couldn't guess that her presence in our lives has transformed us, that she has brought us close to people we would never have known and now cannot think of life without. He couldn't imagine her magnetic charm, her delightful, adorable nature. He couldn't know that because of her, a school has been created in India which takes care of the needs of hundreds of children with special needs, employs nearly forty people, generates millions of rupees in donations and creates awareness and a sense of community in a way that no ordinary school ever could. She is a mini-Empire all on her own.

He also didn't know Shivani, one of Moy Moy's classmates. Shivani died last month, of starvation brought on by depression. Shivani had a severe mental and emotional disability. Her behaviour was erratic and often violent and she created chaos in her family. They were very poor and a year earlier, her father, an unemployed tailor, also suffering from depression, had committed suicide. Shivani was deeply attached to him and had been unable to adjust to life without him. She stopped eating gradually and slowly wasted away.

I tell both stories to make the point that, as Ms. Johnson insists, "disabled lives are not subject to debate." Moy Moy is beautiful, easy and appealing (and well-off) while Shivani was beautiful, intensely difficult and poor; neither of them, however, need to justify their right to exist to Professor Singer, any more than he needs to justify his to me. His views offend me, but I don't plan to suggest he be killed because he holds them.

In spite of his intelligence, Professor Singer has a limited understanding of the world and, it seems, little imagination. He has no idea of what the world would be like without Moy Moy and Shivani. None of us does, really, but those of us who, like me, once had only a peripheral understanding of disability and now have it as the centre of their existence, can testify to the before and after phenomenon with some authority.

My own "quality of life" has improved dramatically since Moy Moy's birth, and not only because of the difference she herself has made to me, but also because of the many other people with disabilities I have met through her. I live differently now. I think I am a better person.

I agree with Ms. Johnson that people with disabilities are not here to provide awareness training to the rest of us. They are not here to inspire anything either: not love, not a sense of gratitude. Like the rest of us, they are just here. But, also like the rest of us, sometimes their presence does inspire: love, gratitude, generosity, kindness. I do not think I am being sentimental when I say that people with disabilities inspire, on average, more than people without. …

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