Tuesday 13 March 2018


I'm working on a writing project and looking through old notes. Today, I found this fascinating gem from 2011:

Yesterday, I had the most interesting conversation with our son Nicholas. On our to-do list before leaving London are two three hour skype interviews with the Ontario Ministry of Community and Social Services. These interviews are part of their process of assessment for social care funding. To prepare, I did a little research into the type of questions they might ask Nicholas and I found this example: "What do you think other people like best about you?" Nicholas uses a partner-assisted scanning system (I'm the partner and I ask him to choose from lists of words, like '20 Questions') to communicate and it's slow going. But having an existential conversation with Nicholas is worth the wait. When I asked Nick what he thought others liked best about him, I was surprised and intrigued by his response. "Different" he chose from a long list of adjectives. "You mean your disability?", I asked. "Yeah", he said. "So, you think that people like you because of your disability, because you are different?" "Yeah." Still wanting to explore this idea, I queried "what is it about your disability that you think people like?" "Still (opposite of moving)" was Nick's reply. "Wow, I think you're right", I told him. "You are a great listener. You don't run off when people are talking to you. You are very perceptive," I said.
It is absolutely true that some people like Nicholas because he is different – his disability melds with his winning personality in ways that certainly get him a lot of attention. And I think people do appreciate his stillness. I do. Throughout his life, Jim and I have tried hard to help Nicholas see the upside of a life such as his. "Never underestimate the benefits of a really severe disability", I've said when we've queue-jumped at Disney World or received funding (after a long advocacy struggle) for one to one nursing care. I feel gratified that Nicholas sees himself as having assets that are unique - and he is clear-eyed about those qualities that make him a likeable and interesting person.

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