Donna Thomson, wife of the Canadian high commissioner to Britain and disability-rights pot-stirrer, leads the way up a grand staircase at her official London residence and leaves one life for another.
Below, in the tasteful maple-syrup decor of the reception rooms, she and her husband, James Wright, entertain world leaders, business tycoons and, recently, the Queen and Prince Philip. In the private apartments above, they live with their severely disabled 22-year-old son Nicholas, who has cerebral palsy and is supported by 24-hour attendants, his chronic pain managed with anesthetic delivered by spinal-cord pump.
“Hello, mister,” his mother says, entering the bedroom where Nicholas, in his wheelchair, is watching TV. His room is decorated with souvenirs of his favourite teams, the Ottawa Senators and Liverpool FC. Ms. Thomson asks if he’s bought to tickets to see the England football team play at Wembley; Nicholas, handsome and dark-haired, responds with one of the few words in his vocabulary, “yeah.”
Later that day, Ms. Thomson will leave elegant Grosvenor Square (the U.S. embassy is across the road, Selfridges a coin’s throw away) and manoeuvre Nicholas onto a London bus, the only way to get to the neurologist’s office. The official high commission car (licence plate: Can1) can’t accommodate his wheelchair.
How many of the guests dining on Arctic char and Niagara wine downstairs would know that there is a whole other level to Ms. Thomson’s existence – an upstairs where things aren’t quite so perfect? “Would they know that I have one foot in ICU and one foot in Buckingham Palace?” she says wryly. “It is a very odd life.”
More people will uncover this duality with the publication next week of Ms. Thomson’s book The Four Walls of My Freedom, an account of Nicholas’s life but also a moral, philosophical and economic examination of how we assess the value of a life, especially one that seems, in our price-tag culture, to lack worth. She admits, quite happily, that she wants to turn conventional thinking about disability around and to provoke radical change in a government that has provided such a nice roof over her family’shead.
Nicholas’s motto, his mother says, is “piss on pity,” and it’s likely that she’d have that emblazoned over the historic door at 3 Grosvenor Square, if regulations allowed. After years as a disability-rights campaigner in Canada, Ms. Thomson had no desire to tell her family’s story: “The disability community did not need another piece of misery porn or worse still, inspirational lit,” she writes in The Four Walls of My Freedom. Oddly – for it’s the heart of her book – she didn’t think anyone would want to read about her family’s struggles: How she was once investigated, and cleared, by child welfare for giving Nicholas too much pain medication; how her decision to force him into his wheelchair to go to school every day probably worsened his pain. Speaking about this is the only time she becomes even mildly choked up: “I didn’t want to give up on thinking he could be an active person. … I couldn’t accept it. And now I can.’’
She decided she might have something to add to the debate about disability when she discovered the “capability approach,” a method of assessing the potential of the lives of the world’s poorest, devised by Nobel-prize winning economist Amartya Sen.
“Sen had done a lot of work in exploring the ways in which people can have a life that they value,’’ says Ms. Thomson, 55, after we’d moved downstairs and sat beside a totem pole to talk about her book. “It was an epiphany.”
