This is an interview that I did with Louise Kinross, Editor of BLOOM, a magazine for parents of children with disabilities from the Bloorview/MacMillan Centre in Toronto. To read more from Louise or subscribe to BLOOM, click HERE.
Friday, February 11, 2011
In Donna's book, a good life=loving relationships
In The Four Walls of My Freedom, Donna Thomson recounts life raising her son Nicholas, 22, who has cerebral palsy and requires 24-hour care. Donna is married to James Wright, the High Commissioner for Canada in the UK, and has a daughter, Natalie. Donna generously shares her thoughts on how one can find freedom, choice and wellbeing within any set of life circumstances, including severe disability.
BLOOM: It struck me how you moved from one medical crisis to another with Nicholas early on. How did you personally stay afloat?
Donna Thomson: As women I think we’re socialized to expect that any capable person should be able to cope with any circumstances their baby presents with. I was so exhausted but I thought I should be able to cope. It took me a long time to put up my hand and say ‘I am seriously not able to do this.’ When my daughter was born I knew I needed practical help, and I realized that the only way I was going to access help through government programs was to be dramatic in the language I used. I realized words like ‘family breakdown’ and ‘drowning in my son’s needs’ got attention. I think using that language strategically to get funding helped me understand my own limitations. There wasn’t any question that I wasn't actually drowning. I just hadn’t admitted it yet. It was a while before I found some peer support because this was in the days before the Internet. Family and friends introduced me to people they knew who had a child with a disability and I realized that my church could also be a place of acceptance and belonging.
BLOOM: In your book you talk about others judging you – in how you were caring for Nicholas or whether you did something to cause his disabilities. Why do parents of children with disabilities feel so judged?
Donna Thomson: The moment your child is diagnosed with a disability, they become public property. It’s not the same with an able-bodied child at all. Professionals have a say in how you feed your child, how you hold your child, the kinds of activities you do with your child, and what you allow your child to do or not do. You’re judged on these things absolutely.
BLOOM: I identified with this quote: ‘I remember thinking that modern medicine and the power of love could beat the effects of cerebral palsy. How wrong I was.’ What is it about our culture that leads to the perception that people can ‘overcome’ disability?
Donna Thomson: I think it has to do with the notion of independence as being the core value of our society. There is a great aversion to dependence. I think when you put the individual at the heart of society, as opposed to the family or community, then it’s a natural outcome that you think you will be able to manipulate nature. It’s man over nature, it’s that arrogance that we hold that you would be able to change something that is utterly natural. I would never advocate not doing therapy with our children because we want to enable their potential. However, I think because we define a successful life by independent function – you want your child to live on their own and be employed – we never talk about the ones who can’t aspire to that. The question at the heart of Western society that worries me is that people who will never be independent or employable are not worth supporting. Why would you support someone who could never give back to society what they consume? They’re abandoned.
BLOOM: Does the concept of overcoming disability help explain why good services in childhood evaporate when a person becomes an adult?
Donna Thomson: I think that is true. I also think that policies and supports and funding mechanisms for disability in our society are not set up for the first generation of people with more severe disability who survive into adulthood. Everything has been geared to pediatrics, assuming that people will die before their 18th birthday. And the perpetuation of that idea has been good for children’s charities.
BLOOM: Why as parents of children with disabilities must we redefine happiness and achievement?
Donna Thomson: I think because there’s a lot of interest in wellbeing these days. I think that a lot of people are beginning to realize that having wealth and position in society doesn’t make you happy if you can’t convert your wealth into good living. And what is good living? Good living can be quantified by your loving relationships. I think there are many people who are realizing loneliness and isolation is something that is a contemporary scourge. What our children need in terms of their support is company, and to be with other people. And what our children need is what society needs. When I talk to the people who have cared for Nicholas or been friends with him they say they have been transformed in a very positive way by their relationship with Nick. I think that to a large extent we in contemporary society have lost the knack of neighbourliness that we used to have in more rural communities. And if we put our children at the heart of the idea of neighbourliness, we can use them as a lever to create a new kind of urban contemporary neighbourliness. I’m a big fan of personal support networks and how they benefit everyone in them.
BLOOM: What is the Capability Approach?
Donna Thomson: The Capability Approach is an idea about how people can function well within circumstances of adversity. It’s to do with the factors that allow a person the freedom to make choices to have a life that they value. Amartya Sen wrote about it in the context of extreme poverty, talking about the types of freedoms people need to have the basic level of functioning that allows a person to have human dignity. He was interested in minimum levels, but because I’m a very middle-class person, I want to use the Capability Approach to look at maximum levels of flourishing. I want to know what are the supports and services and policies that will enable Nick to have the freedom to make daily choices to have a life that he values. Rather than to be spoon-fed programs he doesn’t want.
BLOOM: You note that Nick spends most of his time in bed, yet experiences the world richly. Can you explain?
Donna Thomson: Nicholas has a big screen TV in his room connected to a computer in Canada that enables him to watch Canadian TV. He watches the CBC News and Hockey Night in Canada. He’s very interested in hockey and can watch all of the NHL games if he wants. He writes a hockey blog. He does all of this with a lot of assistance. He uses a communication program on an iPad with his helpers. He also has facebook and hotmail and he’s a seller on eBay. He has great friendships with his carers and remains friends with them when they leave.
BLOOM: Many parents of children with complex medical needs struggle to get the supports they need at home.
Donna Thomson: I think the issue of 24-hour care is an urgent concern for governments. Part of the public discussion we need to have is about a global or national ethic of care that we believe supports human dignity. How many baths does a person need per week, and is it okay to leave a person alone in a room in a facility for two, three, four hours? What’s the cut off? We need to actually make those decisions about what is the kind of care we expect for someone we love if we drop dead tomorrow and they become the responsibility of the state. Then we need to figure out what’s the responsibility of the government, national and provincial, and what is the responsibility of the community, the family and the individual. When making these decisions, I argue we should always think about how we can maximize human freedom to have choice and wellbeing. My guiding principle for policy making and funding is that it be ‘most supportive and least restrictive.’ That, of course, is most expensive.
BLOOM: How can we financially support these services?
Donna Thomson: Given this is the first generation of people with severe disabilities who will outlive their parents, we have to look at how we can mobilize communities to work together to enable a good life for all. This is an international phenomenon and an international concern. In Japan they’re doing a system where if you volunteer to help the elderly or disabled, you get ‘time credits’ you can claim when you need care yourself later in life. Lots of people are looking at models of dealing with an aging population and people surviving with high needs. In the UK they’ve had great success with shared housing that is a bit like fostering a child. You’re paid a bit to take into your home someone who has a developmental disability. We need to look at how we can incentivize care. Most of the volunteers in today’s world are over 50. How do we get people, particularly of the younger generation, looking after one another – volunteering, befriending? All of these activities are good for society.
BLOOM: The Capability Approach is at odds with Western perceptions of what constitutes a good life. How can we change attitudes?
Donna Thomson: I think adversity is the mother of invention, which is one of the reasons I was so taken with the Capability Approach. It comes out of the slums of India. I think the recession is going to be a good thing, in a way, for people. In the UK the recession has hit much more strongly than in Canada. As a result, you will have people forced to live in communal housing. One of the things that’s made our communities such lonely places, particularly for vulnerable people, is the idea of individualized housing. Put someone in their own apartment and they’re supposed to be fine. I think to the extent which we can pool resources and living space and financial resources, and where we begin to have multi-generational families again, that is going to be good.
BLOOM: In the book you mention a time when Nick rates himself low in the area of meaningful work. How can parents maintain their children’s self-esteem when they’re not able to do paid work?
Donna Thomson: That’s a really tough one. It’s very natural and deeply human to want meaningful work in your life. And it’s also deeply human for Nicholas to want a girlfriend. And some of these things may not happen for him. So the job of the people who love him is to help him understand what his reality is, to help him make peace with his limitations, and to help him aspire to his dreams.
BLOOM: What are Nick’s dreams for the future?
Donna Thomson: A girlfriend is probably his number one dream. And that’s probably the most difficult one. He’s looking forward to moving back to Canada and getting season hockey tickets. We’ve talked about him moving out of home and I think he’s starting to get quite interested in that new phase of his life.
BLOOM: How can parents of children with more complex cognitive or communication difficulties assess whether they’re leading the life they choose?
Donna Thomson: It’s very difficult to do. But the people closest to that person will have a strong gut feeling and a deep, fundamental knowledge of that person and if they’re happy. Sometimes comfort is happiness, and things that are very humanly basic, like touch and intimacy in terms of singing and sound. That’s why Snoezelen is so good. We know when our children are enjoying those kinds of physical and spiritual comforts and that is happiness.
BLOOM: Should families use the wellbeing index you used?
Donna Thomson: If you have a strong interest in trying to understand your life and to make it better, the index is helpful.
BLOOM: What key policy changes are needed to give people with disabilities more freedom to choose their lifestyle?
Donna Thomson: A saving mechanism is very important and we should be helping our vulnerable young people to have a savings plan. We have the RDSP in Canada. Couple that with whatever communities can do to incentivize and support networks of support to help someone have a good life in a coordinated fashion, so that it doesn’t fall on the shoulders of one person. People talk about distributed justice. This is a sharing of those responsibilities. At the heart of those levers for a good life is the understanding in society of the worth of a life that is very different, and that dependency is not a bad thing. We all are dependent or will be in our life. Something we need to teach people is how to receive care. I would love to see a Grade 2 class of children sitting in pairs. One sits on their hands wearing a blindfold while the other feeds them. And then they trade places. We need to receive care with the same grace and dignity that we teach children to give care. There are still a lot of people who talk about if they get in a catastrophic car accident and need to be taken care of, ‘just pull the plug.’ That’s because they don’t know how to receive care.
BLOOM: You talk about public/private partnership to support those with high needs. What is an example?
Donna Thomson: I would be interested in looking at funding Nicholas between several ministries. That is a ‘no-no’ currently. I would be interested in having a government program that has to do with digital inclusion contribute to Nicholas’ technology in his room. Perhaps the Ministry of Community and Social Services could fund some part of his leisure activities. And the Ministry of Health could fund needs that are carried out by health-care professionals. That leaves the task of who’s going to pick up the iPad and change the TV channels and talk with him. He can’t do anything by himself. That is, I think, where we have an opportunity to engage the community. For example, I used to get kids from Nicholas’ high school to fulfill their community service hours by coming by to play Playstation with him. That’s how I got them there, but then they became his friends and kept coming after they’d done their service hours.
BLOOM: What can others learn from our caring experiences?
Donna Thomson: I think what others can learn is intimacy and grace. I think when I talk about receiving care well, our children are great teachers. And I think this is a very important lesson for the rest of society. I also think people can learn to listen by befriending someone with a disability. I have learned all of my listening skills from Nicholas. I am a very careful ‘whole body,’ ‘whole soul’ listener. It makes me have a much richer life.
BLOOM: How have you changed as a person as a result of raising Nick?
Donna Thomson: I think I’m not so afraid of death as I used to be. Because Nick has had many near-death experiences. I’ve worried so long about him dying, then all of a sudden I started worrying about him surviving. I’ve thought about death an awful lot. If you read guides to happiness, or to making peace with yourself and having a sense of contentment, most of them say you have to come to terms with your own mortality. I think the experience for me of having Nick has enabled me to do that. I’ve given a lot of thought to what it’s like to walk through the unknown because I never know what’s going to happen from one moment to the next. I had to reconcile myself to the unpredictability of life and that I wasn’t in control. I think that has made me have a greater capacity for joy and happiness. I also think we have to make a choice to try to understand our most difficult experiences in some kind of a meaningful, even positive, light. So, I think that’s a choice. Because otherwise we would remain bitter, and some people do. I choose very strongly not to be bitter. I love my son and he loves me and we laugh our heads off all the time.
BLOOM: Sometimes I think there is a tendency for us to keep our lives private, because they are so different from the mainstream. Did you feel that way before writing the book?
Donna Thomson: It was the Capability Approach that gave me the idea that sharing our experiences was important. Because if someone from the slums of India can have a good life with their hardships, through this idea, then I’ve got something to say about how we can have a good life. And all of a sudden my experience as a mother and Nicholas’ experience and that of our family have real importance to the discussion about what kind of a country we want to have. I really hope the book gives meaning, relevance, importance and dignity to people’s personal experience… but also to us as a whole group who are raising children with disabilities.