Caring for a dependent loved one is a chaotic business. There isn't much time for reflection, let alone laundry and grocery shopping. I'm always thinking, "If we can figure out a framework for planning our days, then maybe life would be a little easier." Some of those frameworks I've talked about before are Amartya Sen's Capability Approach (I used this approach in my book, The Four Walls of My Freedom to analyze what kind of help was helpful in our family) and the F-Words of Disability (a wellbeing framework designed for children with disabilities, but it works for anyone). Today I want to introduce an idea that I borrowed from the community development work of Cormac Russell and John McKnight at Nurture Development and the ABCD Institute, respectively. McKnight and Russell talk a lot about enabling marginalized communities to escape cycles of dependency by systematically supporting the sharing and talents and gifts of people in order to address their own challenges within neighbourhoods. The Asset Based Community Development movement developed the 'To, For, With, By' framework as a way of understanding how social services work in ways that are often oppressive. But today, I want to borrow this framework and think about it another way. As caregivers, we often do things 'TO' our loved one, especially in the case of cognitive impairment. Sometimes we dress our loved ones even when they don't want to get dressed or we guide them into a bath and shampoo their hair. Certainly in our family, I've given medications and tube feeds while our son didn't miss a beat watching his favourite show on TV. There are many things we need to do TO our loved ones and they need us to do to them. Sometimes these actions are negotiated - our son told me that he doesn't want to be consulted on his medications - he just wants whomever is helping him to get on with doing it 'invisibly'. And caregivers spend a lot of time doing things FOR our loved ones. "Here, let me do that for you": that's what we say when we see someone making an effort to reach a magazine or to put on a sock. It's an empathic reaction to assist when asked to help in one way or another. Then there are the times we perform chores or engage in activities WITH our loved ones. I loved to arrange flowers with my Mom and I love cooking with our son. I smile when I think of being absorbed in an activity that we enjoy together - these are the delicious moments of caring for someone who is loved. The hardest nut to crack though, is BY. In my caring life, what are the activities that I've helped my Mom and our son to do by themselves? How have I managed to help them achieve independence? Can I be doing this more and have I slipped too easily into doing TO and FOR instead of WITH AND BY? I'm going to think this over and seek opportunities to balance these aspects of caring. And I'm going to ask our son if he is happy with the balance. I'll report back on that conversation.
Yesterday I presented at a Carleton University conference titled 'More Than Getting By: Putting Daily Life at the Heart of Our Struggles'. I was one of the few non-academics - most were scholars in the areas of political economy, women's studies, sociology or social work. My session was titled 'The Costs of Care' and presenting alongside me was Mary Jean Hande who talked about 'Survival and Resistance in Austere Times: Care Work, Disability Justice and Revolutionary Praxis. As well, Anna Przednowek talked about 'Caring for the Carer of Adults with Intellectual Disabilities: A Policy Anomaly'.
It was fun. Talking about the deeper meanings in our personal lives, especially delving into the hardest challenges and placing that experience within the context of philosophy and economics is my idea of a good time. The general thrust of the morning was 'how can we think about care so that families are supported by their communities and by their country?'
My topic was 'The Capability Approach - A Policy Lens for Extreme Caregiving'. Here's what I said:
I am an extreme caregiver and what I have learned is this: trying to keep our son alive while maintaining my own physical and mental health was an impossible task when I tried to do it alone. One of the greatest sources of my personal stress was trying to negotiate with service providers to access what little help was available - help that wasn't really what we needed in the first place (but it was better than nothing). I had to find a different policy tool that would enable families to be supported in ways that suited them, given their givens. What I found was Amartya Sen and the Capability Approach.
Amartya Sen won the Nobel Prize in Economics in 1998 for his development
of the Capability Approach, a tool to assess freedom and wellbeing within
circumstances of extreme poverty. In his
Nobel address, Sen said, “The Capability
Approach sees individual advantage not merely as opulence or utility, but
primarily in terms of the lives people manage to live and the freedom they have
to choose the kind of life they have reason to value.
The basic idea here is to pay attention to
the actual “capabilities” that people end up having. These capabilities depend both on our
physical and mental characteristics as well as on social opportunities and
influences (and can thus serve as the basis not only of assessment of personal
advantage but also of efficiency and equity of social policies.” (Nobel Prize Address, 1998)
For me, Sen’s
Capability Approach represents a lens through which I can assess the value of
my life, understand my choices in relation to programmes, services and policies
that affected us throughout our son’s life.Sen speaks of the “freedom to live the life you value and have reason to
value”.I had a life mapped out for
myself before Nicholas was born, a life that I imagined I valued.The circumstances of our family life with
Nicholas forced me to reconsider my values and my reasons to hold those values.
Amartya Sen has focused on issues relating to poverty and justice, but
he has also spoken about disability. At
a World Bank Conference on Disability in 2004, Sen lamented the failure of
theories of justice to adequately address the issue of disability. In his keynote speech at that conference, Sen
explored the relationship between wealth, disability, freedom and justice. “Wealth or income is not something we value
for its own sake. A person with severe
disability need not really be judged to be more advantaged than an able-bodied
person even if he or she has a higher level of income or wealth than the
thoroughly fit person. We have to
examine the overall capability that any person has to lead the kind of life she
has reason to want to lead, and this requires that attention be paid to her
personal characteristics (and this includes her disabilities, if any) as well
as to her income and other resources, since both can influence her actual
capabilities. To ground a theory of
justice on the informational foundation of opulence and income distribution
would be a confusion of ends and means:
income and opulence are things that we seek “for the sake of something
else” (as Aristotle put it). (Keynote Speech, Second International Disability
Conference, World Bank, 30 November – 1 December 2004. See www.worldbank.org)
Here, Sen is
distinguishing between “earning handicaps” and “conversion handicaps”, or how
one is able to convert money into good living.
Giving someone with disabilities, or their caregiver a million dollars
doesn’t give them a good life if the money stays in the bank and the individual
sits at home unable convert his riches into enjoyable living. It is easy to see why, for people with
disabilities and their families, this line of thinking is extremely helpful in
understanding how anyone giving or receiving care can begin to identify and
exercise practical choices that nudge individual circumstances toward a life
that one values and has reason to value.
Policies that enable people to exercise their capabilities, such as
individualized funding, and accessible public transportation, for example, help
people to exercise choice and experience life satisfaction.
In our family, I
wanted to be good mother and I wanted to be supported in that role. But the demands on me resulting from Nick’s
disability combined with the demands of the medical, social and educational
systems conspired to make me feel overwhelmed and desperate. The support systems that did exist seemed
designed to support themselves, rather than Nicholas, me, and our family.
Our family
survived, but only because of perseverance, a solutions-based approach and
innovative and willing community partners who partnered in our advocacy
efforts. I would say that our family
remained intact by the skin of our teeth.
We are the embodiment of the saying ‘what doesn’t kill you makes you
stronger’. But we should never have had
to fight so hard in isolation to achieve what most people call normal. In my opinion, the Capability Approach is a
good place to start in redesigning a policy framework to support children and
adults with disabilities together with their families giving care.
Recently, I gave an interview to Kris Bone, a writer with the Puritan Magazine (a Canadian literary journal). Here's his article about my book, "The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving" (House of Anansi Press, 2014). My book is available everywhere in Canada and for pre-order in the USA via all major booksellers.
An Interview with Donna Thomson, Author of The Four Walls of My Freedom
Donna Thomson on Being a Caregiver of Disabled Individuals // Kris Bone
Donna Thomson and her book, The Four Walls of My Freedom (House of Anansi)
When it comes to Canadians with severe disabilities and the people who care for them, a suspicious opacity surrounds them in the public consciousness. Fundamental misconceptions about the nature and benefits of the relationships between people with disabilities and their friends, families, and caregivers—as well as underestimations of the immense cost and work that go into providing adequate care—act as impediments to positive change. That is exactly why a book like Donna Thomson’s The Four Walls of My Freedom(House of Anansi) is such an important one: it gives readers access to all facets of the life of a caregiver, even the ones we’d rather not think about. It also reminds us that in omitting to think about these issues, whether intentionally or not, we are doing some of the most vulnerable people in Canada a dangerous disservice.
To approach the importance of Thomson’s book in a slightly different way: there is one incident relayed in the text that has stuck with me since reading it months ago.
During a panel discussion at Stony Brook University in 2008, philosopher Eva Kittay was posed a question that, in her own words, induced in her “a feeling of nausea.” As a staunch defender of rights for those with disabilities and as the mother of a woman with severe cognitive disabilities, Kittay was asked to speak to the “morally significant” ways in which the profoundly disabled are “superior to pigs or dogs or animals of that sort.” Kittay proceeded to give her audience a glimpse into the complex relationship between her and her daughter, and the relationship between any disabled person and their friends and family: “There’s so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile … there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer.”
Eva Kittay, staunch defender of rights of persons with disabilities
Kittay’s answer speaks to the need for accurate and available representations of the lives of people with disabilities and their caregivers if any sort of understanding is to be achieved. Thankfully, this is exactly what Thomson’s The Four Walls of My Freedomprovides.
In 1988, Thomson’s son Nicholas was born with cerebral palsy. The Four Walls of My Freedom grew out of the ensuing struggle that Thomson and her family endured in trying to provide both a full, dignified life, and adequate care for Nicholas. If The Four Walls of My Freedom was only a predictable book about one family’s difficulties, though, with a Hollywood-friendly happy ending, it wouldn’t nearly be so powerful a narrative. The real strength in Thomson’s text comes from two sources: the first is her frankness. Thomson does not hesitate to call attention to her own faults, insecurities, and mistakes. Navigating Nicholas’ needs is a job more than any one person, mother or not, could be expected to handle, and Thomson does an admirable job of framing the magnitude of what she, and all those in her position, are up against. It is not the story of a super-mom and her amazing single-handed victory over the opposition; it is a story of small victories and a lifetime of learning how to meet the needs of her son, and of all Canadians with disabilities.
The second strength is that the content of the book does not limit itself to just the story of Thomson, her son, and their experiences. Thomson dips into various other theories and approaches to caregiving throughout, while also drawing parallels to issues like eldercare*. The book’s subtitle, “Lessons I’ve Learned from a Life of Caregiving,” is almost deceptively narrow when alluding to the content of the book—more than just lessons learned while providing care, the text contains lessons from a life spent researching and considering caregiving, much to the benefit of the reader. Drawing on material from thinkers like Nobel Prize-winner Amartya Sen (whose “capability approach” plays a major part in Thomson’s personal philosophies) or the aforementioned Eva Kittay, the book is complex and multi-faceted, and uses an effective blend of the personal and the theoretical to bring the uninitiated reader up to speed on caregiving.
The Four Walls of My Freedom is a hopeful book, but it is a book that tempers a hopeful outlook on Canadian attitudes on disabilities by underscoring it with the absolute necessity of greater awareness. Thomson makes it clear that Nicholas is not someone to be pitied—but he does have needs that need to be met if he is to participate as an equal citizen. Thomson makes an important distinction, a la Amartya Sen, between equality and equity, between a medical model of disability and a formulation where personal freedom and happiness is the goal. If nothing else, this book performs one of the most important functions of any writing: it helps us to understand the lives we don’t lead.
As part of a group of editors and writers who often put a lot of thought into what it means to encourage diversity and equality in the work we write, read, and publish, I thought it would be an enlightening experience to ask Donna Thomson a few questions about the writing of her book, and about her life as a caregiver. The following interview was conducted via email during the Spring of 2014.
Kris Bone: Donna, much of your book, The Four Walls of My Freedom, deals with the struggles that you and your family underwent both to acquire suitable care for your son, Nicholas, and to find a measure of balance in your lives while managing your dual roles as loved ones and caregivers. The material feels particularly intimate, and you certainly don’t shy away from the tougher realities of having a child with disabilities—a seemingly endless schedule of surgeries and medical emergencies, a never-ending search to find the best care for your child (be that medically or academically), and the infinite number of adjustments and accommodations that your family has fought to make in order to ensure that Nicholas can experience the world as an equal citizen.
In some previous interviews, you mentioned that even discussing your experiences with neighbours or friends was all but impossible because they simply could not relate to the things you were going through, and that the experience became very isolating. Was writing this book, then, a liberating experience, or was it more difficult to find the words?
And now that you’ve given talks about your experiences, how has the response to the book been? In the talk you gave at the MaRS center here in Toronto in March, there were many people in the audience who seemed to express a similar sense of isolation and frustration surrounding the way our society treats caregiving and disability. Have people been supportive of your narrative, either within the disability community or outside of it? Have there been negative reactions to your book?
Donna Thomson: It’s true that caring for Nicholas (who was in nearly constant crisis) as well as for my daughter was isolating for me. My life was very different from other peoples’, and when someone continues to be ill or in pain over time, friends and family feel helpless. By the time Nick was a teenager, I felt that I had nothing interesting or pleasant to say to anyone. Nick’s health had stabilized somewhat when I began to research the book. At that point, I was searching for meaning—the meaning of my life experience, that of Nicholas, my husband Jim, and our daughter Natalie. I thought perhaps I had found an idea (Amartya Sen’s “Capability Approach”) that might give our lives meaning and might define us as equal members of society, rather than outsiders. For me, the philosophical ideas of what constitutes moral personhood and a ‘good life’ were really, really compelling. The ideas I was exploring helped me understand a new way of seeing dependency and how our society can be organized to support us. That was not liberating so much as thrilling. It was like finding a treasure. I didn’t want to simply tell our story—I wanted to use snippets of our story to talk about dependency and care from birth to death, across abilities. I wrote about the ideas first, and then reviewed my memories to find family anecdotes that would illustrate my points. Often, I wrote in the middle of the night—that’s my creative time.
You asked how families have responded to my book. I have had many letters and messages from parents. I am always so grateful when readers take the time to share their experience of my book and tell me what it means to them. Most readers tell me that they found my book mirrored their own experience of relentless caregiving, sleepless nights, and loneliness as well as the intimacy and joy that dependency work inevitably brings. Some parents worry that they cannot feel the hope that I express, especially if their son or daughter has a degenerative condition.
My conversations with families south of the border reveal a cultural difference in values about care. Many U.S. parents feel that ‘families should look after their own’—they are mystified by my assertion that the government should have a role in supporting citizens with care needs. And yet, they too are overwhelmed, so we have many day-to-day experiences to share. Some family members who write to me are caring for elderly parents suffering from Alzheimer’s or other forms of dementia. Like me, they are trying to come to grips with the complicated ethics of asking for and receiving help. They seek conversation with someone who has shared something of their experience. There have been one or two negative reactions to the book (there may be many more, but those readers haven’t told me)! I have heard from some parents that my book was too ‘political’—that it wasn’t simply the story of struggle and redemption in disability parenting they hoped for. On one occasion (this was at the event you attended), a parent worried that my story was not inclusive of the experience of families living with poverty or the challenges of being from a visible minority. My book does not resonate with everyone!
KB: In the very first chapter of the book, you mention that when Nicholas’ test results were first returned and you were informed that your son was severely disabled, you felt “a lightness, a sense of relief and purpose,” because you felt that at least you could increase your own knowledge of the conditions Nicholas was living with—and thereby help him “grow into somebody perfectly perfect.”
In those first months, what sort of material did you find that dealt with family life and disability? Outside of functional medical information, which resources did you draw from? Did you find that there were sources that prepared you for the reality of life with a child with disabilities, or were narratives like that harder to come by—and are there any things you wish you could have known then that were not available to you?
Donna Thomson: In the early days, I remember finding two great resources that helped me move from a state of despair and paralysis to positive action: the first was information about a therapy called Conductive Education. It wasn’t the therapy per se that was so heartening; it was the feeling that there was something I could teach Nicholas that could help him overcome the effects of his disability. The other resource was a book by Helen Featherstone called A Difference in the Family. Featherstone wrote a sensitive and intelligent family memoir—it gave me some insight into the desperate love I felt for Nicholas and how our life together could be simultaneously rich, joyful, fearful, and sad. These resources, along with the friendship of other parents, began to offer me the beginnings of a roadmap about how to live a life very different from the one I had always imagined.
Donna Thomson with her son, Nicolas
Are there things I wish had been available to me: I would say that the Internet is something I wish I had had in the early days. I sought information and connections to other parents who were going through something similar to our family. As Nicholas began to exhibit symptoms that mystified doctors, I struggled to research similar cases. I borrowed articles from medical journals from other parents—a sort of underground press (samizdat of medical literature). It’s so much easier now, with my laptop.
KB: Building on your answer to my first question a little bit, in Chapter Six of your book, you quote the following from American Philosopher Eva Kittay from a 2008 conference at Stony Brook University: “there is so much to being human. There’s the touch, there’s the feel, there’s the hug, there’s the smile … there are so many ways of interacting. I don’t think you need philosophy for this. You need a very good writer.”
The quotation from Kittay refers to the experience of parenting a child with a severe disability, and to the difficult to capture uniqueness and beauty of that relationship. In your own book, you do a great job of fleshing out that same dynamic, and showing us what the dual parent/caregiver role can be. My question is: How well, in your experience, do we represent that caregiver/parent role in the media (print, television, film, etc.)? Have any representations of caregiving and disability that you’ve seen been accurate to your experience?
In your book, you make clear that we simply do not, societally, take caregiving (and support thereof) seriously enough—would better/more representation of these roles in popular media help us take the issue more seriously?
Donna Thomson: I do think that we need a more compelling and more accurate narrative in the media. Dr. Pamela Cushing, a professor of cultural anthropology and disability at the University of Western Ontario, is someone I spoke with recently about the void of caregiving stories in our society. I wonder if we need a very creative advertising agency to design a campaign! Certainly, there are many narratives out there that misrepresent us and our loved ones—stories that depict us as ‘saints’ and our children with disabilities as ‘heroes,’ for example. These representations just aren’t true, and they serve to perpetuate a rarefied view of our families that is ultimately exclusionary. The way that people give and receive care in their families is as individual as the colour of their eyes. There have been sensitive portrayals of family caregiving in film, although my sense is that the best ones are not products of North America. Generally, I don’t think the subject of dependency is prime-time material in our country. That said, Sarah Polley’s film Away from Her struck me as a nuanced and truthful portrayal of the effects of dementia on a married couple, so of course there are exceptions.
KB: One point made at your talk that really stuck with me was that as the population of our country ages, elder care is soon to be a much bigger issue than many people are ready to admit or think about. Are there other essential truths about care and caregiving that you wish more people knew? Are there some common misconceptions you’ve faced that you wish were easier to clear up?
Donna Thomson: I wish people knew that much of what makes most of us happy can be found in dependency relationships. Looking after people we love and receiving care are occupations rich in opportunity for intimacy, laughter, sweetness, and relaxation. That said, caring and being cared for is often a struggle.
David Brooks, in a recent OpEd piece in the NY Times wrote,
“People shoot for happiness, but feel formed through suffering. Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different. They crash through the logic of individual utility and behave paradoxically. Instead of recoiling from the sorts of loving commitments that almost always involve suffering, they throw themselves more deeply into them. Even while experiencing the worst and most lacerating consequences, some people double down on vulnerability. They hurl themselves deeper and gratefully into their art, loved ones and commitments.”
Most people seek meaning in their lives. They seek intimacy. They want to be known and loved. All these aspects of life satisfaction are byproducts of caring and receiving care.
*As one of the attendees at the official launch pointed out, eldercare will eventually have a bearing on everyone. Even if a layperson does not understand why it is important to provide care for people with disabilities, few people will ever deny that providing care for their aging parents is a priority for them. As the attendee in question so aptly phrased it: “If someone tries to tell me that they don’t like their taxes going to caregiving, I ask them which health service they would cut from their mother’s care first. That shuts them up pretty quick.”
How should family caregivers be supported in society? What is the role of government? What is the role of the private sector? What claim does a person needing care have on his family or on the taxpayer? What is the human worth of people whose needs are high, yet are not employable?
Recently, I have been thinking a lot about the barriers to people with disability or infirmity to pursue their aspirations and achieve their potential with the support they need and the dignity they deserve. Is my son more than the embodiment of his physical disabilities? Does my mother represent something other than an elderly woman afflicted with the outcomes of extreme old age? How should society see Nicholas, my son if not as ‘disabled’? I believe that one of the principal reasons that we as caregivers and our relatives with care needs do not often get a fair deal in society is that policymakers, nurses, doctors, employers and other community members often pidgeon-hole us as inconvenient, expensive and dominated by concerns related to care. Amartya Sen, the nobel prize-winning economist writes on the subjects of extreme poverty, justice, equality and peaceful societies. What have these subjects of international affairs to do with me as a caregiver or my family members who require my help in their daily lives?
One of Sen’s ideas has to do with the way in which policymakers tend to think of people as having just one identity that trumps all others. Someone is either is Muslim, or female, or Jewish, or homeless, or disabled. But Sen asserts that we are all much, much more than just one thing. Here, he explains:
A solitarist (or single identity) approach is, in general, a very efficient way of misunderstanding nearly everyone in the world. In our normal lives, we see ourselves as members of a variety of groups – we belong to all of them. The same person can be, without any contradiction, a Norwegian citizen, of Asian origin, with Bangladeshi ancestry, a Muslim, a socialist, a woman, a vegetarian, a jazz musician, a doctor, a poet, a feminist, a heterosexual, a believer in gay and lesbian rights, and one who believes that many of the most important problems that Norway faces today could be resolved if Norwegians could be made to take an interest in the game of cricket. Each of these identities can be of significance to the person, depending on the problem at hand and the context of choice, and the priorities between them could be influenced by her own values as well as by social pressures. There is no reason to think that whatever civilizational identity a person has – religious, communal, regional, national or global – must invariably dominate over every other relation or affiliation he or she may have.
So, what does this mean for our community? For me, it means that I am not just a caregiver - I am a mother, a daughter, an actor, an author, a social justice activist, a blogger, a sister, a Canadian and a theatre lover. My son Nicholas is a blogger, an ice hockey fanatic, a friend, a son, a brother, a Liverpool football club supporter, a Canadian, an internationalist and is a recipient of complex nursing care. My mother is an Anglophone Quebecer, a lover of Kennebunkport in Maine, a keeper of memories in our family, a party-girl, a mother, a feminist and a reluctant senior citizen. Let’s push this envelope a little further now. My friend’s father who suffers from dementia (despite his memory loss) is STILL a father, a husband, a joker - he is a former football player and a former school principal. His loving family keeps all the ‘former’ roles alive and celebrates the roles that dominate today. Another friend who is a wheelchair user could benefit from Sen’s multiple identity idea because with the benefit of this concept, she is not simply ‘disabled’, she is an engineer with a strong interest in women and leadership.
Now, there’s a concept. What are your multiple identities?
My last blog post was about saying 'I'm fine' when I am not fine. That got me thinking about the state of being 'not fine'. For me and for most other caregivers I know personally, that state is most acutely felt when our charge is ill, injured or somehow away from our loving arms.
So, the real refrain is "I am fine if Nicholas is fine. I am fine if Mum is fine". My son Nicholas has endured multiple surgeries and chronic pain. He and I have had many times when we were most certainly not fine. And I remember saying to the doctors "I want to tell something important about what I need as Nick's mother. I need you to be nice to me." I don't recall any doctor understanding the importance of my request. In order to be a good caregiver, I need exceptional kindness shown to me. At a time of crisis, I could not cope with the normal brief and sometimes brusque conversation style. I needed time and compassion from those whom I invested with the trust to achieve wellness and stability in my beloved son.
Eva Feder Kittay writes about caregivers as being 'the transparent self' - when we spend hours on end observing our charge, scanning for signs of disease progression, seeking to feel what they feel in order to imagine what might bring comfort.... we become transparent to others and especially to ourselves. This condition is necessary to giving good care. But it leads to our sense of wellness and being fine (or not) being absolutely connected to the wellness of our charge.
I felt so privileged last evening to find myself standing in the great hall of Marlborough House, home of the Commonwealth Secretariat in London. It wasn't the cobalt blue and gold of the ceiling or the marble inlay of the flooring that made me feel like the luckiest girl in the world. It was that I was chatting about issues of justice with a diminutive octogenarian of Indian origin - Amartya Sen. Anyone who knows my book and and my blog will know that Sen's work is the cornerstone of my thinking.
Sen's latest offering to those struggling with what to make of societies beset by poverty and violence is published by the Commonwealth Secretariat and titled "Peace and Democratic Society". Sen is its editor.
In his new book, Sen asks us to consider the politics of identity. He asks us to see ourselves as members of a variety of groups and belonging to all of them. He writes, "The same person can be, without any contradiction, a South African citizen, of Asian origin, with Indian ancestry, a Christian, a socialist, a woman, a vegetarian, a jazz musician, a doctor, a feminist, a heterosexual, a believer in gay and lesbian rights, a jazz enthusiast, and one who believes that the most important problem that the world faces today is to make cricket more popular across the globe, breaking the spell of 'silly' games like baseball. ....There is no reason to think that whatever civilisational identity a person has - religious, communal, regional, national or global - must invariably dominate over every other relation or affiliation a person may have." (pg.12)
It is single identities, either racial or religious, that most often foment violence, such as in the case of Protestant v Catholic in Northern Ireland, or Muslim v Christian. Multiple identities give us individually and collectively, a chance to find shared experiences of being human as well as common objectives. Sen decries the interfaith movement as being at its core divisive, because it is based on the single identities of faith groups.
This idea is very interesting for people with disabilities and their families - or for that matter, anyone else with perceived differences who is struggling for place and belonging. Take the case of my son, Nicholas Wright. One could easily say (and they do!) that he is a young adult with severe, multiple disabilities. Or, one could say that he is a young adult, male, Canadian, keen Ottawa Senators fan, son, brother, cousin, wheelchair user, heterosexual romantic who values political incorrectness.
Listening to Sen's keynote address last night, I wondered about the hierarchy of identities. How could we fail to rank identities on the basis of the power that we perceive to be inherent in each of those roles? The example that I thought of was a CEO who is also drug addicted. Couldn't this be a cause to 'choose' the most powerful identity in the list and just go with it, to the exclusion of those roles we deem to be less powerful? After the speech, I posed this question to Sen. He responded that "it doesn't matter about rating a hierarchy of identities. Identities just are and the only occasion that you might pick out 'drug addicted' would be if you were trying to prosecute the CEO for illegal drug use. Identities have an important relation to justice and the danger is when we assign ourselves or others single identities that have the potential to be very divisive." That is, of course, paraphrased from my memory of our conversation, but the gist is there.
This line of thinking is helping me to understand our own disability community and our relation to groups identified with aging and childcare. But I'll save that for my next post.
A first-time author learns a lot at an International Festival of Authors. For example, that a hospitality suite exists on the Penthouse Floor of our hotel. It's always open, serving coffee, fruit and biscuits all day. At night, multiple bottles of spirits, wine and beer appear for anyone who cares to relax with a drink. The view is fantastic and the conversation is even better.
One morning last week, I was sitting in the hospitality suite enjoying the morning newspaper with a cup of coffee. A middle-aged man sat down on the sofa opposite me and we began to chat. I asked him about his book and he asked me about mine. I told him about "The Four Walls of My Freedom" and about my family. He leaned forward and told me of his good friend in Washington State - a single mother with twin boys who suffer from a very rare, but catastrophic syndrome. The boys, aged six, are now blind and their physical function is degenerating quickly.
Washington State has a list of fundable conditions and these boys' syndrome isn't on the list. Their mother receives no help at all from government sources.
My new acquaintance mused, "When I'm not being an author, my real job is as a management consultant. In business school, we learned about how young companies grow and change. When a company is small, employees make 'cultural decisions' reached by an informal consensus based on knowledge of all parties concerned and the small business landscape. When businesses grow too large for anyone to have that knowledge, though, cultural decision is replaced by administrative decision making."
"My friend with twin boys", he said, "is a victim of administrative decision making."
I thought about my own experience in trying to persuade school boards, health authorities and social service providers that Nicholas' needs were complicated and compelling. I thought about the myriad of administrative decisions that transformed programmes and policies from helpful to unhelpful.
Over the last three years, I have done a great deal of research on Amartya Sen's Capability Approach. Sen won the Nobel Prize for Economics in 1998, largely for his revolutionary idea that measuring freedom, not money, will tell you about peoples' wellbeing, even those living in extreme poverty. The Capability Approach examines if and how people have the capability to have a life that they value and have reason to value. I felt an epiphany when I first heard about this approach, but I felt that Sen's idea gave tangible meaning in the context of my community and my country to our family experience with disability.
But, the idea of cultural vs administrative decision making may add another layer of understanding.
Was Sen trying to create mass cultural decision making for the world's poorest of the poor? Does the PLAN movement in Canada embody the inclination to dispense with administrative making in the lives of our children with disabilities?
And finally, does the business model once again have something important to teach those of us in the battlefield of everyday life that includes great challenges?
