An Interview With Me About Caregiving and Writing About Family Life & Ideas

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
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.”

kittay_laudatio Donna Thomson
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 Freedom provides.
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-son-Nicolas-April-2012
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.”