There is something both familiar and recognizably heart-wrenching in the story of a person who is pulled into the position of caring for someone who has become, either suddenly or over a long duration, completely dependent. We see this tale played out regularly by those with aging parents needing help with daily tasks, and perhaps we know or have heard of those caring for victims of accidents or degenerative conditions. Almost always in these stories, there is a sense that something is being, and has been, lost by the caregiver. A loss of freedom, a loss of financial resources, a loss of leisure—in short, the implication that the caregiver is bound without benefit to the one who requires help.
Donna Thomson, in her memoir The Four Walls of My Freedom, shifts this narrative, and shifts it intentionally and unapologetically. Throughout her book about her life spent caring for her son, Nicholas, who is affected by cerebral palsy, she states again and again how much her son, and others like him with major disabilities, has to offer the world around him. Her refrain enters our Canadian social consciousness at a timely moment, as we (at the moment of this writing) sift through the ethical questions surrounding physician-assisted suicide, and as further debate regarding euthanasia catches fire in the public sphere. She addresses many of the questions of this debate explicitly in her autobiographical tale of her life with her son: What role can suffering have in human life? How do we value lives that do not only ever contribute economically to our system, but that even require additional resources from us? Who is responsible for caring for the sick, disabled, and elderly? What does it mean to be a citizen and to have rights, and what, if any, changes should be made in the case of the disabled?
Thomson’s book is at once a story of her family, and a story of disabilities activism. She illuminates the world of raising a child with severe disabilities in Canada as one of facing constant battles with healthcare providers, funding and support associations, governments, and the general public. Throughout her book, she points to the central issue being one of public perception of the rights of people with disabilities versus those of people without disabilities, and how and why they do and should differ. She argues, through introducing her reader on a personal level to her son and revealing the intensity of love and dynamism present in him and his life with his family, that people with disabilities are exactly that: people, and citizens, and as such, deserve the same rights as other citizens of our country.
This seems like a simple statement, but she develops the idea further with each chapter, filling out the different facets of her argument in an essay-like form. Without quite realizing it, Thomson is forced into a position of not only have to defend the value of a vulnerable person’s life, but also of trying to convince a public audience that seems to have largely ignored or forgotten any sort of existing definition at all of what it means to be a human person. Our system is one that tends to privilege economic success and contribution over any other activity, and mistakes the possession of wealth for an end rather than simply a means of attaining freedom and happiness. As a result, it becomes altogether too easy, and in fact, intuitive, to base a person’s worth on his or her abilities rather than nature. Drawing from various theologians and philosophers, Thomson rejects any definition of human worth that is based in abilities, capacities, or relationships. Rather, she states that worth is intrinsic, that dignity is part and parcel of being human, and that as such, it cannot be added to or taken away.
Threaded throughout Thomson’s narrative are instances of frustration with the way in which Canada has set up care, education, and treatment for children with disabilities. She paints her move towards disability activism as the logical outcome for any parent faced with the inefficiencies and injustices she faced. She states simply that, “activism was and continues to be a core part of my sense of being a good mother.” As an activist, she has brought her vision of citizen rights for people with disabilities to the forefront of discussions surrounding funding, accessibility, and care. She emphasizes the rights of parents in particular to not be forced into providing 24-hour, lifelong care for their child with disabilities, but to still be able to maintain an active role in their child’s life without relinquishing custody or any parental rights to the state. Describing the numerous challenges that parents of children with disabilities face, Thomson seeks to convince her readers of the necessity for change, and of the need for the support from those outside of the disabilities community.
One would assume that the title of her book is a way of describing Nicholas’ life, confined as he is now as an adult to his bed, unable to move without assistance and intense pain. Thomson instead describes to the reader how the title—taken from a line of the Trappist monk Thomas Merton’s autobiography—was actually chosen as a way of describing her own life. She describes the loneliness that is faced by most parents of children with disabilities, and the very real experience that she and many others have had of letting go completely of their own desires, ambitions, and dreams for their futures. She describes this process as painful, strengthening, and finally, life-giving. She realizes that giving up a cornerstone virtue of our modern society, freedom of choice, was key to her survival and happiness. In submitting to her role as caregiver, and in choosing to love her son Nicholas, “normal” things like going back to work, going out with friends for a carefree evening, and traveling, among others, were simply no longer options. She suggests that mourning these losses is what seems to be expected of her by those who would hear her story. But a state of mourning is no way to live life. She again draws her reader back to the ways in which she insists that her life has become more beautiful and full as a result of caring for Nicholas, and of all of the ways in which he is a gift to that world around him that so quickly moves to pity and then dismiss him.
While The Four Walls of My Freedom is a book that provides a well-written and heartfelt appeal to those within and outside of the disabilities community to consider more deeply the ethics of rights of the vulnerable, it could more correctly, and perhaps usefully, be read as a collection of essays. Thomson’s penchant for repeating parts of her narrative, reusing anecdotes in different contexts, and citing the same research or scholarly opinions in different chapters means that by about the halfway point, the circularity can begin to leave the reader a little confused. After another few instances of the same, that confusion develops into a touch of frustration. It appears that the book, which begins very much as an autobiographical narrative, interspersed with some helpful references and contextual information from experts and scholars, is rather a collection of essays that uses Thomson’s story as a jumping off point from which to tackle larger issues of disability rights, discussions of the definition of the human person and of citizenship, and the injustices present in a system that fails to recognize the vulnerable as entitled to care. These are important messages to share, of course, but might be more effectively communicated with some help from an editor.
Despite the organizational weaknesses of the book, The Four Walls of My Freedom remains an excellent resource that introduces and familiarizes the reader to the issues that are most relevant for those who care for vulnerable people in our society, whether they are people with disabilities, the elderly, or the sick. One cannot help but be drawn into the story of her life in all of its difficulties and joys, and to sympathize deeply with the arguments about ethics that is prevalent throughout her tale.