By Susan Lymbery, Teaching Faculty Member, Faculty of Academic and Career Preparation and Faculty of Arts and Humanities, VIU
Imagine your gifted six-year-old has just been diagnosed with an inoperable, malignant brain tumor and is expected to survive only weeks. When this happened in my family, I gave up everything to spend every moment with my son. Thirty-one years later, my son survives, but with progressively-developing disabilities, including brain bleeds, hearing, vision, mobility and cognitive losses, and premature frailty due to long-term radiotherapy damage.
Over the years, I have lost more than I could ever have imagined—my hopes and dreams for a child of promise, my career with its status, my earning potential, retirement savings, and even my physical and mental health. Very few comprehend the compounding load of past grief, the ever-present fears of pain and death to come, and the profound social isolation caregivers and survivors experience.
Today, some 4,000 Canadians caregive for a pediatric brain tumor (PBT) survivor, shut in by caregiving burdens and inordinate sorrows, shut out by an abled society, and shut up by “relations of ruling,” the powerful structures that order society (Dorothy E. Smith, 2002; Morris, 2014; Norberg & Steneby, 2009; Palmer et al., 2011). For centuries, care in Canada has been framed as a female duty and responsibility, as it relieves men to pursue employment for pay with privileges and benefits, granting them a political voice and a more powerful social status. In “Disability care as women’s work,” Hilary Stace (2013) notes:
“[c]are is overwhelmingly the role and job of women, either unpaid or poorly paid. It is a role that may be life-long, and one that requires ongoing vigilance and responsibility. A more sinister trope sometimes blames women, particularly mothers, for disability, particularly of their own child.” (Stace, 2013)
In Canada, the gendered, political construction of caregiving imposes life sentences on mothers whose child becomes disabled, impoverishing them by obliging them to provide around-the-clock care without pay or breaks or benefits like holidays off, vacations away and savings for retirement; caregiving mothers do not retire unless their child dies. Moreover, caregiving work is devalued in a society that upholds values of health, fitness, success and wealth.
Mothers who leave their paid work to caregive are socially subsumed as invisible, silenced, informal workers; despite thirty years of visits, my son’s specialists refer to me as a generic commodity—as mother, which implies the more nuanced reality of [m]other. My UBC doctorate project under the supervision of Dr. Shauna Butterwick hopes to unite caregivers of PBT survivors across Canada in a weblog, or blog, for interactive support and hope and for a detailed assessment of unmet needs that could lead to improved public awareness and perhaps policy change.
Given the alternative of exorbitant, formal, paid care, our society expects mothers to care without acknowledgement, recognition or compensation for critically or chronically ill children at home. As Forinder and Norberg (2010) note, the traumas of high stress include secondary cancer “threat[s], uncertainty and loss . . . grief and sadness, [and] loneliness” (Forinder & Norberg, 2010).
Family and friends cannot fathom these lifetimes of losses, and so they may blame the mother, by telling her to simply get over it, or that she’s blessed to invoke shame for her sorrow, even as they withdraw due to their own dramatic trauma fatigue (STACE, 2013). Other than two hours of respite a week, all my son’s care falls to my husband, my older son and me, as friends and close family find it too painful to help. Almost all marriages fail when a child has a brain tumor, yet my marriage has not, and so I have somehow earned two degrees and am working on a doctorate, while teaching at VIU (since 2007) as a part-time sessional without most benefits at non-regular wages, while sharing caregiving.
It is hoped that my doctoral research project will allow me to analyse other caregivers’ circumstances and gather a deeper understanding of unmet needs. In return, it is anticipated that this new blog will offer caregivers opportunities for connections and relationships with those who profoundly understand, who may want to share support and offer hope, and who may wish to claim voice by writing about the context of our invisible work in an anonymous, secure members-only format. Each blog member will choose a level of comfort for participation, including reading, writing or withdrawing, as needed.
I hope my project does what others have not: I hope to create a new and private space that collects emerging knowledge and supports engagement—a place that values standpoint theories, a space that builds an understanding of our unmet structural needs, while noting our resiliency. The aim of my thesis will be to inform Canadians about maternal caregivers of PBT survivors and their circumstances, by contributing a new understanding about the oppressive structural dimensions of our care. It is also hoped that my thesis will provoke greater awareness—perhaps even contribute to a national discussion on the societal forms of oppression that shut us away in our homes, shut us out from community participation by an ethos of health, fitness and wealth, and shut us up by structural exclusion that disrespects and devalues those who care for the disabled, rendering us voiceless and apolitical. I hope to follow my thesis with publications written for academic and general interest forums to educate and advise Canadians and policy makers of the absence of supports and the structural injustices of our work for our and our children’s sake.
Dorothy E. Smith. (2002). Texts, facts and femininity Taylor and Francis.
Forinder, U., & Norberg, A. L. (2010). “Now we have to cope with the rest of our lives”. existential issues related to parenting a child surviving a brain tumour. Supportive Care in Cancer, 18(5), 543-551. doi:10.1007/s00520-009-0678-3
Morris, L. A. (2014). The impact of work on the mental health of parents of children with disabilities. Family Relations, 63(1), 101-121. doi:10.1111/fare.12050
Norberg, A., & Steneby, S. (2009). Experiences of parents of children surviving brain tumour: A happy ending and a rough beginning. EUROPEAN JOURNAL OF CANCER CARE, 18(4), 371-380. doi:10.1111/j.1365-2354.2008.00976.x
Palmer, S. L., Boyle, R., Armstrong, C. L., Gajjar, A., Lesh, S., Wallace, D., . . . Knight, S. (2011). How parents cope with their child’s diagnosis and treatment of an embryonal tumor: Results of a prospective and longitudinal study. Journal of Neuro-Oncology, 105(2), 253-259. doi:10.1007/s11060-011-0574-9
Stace, H. (2013). Disability care as women’s work. Women’s Studies Journal, 27(1), 13-24
 I am also indebted to UBC’s Dr. Michelle Stack and VIU’s Dr. Jerry Hinbest as the other committee members.