Several years ago I brought my son, a non-verbal teenager who lived with profound physical and intellectual disabilities, to his pediatrician to try to diagnose and treat what appeared to be chronic pain. Despite numerous medical tests his primary physician was unable to identify the problem and initially refused to treat pain he could not diagnose. Convinced my son was in pain, I advised the doctor that his inability to diagnose my son’s pain should not lead to my son’s suffering. The doctor, clearly unhappy with this difficult mother, begrudgingly prescribed pain medication. As he left the office he stated to me, “perhaps by giving your son pain medication it will calm you down.” In other words, the physician suggested by treating my son’s body he was also influencing mine, or in other words the embodied experiences of my son and me were interconnected.
This experience with the physician led me to wonder if I was the only mother whose ‘sense’ of her child informed her understanding of her disabled child’s body, particularly when her child could not communicate their experiences using verbal language. Hoping to explore the question further, I decided to interview mothers to learn more about this interconnection between mother and child, and in particular how the interconnection between mother and child might allow mothers to understand their child’s body and advocate for their needs.
To learn more about the experiences of mothers I completed a series of in-depth one-on-one semi-structured interviews with mothers of children with intellectual disabilities and concurrent communication challenges. During the interviews, mothers described a sacred, mutual, and unique interpenetration of experiences between themselves and their children that was nurtured and sustained by ongoing togetherness. Mothers also noted that these interconnected experiences were difficult to describe and poorly understood outside of the mother-child dyad. Their unique relationship with, and ‘knowing’ of, their children allowed them to understand their children’s unique communication.
As a result of this interconnection, mothers were often able to effectively interpret their children’s bodies and experiences, and make informed health care assessments. Mothers noted health care professionals often struggled to understand and value this intuitive knowledge of their children, at times resulting in compromised care.
The results of this study supported a postmodern, feminist understanding of both the body, as well as knowledge. The body was experienced by the mothers in this study as complex, porous, and interconnected, rather than bounded and autonomous; experiences between mother and child blurred. Mothers’ intuitive knowledge of their children’s bodies was often accurate, even predictive, allowing them to “read” emergent concerns regarding their children’s health. However, their unorthodox source of knowledge challenged health professionals who preferred information they understood to be valid, reliable, replicable, and seemingly value-free or unbiased. The results of this study strongly suggested that collaborating with mothers and including their unorthodox, yet valuable, knowledge of their children’s bodies could improve care.
These findings are particularly relevant during the COVID-19 pandemic since hospitals routinely limit access to patient caregivers, even in situations of complex care. Patients with intellectual impairments and communication challenges are dependent on their caregivers’ ability to interpret their embodied cues speak and to their needs. Limiting the presence of caregivers in the hospital risks effective care. Mothers participating in this study told stories of compromised care when health care professionals dismissed their expertise. Hospitals must recognize that when caring for people with significant intellectual disabilities caregiving mothers are not visitors but are essential members of the health care team, even during a global pandemic.
Laura MacGregor successfully defended a PhD dissertation in Human Relations at Martin Luther University College and Laurier in 2019. Previously she received a Master of Arts (MA) from Waterloo Lutheran Seminary in 2011, receiving the Waterloo Lutheran Seminary Gold Medallist award. MacGregor began her professional life as an occupational therapist, completing a BSc(OT) at the University of Toronto in 1990 and a Masters of Science at Western University in 1995.
MacGregor’s research focuses on the lived experiences of extreme caregivers: specifically mothers and parents of complex-care children. Her MA work explored the spiritual journeys of parents of medically fragile children, with a particular emphasis on the theological challenges and parental need for pastoral care. Her doctoral work explored the interconnection between mothers and children and how this interrelationship informs maternal caregiving decisions. Her work is interdisciplinary in nature, often engaging the disciplines of theology, phenomenology, and health sciences.
She is currently an Associate Professional Faculty at Martin Luther University College. Meet the Prof @LutherWaterloo video.
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