“As we work to create light for others, we naturally light our own way.”
Mary Anne Radmacher
In this photo I stand at the edge of Black Lake in Eastern Ontario. I’m waiting for the sun to fully rise & shine its light on me. We all know that feeling of warmth. We turn our faces towards it, enjoying the light the sun sheds not only over us, but over the entire globe.
Where I stand is where I stand. That exact position offers me a particular ‘standpoint’ on this particular lake.
Lately I’ve been contemplating the phrase “to shed light on”. It means several things.
First are the many sun ray metaphors we so routinely use. Which has led to many ‘warm’ expressions. You are my sunshine, my only sunshine, you make me happy, when I am blue…. People may have sunny dispositions. When we get up in the morning we are told to ‘rise and shine’ and so on.
And there is use of the term ‘shedding light on’ as revealing information about something. And clarifying an issue for others.
“Shedding light on” is a turn of phrase that’s frequently seen in scholarly writing. A researcher will state that they seek to “shed light on” a particular point of interest. It may be an area of interest that is little understood. It may be a hidden corner of a particular field of inquiry. Or, it maybe a feature of social injustice that calls out for attention.
Both scholars and advocates in the area of maternally complex care seek to shed light on the manifold circumstances that caregiving per se immerses one in. It may be about, say, asthma or peanut allergy. Or post-surgical recovery in the home. Respite care, or childhood injection regimes for Enbrel or Methotrexate. Or feeding tube problems. Support of oneself financially while providing complex care. And so on.
In this Blog post I’m going to share a growing list PhD dissertations and MA theses undertaken in the area of care, primarily care provided by mothers to complex care children. I compiled these slowly over a period of years.
If you have undertaken one yourself and wish to add it, please do send me the information and I will do that.
Rather than being difficult to understand these research projects are readable. Rather than being distant to us and othering, they are relatable. Oftentimes very much so.
Why do this?
I do this because these projects matter.
Why do this here?
Because these projects often slip between the cracks of scholarly disciplines. As such they may go unnoticed.
A Blog is accessible. Where as for those outside the academe academic journals are not.
I suggest also that each project, in some regard or other, sheds light that is both welcome and unwelcome. The findings are not promoted where they are unwelcome.
There’s actually been an onslaught of funded research over the past 30 years now that has resulted in advice of various kinds to be given to us, as caregiving mothers. The stated aim of this body of research has been to ‘shed light on’ the reasons why life can be bleak, hard or dark for heavy-care performing mothers, women who deeply love and care for children with high and complex care needs.
And they aim to instruct professionals to teach mothers who perform such forms of care to be ‘better prepared’ psychologically and emotionally accomplished, to maximaize parenting capacity and so on. In other words, on how to perform such care. Often alone.
This is not what these other research projects advance as knowledge.
Caregiving mother scholarship itself sheds a light on this problem and related issues in a notably different manner. For one thing, their scholarly light shed is not the same hue as mainstream scholarship which has largely been conducted on and about caregiving mothers.
I share these dissertations and theses in order myself to participate in shedding light on how society and systems within it can better support care burdens that in fact, No One Person should ever be managing and performing primarily on her own.
Research undertaken by caregiving mothers (often undertaken with little institutional or financial support) comes from a fully engaged position, rather than an objective “view from nowhere” (see the exemplary work by feminist research methodologists Sandra Harding and Dorothy Smith for further explanation on this important point).
As well, our health care and other care centererd research sheds light on momentous gaps in mainstream research in the area of complex care children. It is not we mothers who need to be “fixed” in order to resolve that key issue. And this body of work makes that point best. Toni Delaney’s project is a beacon in that area of analysis.
As caregiving mothers we too have a unique identity. Nothing about us without us goes for us too.
Our research shines a light on the dire need of vastly greater levels of supports; state supports; support of others in the community; spousal support; child support; need of law reform, relational disability rights and so on, all in the setting of complex care.
Further, this caregiver scholarship sheds light on the fact that care in this context is not simply a set of tasks: swabbing a child’s arm; giving them a pill at the right time; changing sheets; giving a bath; taking to hospital, and so on. It is oh so much more than that. In our research we shed light on clinical suspicions in the area of diagnostics. We shed light on medical error and medical progress. We shed light on discrepancies, lost records, good practice, ethical dilemmas in care ethics, confusing essential definitions in public policy, injustices, conflicts in approach in care and so much more than that.
As caregiving mothers our hearts are fully engaged when we provide care. Its why our care matters. And its why our care is important. To us and to others.
To that end I share below a list of over 20 scholarly works informed by women who have provided support and care. And if you are yourself considering undertaking a project about care, these are some of the shoulders you can stand on in order to do that.
Research From Our Standpoint
Lee, Deborah Assad. Motherhood as usual: Two Studies of African-American Women with Technology-Dependent Infants. University of North Carolina at Chapel Hill Dissertation 1996
Jennifer Kim Bateman. Living Liminality: Maternal Subjectivity in the Context of Raising Children with Autism (Doctoral Dissertation, University of Pennsylvania, 2011.
Katherine Vatri Boydell. Mothering Adult Children with Schizophrenia: The Hidden Realities of Caring (Doctoral Thesis, York University, Department of Sociology, 1996)
Martha Brown. “I seemed to understand”: Mothers’ Experiences of the Schooling of their Children with Multiple Disabilities. 2011. MA thesis, Faculty of Education and the Department of Women’s Studies, University of Ottawa.
Callison La Shell Shannon The Special Mothers: An Ethnographic Interview Project of Six Mothers of Children with Autistic Spectrum Disorder Doctoral Dissertation. Ann Arbor. 1999.
Loralei Rita Carpenter. A Child’s Attention Deficit Hyperactivity Disorder on the Mother – The Hidden Disability of Motherhood. Dissertation June 1999 Griffith University.
Toni Delany, To Entrap and Empower: Maternal Responsibility in the Age of Neo-Liberal Health (Doctoral Dissertation, University of Adelaide, 2011) [unpublished]
Patricia N. Douglas. Governing Lived Embodiment: Autism, Asperger‟s and Care. MA Sociology and Equity Studies in Education. OISE 2010.
Jones, Elaine A. Social Reality Versus Family Law: The Experience of Mothers of Children with Long Term Disabilities (Master’s Thesis, University of New Brunswick Saint John, 2002).
Kiran Manhas. The Ethics of Transition: Human, Ethical and Legal Perspectives on Responsibility in the Move to Pediatric Home Care (Doctoral Dissertation, Department of Medical Sciences, University of Alberta, 2011)
McKeever, Patricia. Mothering Chronically Ill, Technologically-Dependent Children: An Analysis Using Critical Theory (Doctoral Dissertation, York University, 1991)
Neuss, Joyce. Mothers as Primary Caregivers for their Technology Dependent Children at Home: A Qualitative Study (Doctoral Thesis of Philosophy, New York University School of Social Work, 2004)
Melanie Panitch. Accidental Activists: Mothers, Organization and Disability. (Doctoral Dissertation, City University of New York, 2006)
Suzanne Michelle Neufeld. Primary Caregivers of Children with Chronic Illness and Disabilities: A Descriptive Study of Caregiving and Respite. 1997. University of Alberta MA Degree
Kristen L. Newman. Navigating Motherhood and The State: Mothers of Children with Autistic Spectrum Disorder. Dissertation 2008 University of New Brunswick.
Runswicke-Cole, Katherine. Parents as Advocates: The Experiences of Parents Who Register an Appeal with the Special Educational Needs and Disability Tribunal (Doctoral Dissertation, The University of Sheffield, School of Education, 2007)
Yi-Ting Shih, The Journey of Becoming and Being a Mother Raising a Disabled Child – The Transformations Between and Across Social Positions. (Doctoral Dissertation, Newcastle University, School of Geography, Politics and Sociology, 2012)
Townsend, Alayna E. An Ethnographic Investigation of African American Mothers of Children with Autism Spectrum Disorders Howard University, ProQuest Dissertations Publishing, 2012. 3513524.
West, M.C. Patterns of Health in Mothers of Developmentally Disabled Children. (MA thesis, Pennsylvania State University, 1984)
Ypinazar, Valmae Anne. This Is Our Life. This Is Our Child. Mothers Dancing in the Margins of Disability. (Doctoral dissertation, James Cook University, School of education, 2003).
If you are interested in sifting through another quite different compilation of dissertations in the area of disability, you can access one here, at the excellent UK journal, Disability and Society. https://www.tandfonline.com/doi/full/10.1080/09687599.2016.1277072