Shining A Light: Relatable Mother-Scholarship On Care

The author enjoying the sunrise in Eastern Ontario 2013 – Photo Credit Susan E. Murphy

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).

The sun shines through the storm – photo credit Cameron Crawford 2018

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).

Nota Bene:

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

The File of Kristine Gravel- McKeague & her baby daughter Pénélope Ottawa 2009

I have to say that my “Slow Blog” is beginning to look like a fast one!

This, like my second Blog post were examples of cases that I presented at a talk I gave in 2011 at The School of Nursing at York University https://nursing.info.yorku.ca/ entitled Making the Link: Public Policy and Mothers of Children with Disabilities in Canada (pictured here on the right after I had presented this talk (with Dr. Nazilla Khanlou).

Truth be told I’m purloining my own earlier work!

To provide a bit of background about Kristine whose photo appears above, she’s a married Mum & has a supportive spouse. When Pénelope came along Kristine had a child already. She was therefore an experienced mother.

Also note worthy in the context of this Blog Post, Kristine holds a degree in Sociology and Childhood Studies from Roehampton University in England. She’s a family support worker at a major community service centre. She had studied infant massage.

What more training might you need for motherhood you ask?

And indeed, Kristine believed that with her professional skills, her specialized education & her solid social support system, and her deep love of Pénélope that she could cope with being a complex care mother. She found in her case that was not so however.

When she sought state assistance for care and support for Pénélope she came up against some controversial provincial care policy.

Kristine had asked the province (the then Ontario Ministry of Community and Social Services) for a placement for Penelope in a care centre where she, Kristine, would continue as Pénélope’s Mum, making all decisions for her daughter’s care. This became thorny and the care facility stated they needed custody to be able to make medical decisions for Pénélope since the baby would be in their care. Kristine was advised that she would have to enter into a legal process and relinquish custody of her daughter to the Province in exchange for the care and services they both badly required. Moreover, as Kristine was to learn, this loss of custody would legally be deemed to be available as a result of the legal abandonment of Pénélope by her parents under the child welfare provisions.

Thus, state wardship was offered in lieu of voluntary care. This is a curious situation since state care would not be in the best interests of Penėlopė & accessing it this way surely engages Kristine’s constitutional rights under The Canadian Charter of Rights and Freedoms. It was a lose-lose for mother & child.A bigger conversation than this post allows here.

As well, the state wardship option was not designed to support this mother’s mental health, and in fact this approach to care has had, and continues to have, just the opposite effect on women’s mental health.

Indeed this very thing was claimed in a lawsuit brought against Ontario by another mother, Anne Larcade, in an Ontario Court in 2002. I will Blog about the 2006 Ontario Court of Appeal decision in the Larcade case another day. For now suffice it to say that Anne Larcade, in both a Maclean’s Magazine interview and also in The Star online, where asked Ontario “Where’s The Humanity?” That was many years ago now in solid piece of journalism by Tanya Talaga. It is a questions mother’s in such disputes continue to ask across Canada. See https://www.thestar.com/news/ontario/2009/07/23/wheres_ontarios_humanity_mom_asks.html

Interested in that now? You can look at the article Appeal Court Overturns Disabled Children’s Lawsuit by Karen Howlett in the Globe & Mail from November 26, 2006. https://www.theglobeandmail.com/news/national/appeal-court-overturns-disabled-childrens-suit/article971953/

Anne was a single working mother of two. She was not in a minority as a single caregiving mother in North America. Most children with disabilities are being raised by single mothers, as disability rights scholar Levine showed in 2008).

Moreover, the Literature tells us that among employed married middle aged Anglophone parents of children with disabilities with diverse diagnoses 42% of parents demonstrated symptoms of psychiatric distress (Thurston, et. al, 2011). The solution for mental and emotional distress in Caregiving Mothers is not child loss. It is child support.

I note that both mothers, Anne and Kristine, ultimately obtained care in Ontario, without child loss, after each entered into a dispute with the province and each presumable entered into negotiations for care with them as well. Not all mother’s are capable of that. What about them?

The above photo of Kristine & Pénelopé was featured in Parents of Disabled Kids Face Agonizing Choices by Author & Journalist Tanya Talaga in The Star at https://www.thestar.com/life/health_wellness/2009/06/24/parents_of_disabled_kids_face_agonizing_choices.html