This post is about the support of disability care and caregiving older mothers.
Which margin am I referring to in the title of this Blog post? It is the margin that some excellent scholarship suggests as being the social location where mothers of children with disabilities reside in the larger text of motherhood as an institution.
For example, authors Carpenter and Austin use the metaphors of text and margin to interpret the experiences of mothers with children with neurological disabilities. They explain that the text of motherhood is occupied by the good mothers and that beyond the text, is the margin. It is in the margin that the children with neurological disabilities (in this case ADHD) and their mothers are situated by society.
These authors explain that “mothers measure poorly if their children are outside the text.” They add that the boundaries of the text are carefully policed by involved others who judge the value of mothers as being lower when they and their children are situated outside the text.
However, these authors also state that caregiving mothers do not passively sit in the margins. Indeed, their mothering is seen to mess up the boundary between the text and the margin, in particular when they trouble the margins themselves.
Carpenter and Austin claim that troubling the borders of the motherhood myth is ‘work.’ I agree. Many of those who have raised a child in this context also know this. Carpenter and Austin and also claim that this work is effortful, consequential and disabling, something that requires careful strategy.
They conducted a study and it found that mothers outside the text felt the impacts of being silenced, criticized and hurt, but also found that mothers found ways to manage that. They also found that in struggling to find a place within the text of motherhood, some mothers had complex experiences from which they were able to critique the text. In other words, they problematized the content of the text.
However the study further found that the mothers who troubled the margins in order to be included in the text actually re-inscribed the myths of motherhood as an institution that placed them outside-of-the-text.
I’ve long pondering how we ought to value maternal caregiving where there is little money to go around. I’m not referring here to the mothering, I’m referring to care work mothers perform. In considering this question I have revisited an important family care case from across the globe, but in a British-based common law jurisdiction, not unlike Canada. Although from afar, there are lessons in this litigation that we can all benefit from.
And Mrs. Spencer is to be applauded for her efforts to change the law in her justice-seeking project when she refused to be marginalized in support policy that denied her recompense, allowing that she live in poverty.
This relatively recent case from New Zealand shines a light on a few issues that arise in the context of the question above, as to how do we value mothers who provide forms of care outside the text of ‘ordinary’ mothering? Spencer v Ministry of Health,  NZHC 1650 [Spencer] helps us to think about the issue. https://featbc.org/wp-content/uploads/2016/10/2016-Spencer-v.-Ministry-of-Health.pdf
The issue in Spencer’s claim was brought by way of ‘a reference’ by the New Zealand Human Rights Tribunal, to the New Zealand High Court. This means it was a legal case having to do with government asking the courts perspective on a major legal point of interest.
The facts of the Spencer litigation are that Mrs. Spencer and her husband Mr. Spencer were separated in 1990. At that time Mrs. Spencer stopped working in their joint family business, and continued on as their son Paul’s full-time caregiver. Paul had never lived independently and his mother had always been involved with his care at home, as do many single caregiving mothers. This is the context in which Mrs. Spencer slid into poverty. In order to survive she received social assistance during subsequent decades after the divorce. She is reported in to have recently accessed her pension which although less stigmatized than is welfare, but certainly is not a robust level of support after a full life of care work and work in a business.
Mrs. Spencer’s legal claim pertained to the care she had provided to her son Paul from January 2001 to May 2013, during which the Ministry declined to pay for her services to her son, under its home care policies. The government declined they stated because of her status as Paul’s mother, which disqualified her from receiving payment.
In relation to this refusal, she brought a claim of discrimination in the Human Rights Tribunal, and won. The Ministry of Health questioned whether the Tribunal that heard her case for support ever had jurisdiction to actually hear her claim.
We had a similar sort of legal case here in Canada some years ago. In that case a father sought payment for caring for his adult daughter who had severe cerebral palsy and who chose her Dad to be her caregiver. The Canadian case dealt with the fact that “The Continuing Care Program does not provide financial remedies to family members to care for relatives either through direct payment to the individual, payment through a homemaker agency, or payment as an approved service provider (e.g. family care home or licensed facility).” See: HMTQ v. Hutchinson et al,2005 BCSC 1421 which you can access at: https://www.canlii.org/en/bc/bcsc/doc/2005/2005bcsc1421/2005bcsc1421.html?resultIndex=6
Returning to the 2016 New Zealand case, The High Court decision noted that since 2014, Mrs. Spencer was paid a sum of money by the Ministry of Health under its family care policy. She was paid minimum wage for 29.5 hours of personal care and household management a week, pursuant to the New Zealand Public Health and Disability Amendment Act, 2013/22.
Spencer was awarded $207,000 in back pay. This award of money acknowledged this caregiving mother’s efforts and her right to support. It acknowledged that care has a monetary value. And it drew attention to the notion that falling into poverty as a full time caregiving mother is not ok.
However, the 2014 legislation, which barred further such lawsuits, was passed “under urgency” and without public consultation. In the new legislation, a clause prevents any future claims of discrimination. This is something to take note of. It is an example of the state cementing care giving mothers care work in the margin.
See “Editorial: Disability Bill Demonstrates Abuse of Due Process”, New Zealand Herald online: <http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10884930>.
Thank you to disability advocate Marcy White MSW, MBA for kindly reviewing this Blog post for me in advance of its being published. Her intelligent and trained eye was most helpful.
Lorelei Carpenter & Helena Austin. “Silenced, Silence, Silent: Motherhood in the Margins” (2007) 13:5 Qualitative Inquiry 660.
Photo Credit, Michael Craig https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11678171