University of Manitoba nursing professor Dr. Roberta Woodgate and law Prof. Lorna Turnbull led a discussion Sept. 23, 2013, on disability and care. Woodgate spoke about her research on the disability trajectory of First Nations families of children with disabilities, which complemented Turnbull’s presentation: Mommy are we There Yet? Equality and Care in Canadian Law.

Woodgate noted that First Nations people have the worst health of any demographic in Canada. They are twice as likely to suffer from a disability — mostly related to environment or trauma, rather than genetics. The reasons for this are mostly social structure. That is, health can be linked to poverty.

She explained Jordan’s Principle, which came out of a case where a First Nation child died in hospital before governments could decide who should pay for his care when he returned home. This child-first principle is supposed to ensure that First Nations children will get the same social services as the rest of the children in Canada. The upfront costs will fall to whichever government is on site first, then governments can have the conversation about who will ultimately pay.

Woodgate explained that many hardships come with trying to raise a child with a disability. Often the mother provides most of the care, meaning she can’t work outside the home. Families Woodgate interviewed often felt as though they were parenting in a fish bowl – being judged much more harshly than those parents who did not have children with disabilities.

Many of the First Nations families just didn’t have the money to provide the care they would have liked for their children. For example, one child was unable to use a wheelchair because the hallways in the home were too narrow and there was no money for renovations.

Families spoke of the importance of being known within their communities. The key here was inclusivity, for example, accommodations for children in the classroom that allow them to interact as any other child would.

Woodgate ended her presentation with five recommendations: support for engagement, the need for services and programs that foster equality, promoting awareness, promoting physical and mental health of families, and landscapes for promoting meaningful participation.

Turnbull discussed how the themes mentioned by Woodgate are based in law. She argues that care work is gendered. That is, mothers are usually the ones who withdraw from their careers to stay home.

Turnbull said mothers face economic disadvantages. Women only earn approximately 72 cents on the dollar when compared to men’s salaries. They also tend to have less stable connections to the workforce. That is, women tend to take part-time work, drop out of the workforce to care for family members, work in “female jobs” that pay less and work for employers that do not provide pensions.

Women who do not have children tend to do better economically than those with children. Women without children earn 97 cents, on average, for every dollar that their male counterparts earn, whereas women with children only make 52 cents on the dollar.

Turnbull argues that the law contributes to this inequality by not recognizing the work mothers do. However, moms become hyper-visible when they are perceived as being “bad mothers.”

Turnbull said the courts are just not “getting it.” She argues that equality should be about inclusion. A woman should be able to me a mother and a worker. There shouldn’t be a penalty for women (as there isn’t generally a penalty for men) who choose to have children. Parents should have access to child care, extended maternity benefits, child tax benefits, and a restructured workplace that would make it easier for women to work and be moms. Turnbull continues to work on this issue decades after she first started because social structures continue to contribute to exclusion. She finished her presentation with this question: As a society, are we willing to recreate social structures?

Questions:

I am torn on this issue. I worked with families as a respite worker so I do recognize how important resources are. However, I think there needs to be a limit on courts, I feel like this should be a legislative issue. I think there are dangers in viewing this as a gender issue.

Caring for children with disabilities isn’t valued and that is an issue. On the ground it is a gender issue because women are doing most of the work, including in other countries. Even in the Nordic countries, women are still taking on most of that work.

Why isn’t Jordan’s Principal working?

Because of money. The federal government in particular is fighting and it is very hard to get everyone around the table to discuss these issues.

Why hasn’t there been a landmark case to decide once and for all who has to pay?

Test cases are very hard and costly. Parents of children with disabilities are too worn out to research their rights or pursue them in court.

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