Today, as I was slogging my way through a paper I am trying to finish, information about an upcoming conference scrolled across my computer screen. The conference explores issues related to spirituality and disability and it looks fantastic. Every year I hope to attend the conference and every year I cannot for a long list of reasons, most of them related to the fact that I am the caregiver of a really complicated, high-care kid and getting away is equally complicated. The last time the conference was in Canada I had plans to attend, but unfortunately the gathering was during a stretch of time when Matthew’s medical status was very fragile. Such is life.
This year’s announcement shared that the keynote speakers are all fathers of kids with disabilities. That is great. The lived experience of parents and caregivers is an important part of our ongoing conversations about faith, care, and disability, and I am thrilled fathers are speaking. However the fact that all the keynote speakers were fathers leaped off the page at me. I wondered if a mother might be speaking at any time during the conference. I went and looked at the list of conference speakers, and sure enough, the majority of speakers were men. A few women are speaking but it is unclear if they are the mother of a child with disability. I don’t think any are.
We know why mothers aren’t presenting. 99% of the time mothers are the ones at home providing care. Mothers of complicated kids are rarely the person who are pursuing careers, academic or otherwise. Mothers are at home changing diapers and wrangling appointments with specialists. The reasons for this are simultaneously simple and complex. Any real conversation would require detailed social analysis – something well beyond what a blog can offer. But definitely a topic that ought to be unpacked at a conference exploring issues related to disability.
Home care supports are inadequate for families with complicated kids so someone has to stay home. Since men still often earn more than women, even when in similar careers, financially speaking the decision often is clear-cut for families raising children with very expensive needs. Throw in the mix that society expects, no, often demands, that “good” mothers sacrifice for the good of their children, and we find ourselves with a statistic that shows that it is the mother who stays at home. Almost always. Physical and emotional well-being, financial security, hopes and dreams – all of it is expected to be laid on the alter of good motherhood. Sacrifice is an unspoken expectation, but the endpoint is rarely defined. How much is a mother to sacrifice? Society usually answers: everything.
So while I am thrilled to see fathers of children with disabilities speaking at an international conference exploring faith and disability, I am profoundly disappointed that these academics, people interested in making the world a better place for people with disabilities and those who care for them, did not ask one very important question.
Where are the mothers?