I love teaching. Teaching more than anything I do forces me to keep learning. Sure being a doctoral student means I read and write and think a whole lot. Or at least I am supposed to be doing those things. But spending time with students who ask challenging and thought provoking questions keeps me on my toes and ensures that I never stop unpacking and critiquing ideas – both mine and others’. Because the students ask hard questions I am constantly amazed and usually pleasantly surprised by how much students teach me.
Today I was asked one of those hard questions. These days I teach an undergraduate course exploring issues related to suffering, disability, and faith. The course is called ‘Questioning Ability’ and each week the students and I unpack a question related to one of those issues. Today’s question explored how and why we conflate disability and suffering. And while I don’t talk a whole lot about my journey parenting Matthew in class, the students know I have a child with complex and significant disabilities.
During today’s discussion it was noted that life support for very disabled or ill infants can be legally discontinued while in the NICU in the name of ‘mercy’, but that Robert Latimer went to prison after killing his daughter Tracy despite the the fact that he was utterly convinced Tracy was suffering. It was not lost on the class that the life of an infant in the NICU could be, and often is, ended simply on the notion of anticipated suffering, while Latimer’s response to his daughter’s confirmed suffering was met with a very different response by Canadian law. It was an excellent distinction I thought.
One student raised her hand during this discussion and asked whether I would be willing to comment on our decision to NOT discontinue Matthew’s life support while he was in the NICU – if it wasn’t too personal a question. After a moment’s pause I decided to answer because I felt sharing a bit of our story would add to the educational conversation by adding an example of a lived-experience to a hypothetical discussion. My answer also drew upon some of the theological and ethical concepts we had been studying (noted in brackets for those who are interested), but in a practical, real-world way.
We chose to embark on our journey with Matthew for three very clear reasons, though while in the NICU I would not have been able to articulate those reasons so succinctly. I just knew that discontinuing Matthew’s life support was unimaginable.
First we were, and are, utterly convinced of Matthew’s personhood regardless of ability or intellectual capacity (Singer, Fletcher). My husband and I firmly believe that Matthew’s story, which is the foundation of his personhood, began at birth and will continue to his death (Hauerwas). And we believe that Matthew’s story matters. What doesn’t matter is that Matthew’s story will not include such conventional milestones as degrees, marriage, children, or employment. What does matter is that Matthew is a vital member of our family and community and that his story is an essential part of our collective stories (Hauerwas, Vanier, Nouwen). And that without his story our stories would somehow be lacking. And while I am not sure I would have been able to articulate this rationale 19 years ago I knew that if I chose a life without Matthew then my journey would have a huge, gaping hole.
Second we chose to continue on this journey because I wasn’t afraid of disability. At the time of our decision I was a trained occupational therapist. I had spent years learning to nurture the potential and quality of life for people living with disabilities. I firmly believed (and believe) that disability and suffering are NOT the same thing. Disability can lead to suffering, but it is not a given. Rather, suffering is a fact of life for all of us regardless of ability (again Hauerwas, but also highlights points by Frankl, Soelle we were studying). The idea of parenting a child with a disability was something I felt that I had the training to handle. I was wrong, but that is another story and something I had to learn along the way.
But most important I chose to continue on this journey because I had hope. At the time of our decision we had no real knowledge of what Matthew’s life, or our lives, would look like. The physician’s reports were often ambivalent. Some doctors offered dire predictions. Others offered a more hopeful outlook. Given the extent of Matthew’s brain injury I now wonder about some of the rosier predictions we were given. They weren’t realistic. But at the time I clung to those optimistic predictions like a a drowning person would clutch a lifeline. For years the hope that Matthew would defy the odds and avoid serious disability were what kept me going. I look back now and label that thinking denial, but it worked. By the time I had figured out that Matthew wouldn’t walk, or talk, or sit, or eat, or read, or call me “mom”, none of that stuff mattered. Because Matthew was a vibrant, wonderful, and valued member of our family and our community because he WAS and because he IS. Full stop.