A couple of days ago I was chatting with a friend who is the Executive Director of a non-profit agency geared toward supporting parents and families raising children with disabilities. She mentioned that she had been recently asked to provide the name of someone who could speak to the issue of caregiving. The agency requesting the speaker, to the best of my knowledge, was not looking for an international expert like Eva Feder Kittay, Jean Vanier, or Tom Reynolds. Let me start by saying that if they were I most certainly would not fit the bill. Rather they were looking for someone who could speak with authority on the issue of caregiving. The ED apparently suggested me to the agency and provided a brief list of my background and education. The interested party declined stating they wanted an expert or professional, not a mother.
Really? Okay. Let’s unpack this a bit.
First, the very idea that being a mother and the primary caregiver of a profoundly disabled child who is medically complex somehow makes me, or anyone like me, NOT an expert in caregiving is offensive. Like, really, really, offensive. Additional degrees and credentials should not be required to take the ideas and opinions of caregiving parents very seriously. As any parent in my position knows decades spent navigating complex, and at times hostile, social, educational, and medical establishments develops expertise very quickly. Parents in my position are quite able to speak with considerable authority about caregiving. Similarly many of us over the years have been required to become experts in behavioural management, medical care, educational inclusion, and so on, often more up-to-date about current research and practices than the involved professionals. When it comes to a vast range of topics such as caregiving, disability, community living, and so on, virtually all seasoned and involved caregiving parents are experts. FULL STOP. Ignoring the experience and expertise gained via the lived experience of parenting and caregiving is condescending, patriarchal, arrogant, and often counterproductive to advancing the issues at hand. The medical and health care community is beginning to wake up to the reality that ignoring the expertise, opinions, and ideas of primary parental caregivers can lead to troubling outcomes.
Before I go on, let me make it very clear that I do not believe that women and mothers should require any sort of advanced credentials to place considerable value on their experiences and expertise. The world needs to listen to mothers because they can speak with authority on a broad range of topics, most importantly mothering and care.
But wait a minute. Let’s carry on with this discussion for a moment. To be fair, perhaps the agency wanted a more theoretical talk about caregiving. You know, one that talked about current research and ideas in the area of caregiving – the sort of stuff that the lived experience might not always address. Okay. Conveniently, I actually have both academic and professional credentials in the areas of caregiving and disability. I have an undergraduate degree in occupational therapy. I have worked clinically as a therapist. I have two master’s degree exploring topics related to disability and caregiving via different lenses. One degree is in sciences, one is in the humanities, meaning that I have explored the issues of disability and caregiving from a range of angles. I am currently a doctoral student exploring and researching, wait for it, caregiving. This means that I spend a fair bit of my time reading and writing about caregiving. I volunteer regularly with parental caregivers providing both 1:1 support, and group based support, allowing me to understand caregiving in a variety of contexts. I have developed and taught courses at both our local community college and university. I have spoken publicly about caregiving, most recently as the keynote speaker at a local university. I like to think that I understand caregiving, both practically and theoretically. But somehow, even though the local agency was provided with some of this information it wasn’t enough to qualify me as an authority on caregiving because I was a caregiving mother.
Why does being a mother discredit me and any experience I might have – professional, academic, or practical? Why are the voices of mothers ignored? Why does being a mother discredit many women’s professional endeavours and valuable life experience? Why does being a mother not count? And on a more troubling not, why did being a mother count against me? Sadly, it is a question many mothers, in a variety of settings, ask themselves on a regular basis. The voices and experiences of mothers are routinely ignored to the detriment of our communities.
Until key stakeholders understand that valuing the lived experience is an important part of truly understanding a key issue we will continue to live in a world where care and policies cannot truly match needs. Similarly, until we begin to value the voices of the mothers who provide care behind closed doors our current caregiving epidemic will continue unchecked.