The following is the transcript of the talk I gave, as part of a panel, at the Canadian Caregiving Summit (Ottawa, November 2023). I presented alongside two amazing women, Brenda Blais Nesbitt and Michelle Wan, and the panel was moderated by Terrence Ho.
I re-recorded the talk and distributed it via my podcast, Matters of Engagement. The episode includes a conversation with my friend and co-host, Emily Nicholas Angl. You can listen here, or watch the video version here!
Hi, my name is Jennifer. Thanks so much for having me here today. My son Owen had cerebral palsy. He was also deaf, non-ambulatory G tube fed, incontinent, fully dependent for all aspects of daily living. For his complex care needs, he required “extreme caregiving” all his life. (I borrow that term from my old friend Donna Thompson!) Owen required 24 hour extreme caregiving until his death in 2010, at the age of 12. After Owen died, I embarked on a few projects, kind of to process everything that had happened.
Now one of those projects was to write my book, No Ordinary Boy. If you visit noordinaryboy.com, you can actually download the PDF of the book for free. And I’m mentioning that because it tells a much fuller version of our story than what I’m going to share now. And another project of mine was to earn a master’s degree in bioethics. The study of bioethics includes a number of things, like looking at the clinical encounters between doctors and patients, as well as evaluating health and health care policy. And a big focus of bioethics in both of those realms is thinking about scarce resource allocation, like who gets organs or emergency beds, and on what basis. So we’re concerned with conceptions of fairness and justice.
But another aspect of bioethics that we consider is the ways that health and healthcare impact our common societal project of supporting human flourishing. So how do our health and health care experiences impact our ability, as individuals and together, to feel fulfilled, and to support our families to build community and to pursue our own goals?
Our topic today is “Caregiving and Work”. And there are many ways to think about this from a bioethics perspective. And the one I want to highlight is this: that work is, in our society, one of the very important ways that we as humans build our social networks. It’s one of the ways we form our identities, and how we contribute to society. It’s how we earn money to enable us to do the things we want to do. And all of these things contribute to this idea of human flourishing.
Okay, so that’s work. Now, except for the money part, which is a big one… one might imagine that caregiving, even the extreme kind, offers the same thing. Ask any of us at this Summit, and you’ll find that we build strong social networks with fellow caregivers. And indeed, our identities become shaped by our experiences. But in addition to the money part, there’s still one more really big difference between work and extreme caregiving. And that is choice.
I was a longtime round the clock caregiver to a child who was born with multiple severe disabilities. And I performed that role out of a profound sense of love and duty. And I think as a result, Owen had a pretty wonderful go of things. But there was something I could never really confess until now. And it’s that being an extreme caregiver was never what I had envisioned for my own life. And to be completely honest, for most of the time, it’s really not what I wanted. And it also maybe didn’t have to be that way.
After Owen was born, I learned pretty quickly that our circumstances were seen by everyone around us, including the healthcare profession, as a personal tragedy, and that what we were grappling with was my family’s problem and ours alone. I can see it now, that I felt stuck in my role, and, frankly, in my life. And while we did muddle through, my caregiving responsibilities took an immense toll on my own opportunity to flourish in the way I would have wanted. I abandoned my own personal priorities and ambitions, in order to keep my son alive. And not only did he of course depend on me to do that, the health care system did too.
For me to access anything available to us through community or systemic supports required an absurd amount of effort. I was endlessly having to prove that he was disabled enough to receive services. I even had to find my own (funding) flow-through agencies to manage money that Owen was entitled to, I had to find creative ways to cobble together a paid support network so I could just somehow grab moments of sleep. And to paint a picture of how vital this was: for his entire 12 years, Owen could only fall asleep and stay asleep if he was being actively held and rocked. My very survival depended on having paid support. And all of that work doesn’t even begin to account for the time and energy spent on his therapies, his interventions, his schooling, or managing his many, many illnesses and surgeries.
In my case, my extreme caregiving era had a beginning and an end. I was 28 when Owen was born and 40 when he died – which, frankly, were the years I had been thinking I would be able to build my career while raising my children. The career part had to fall away. And I did indeed grieve that for a long time. It also left me in a position of complete financial dependency. I was reliant on both my partner and the state to not only provide a safety net for Owen, but also for me. I was in the prime of my potential working life and had no means of supporting myself, or investing in my own future.
Now, I do have to say that for sure, my partner – the boy’s dad – also faced challenges as a father of a child like Owen. But his career plans weren’t thrown off course. And his ability to work was never impacted. And as our relationship was breaking down and we were splitting up – the boys were around six and eight at the time – their dad didn’t have the same financial concerns I did, especially when it came to self sufficiency and earning an income.
I am now 53 years old. I had about four years of salaried employment before I had kids. I was a full time extreme caregiver for 12 years and have been self employed since. Now, these days, I also look after the affairs of my elderly mother and support my other son who is about to enter university. So even as I’ve been building a career finally, the financial pressures haven’t let up and I do have to keep working at a high intensity. But I see that many of my peers are starting to think about retirement, or at least contemplate how they can end their careers on a high note. Some are making plans to enjoy their empty nests. But those of us with extreme caregiving responsibilities, either currently or in our history, we’re on shaky footing in terms of career finances, or both.
So let’s circle back to this conception of human flourishing and our society’s expectation of a right to pursue fulfillment and happiness. There are some things we collectively deem fit to support in this regard, right? Especially when it comes to nurturing families. Things like maternity leave, subsidized daycare, family tax breaks and benefits. But this level of extreme caregiving that I’ve been talking about doesn’t even register at that level. What we do is just seen as an extension of unpaid domestic work and family responsibility, with the cost felt predominantly, but of course, not exclusively by the female in heteronormative pairings.
The requirements of this unpaid work are so all consuming that employment is often impossible, which essentially keeps us the caregivers in permanent financial dependency to a partner, to family members, to the state. And if and when the caregiving responsibilities end, we’re basically no further ahead than when we started. In fact, we’re often quite behind.
So you might ask, what do we do? Well, from a workplace perspective, we can consider ways of perhaps adjusting how we think about qualifications or education equivalency, and think about employer expectations, and maybe how we can translate our caregiving experiences to mean something in the workplace. Excellent ideas, of course, but I think this would require shifting some pretty deeply held embedded cultural norms. So while super important, I do think that’s more of a long game. But we can also approach this from a policy level and decide that we want to live in a society that sees extreme caregiving as a shared responsibility. Not just a terrible bit of personal bad luck.
As part of this push for a national caregiving strategy, there are lots of interesting policy ideas being tabled, including mandatory CPP contributions for caregivers, universal basic income (one of my favourites), paid caregiver leave and caregiver health benefits. And these are some of the ways that society can help ensure that caregivers get the support they need. And I wanted to end on this note, because while stories are powerful, they can also shift focus to pity when what is really needed is systemic change.
So I’d like to conclude this session on caregiving and work by saying that caregiving, especially the extreme kind, is work. It’s unpaid, and relentless, and it has an immense opportunity cost. It leaves us with few options for income, investment and careers and future financial stability. I hope these discussions at this Summit can spark some new thinking about how to enable caregivers to participate in society and working life in the ways that we choose to.
In other words, to give all people a chance to flourish.