John Loeppky is a disabled freelance journalist in Saskatoon.
I’m about to share what is an unpopular opinion in disability activism circles: The parents of disabled kids deserve to hold space and talk about their experiences in public. I know that parenting me couldn’t have been a cakewalk, and that, at least some of the time, the challenges facing parents of disabled kids are radically different from those facing disabled activists (some of whom might wish those same parents would be significantly quieter). I’ve written before about how style guides can help inform disability in journalism and, here again, we have a space for learning that is not about anger or resentment.
However, public narratives do tend to prioritize parents’ voices over their disabled loved ones without a critical eye. That needs to stop. And coverage last month in this newspaper about disabled people with complex medical conditions transitioning from the youth medical system to the adult one shone a light on one of the challenging realities of these types of discussions.
There’s a perception that only parents of disabled kids can talk accurately about their children, and that’s why, for a very long time, parents of disabled people – rather than disabled people themselves, even when they’re adults – have been given the lion’s share of the attention. Disabled adults are then relegated to the category of people we call the voiceless: a label that is too often a pretense to remove their agency.
Disabled adults aren’t voiceless though. And to treat us that way is to disenfranchise people and to play into stereotypes that lead to institutionalization and infantilization.
The issues surrounding disabled youth aging into the adult health care system are very important. But we must hear from disabled people themselves on that topic, as well as on other topics that affect them directly. The Globe story, however, did not expressly quote any disabled people. There are many people in this country willing to comment on this issue, not least because it’s been a central fight for disabled activists in North America at least since the independent living movement of the 1960s and 70s. There is a history here; there are people fighting here; there are people dying here.
Just because disabled subjects of a story might not find a typical interview process accessible doesn’t mean there aren’t others who can speak to the topic at hand or changes that can be made in the process itself. Parents, just like their kids, can and do have preconceived notions about what it means to live within our medical system as a disabled person, and those beliefs may bias the stories they share. That’s a reality, and it’s one that we need to interrogate when we look at how these stories get told.
I’m not here to quibble over the parents and their stories. I’m quite sure that their experiences are both difficult to manage and vital to hear. But at a time when programs like medical assistance in dying are expanding their breadth, with consequences for disabled people, we need to hear from disabled voices, lest we further the idea that medical neglect is something that only happens to other people who are in the disabled person’s circle, rather than the person themselves.
At its core, the issue with not hearing from disabled people when their stories are at the centre of the topic is that it allows the very systems we’re rallying against – systems that institutionalize, that don’t prioritize quality of life and that throw their hands up at the first hurdle – to perpetuate harm. We need to hear from people who have been institutionalized. We need to hear about the wide spectrum of disabled experiences that have faced the horrors of some of these places. We need to imagine a world that has more joy and less bureaucracy. And we can’t equitably do that without hearing from disabled voices.
So, here’s a challenge to all Canadians, especially in the field of journalism (including myself): Go out and look at what self-advocates and disability activists have been saying about these systems for decades. Look at a site like the Eugenics Archive to see how care decisions play into the deaths of disabled people; read the stories of people like Jonathan Marchand and his fight for support for his right to live independently in the community; follow local disabled activists.
Now that you’ve identified a gap in your knowledge – one that a lot of disabled people have too, by the way – it is your responsibility, and indeed our collective responsibility, to address that gap and ensure that the voices of disabled people are included at every turn. Parents and caregivers are often wonderful, but they’re not the experts on disabled experience. The people living in these situations are.