Caregiving can be told two ways

I had dinner with some new friends last month; all of us are caregivers of children with disabilities and developmental challenges. At one point, we discussed the question, “If you could change anything about your child, would you?” It sparked some deep reflections about making changes for our children versus making changes about them. Several caregivers shared how their children’s challenges have reshaped their families’ perspectives on the world.

A few weeks later, I spoke with a nurse who shared a very different perspective on caregiving. She works in an inpatient psychiatric care ward at a hospital. She told me that in the last few years, she is seeing more young patients living with significant developmental and behavioural diagnoses remain admitted for weeks. The youth are dropped off by parents or caregivers who then “disappear,” having reached their emotional and physical caregiving limit.

Both/and

It’s hard to hear the stories from the nurse; I’d much prefer to remain at that dinner table with my new friends. Yet, both conversations must be heard and understood. If only one story is given attention, we see only part of the whole and our perception is skewed. The two conversations are parts of a whole experience in caregiving, an experience that holds feelings of being overwhelmed and feelings of gratitude. I know the appreciation expressed by those sitting around the dinner table, and I ache for the caregiver who cannot give anymore and flees.

Those two conversations about caregiving made me reflect on how much our environment and social culture shape the way we experience disability, and the way we perceive and respond to disability. I’m reminded of that when I’m out with my two teens who are visibly disabled. Even the smallest moments – a trip to the store or a chat with someone in passing – hint at whether disability feels familiar or unfamiliar to those around us.

Elephant-sized rabbit hole

When I was writing this column, the phrase “the elephant in the room” came to mind. Thanks to a nudge from the Oxford Dictionary, I learned the expression originated from Ivan Krylov’s piece called “The Inquisitive Man.” Krylov writes about a man who goes to a museum and notices all kinds of small bugs and birds but fails to notice the large elephant.

Funny enough, that reminded me of one of the first poems my dad taught me: John Godfrey Saxe’s “The Blind Men and the Elephant.” As a kid, I imagined the six men trying to describe the elephant based only on the part they could touch. I learned that there are often many perspectives of the same big thing, each offering a part of the whole.

Strength in numbers

May we never stop being curious together to learn more – with the intention to help humans flourish. A collective curiosity, shared in community, broadens our understanding and awareness. Because what we choose to notice shapes what we prioritize – in policy, research and access – and our perceptions influence how those priorities develop.