Lived Experience

Magnolias, 12 x 15, Linocut on paper, 2024, by Helen Ries 

I have been working in programs connected to family caregiving and disability for several years. It is fascinating work. Families with a loved one who has a disability have amazing life stories brimming with resilience and creativity. These families are extraordinary. Contrary to popular belief, the social safety net for disabled individuals is threadbare, forcing families to scramble for scraps and do incredible things to make their lives livable.

I say these families are amazing with pride because we are also one of those families. For ten years, I have been designing, hacking and creating my way out of challenging, if not impossible, life circumstances as I care for my wonderful brother at home. My brother is a person with multiple disabilities. 

My work allows me to meet people conducting research on disability, disabled individuals, and families of disabled individuals. The researchers range from high school students to high-level scholars from our top universities around the world. I am also a researcher, having been part of various research teams these past years.

Today, I received a requests: Could we please recruit caregivers of disabled loved ones to participate in a half-hour interview? This researcher wants to better understand the challenges we face so he can find solutions. He is part of an innovation group, and lists his academic accolades, he ensures I am aware of his benevolence in caring about families of disabled individuals, even though he is not one of them.

I asked him how much he planned to pay the participants for their time. He replied, "Nothing."

I take a deep breath. I explain that a half-hour is a significant request from people who already have a lot on their plates and that he needs to compensate them for sharing their lived experiences. He is flummoxed, asserting that he, too, is working for free and that people should be grateful for our efforts to solve their problems.

I smile. I can feel the colour drains from my face.

He doesn’t want to hear it, but I want him to understand that the half-hour he is asking for is at the expense of my joy. It is time away from perhaps having coffee with a friend, cleaning the kitchen, or reading a book. He wants me to relive experiences that are excruciatingly hard for me. Afterwards, I will undoubtedly feel that familiar wave of despair and saddness that washes over me every time I tell “my story.”

“ I want him to understand that the half-hour he is asking for is at the expense of my joy”

I want him to know that I am struck by his arrogance. I wonder if he realizes that listing his academic accolades as an introduction immediately signals that he values institutional and structural knowledge over what families need to learn for themselves, usually alone? It is clear he holds his intelligence in higher regard than mine, even in this space which I know extremely well and he doesn’t. My lived experience took as long to achieve as his PhD. My time is worth as much as his. If you consider the emotional pain involved, it is actually worth more. Telling my story will help him climb his institutional ladder while leaving me depleted and empty-handed at the bottom.

There are insightful writings by disabled individuals and families of disabled individuals that explain their struggles. The ones I know include Mia Mingus, Eva Kittay, Alice Wong, Donna Thomson, and Manni Coe. He has not heard of them and has certainly not read any of their work. 

I want to wrap up this call, so I make motions to conclude. He invites me to “look him up.” I will not do that. He suggests I share his LinkedIn post about the project. I will not do that either.

Until there is a willingness to pay people fairly for lived experiences—especially those from marginalized spaces—don’t come knocking at my door.

To families of disabled individuals and disabled individuals: when someone wants a play-by-play of your struggles, ask for payment. The money is there, and it is possible to work with humble, decent researcher who will respect you and compensate you justly.