“Oh, your mom lives downstairs, that must make it so much easier with your kids.”
“Well.. you know, yes and no, my mom has Alzheimer’s so there’s limits to how much she can handle the kids”
*awkward silence, face shifts, tone softens.. or maybe darkens
“I’m so sorry, that must be really hard on you all - you’re really amazing for taking care of your mom”
I have had some version of this conversation countless times. Now don’t get me wrong, I am the primary and full time caregiver for my mother so I am acutely aware of the ways in which caregiving can be VERY difficult. That being said, I’m also raising a baby and a school-aged child and THAT my friend is very hard too but people can at least understand that care work gratifying and mutual in some ways. In elder caregiving particularly those with any sort of disability the response is often of remorse, sympathies, pity even.. is it because this aging unlike like growing up is degenerative and things will only get harder as time goes by - possibly, but more than that I feel that it is because of our changing worth in the world. As Black women, that “worth” is already quite precarious and very much tied to the servitude we offer in the world so as we age it is all the more rare to see representation or appreciation of our value. “A life still giving” (working title) is a photo essay project about representation of the beauty that exists in ageing, Blackness, womanhood, and even disability, while also an exploration of a what it means to live a life that is not just still “worth living” but a giving life that is in bloom and in conversation with the world around it.
Photo Essay Pitch:
The story I’d like to share is an intimate story that is dear to my heart because it’s about my mother while also public concern about ageing, disabilities, carework, and representations of Black women all of which are often confined to the private realm of the home. My mother is an 82-year-old Black Haitian woman who has lived 62 of her years in Canada. Throughout her life she was passionately outspoken, a fearless activist and community leader who gave herself fully to pushing forward education in Quebec, the rights of Black folk around the world, the healing of her Haitian nation, and especially the wellness of disadvantaged children. So much of her life existed in the public realm that her aging and retirement towards a more private phase of her life was jarring to say the least. In 2020 she was diagnosed with Alzheimer’s Disease, though as her daughter I noticed the signs even a decade earlier, and the changes in her brain have made her life has become very small, intimate and unseen. When I tell people that my mother has Alzheimer’s, their tone immediately turns into one of remorse, pity, and sympathies as if she had left us already. As her primary caregiver, I see very clearly how much this disease has impacted her life but surprisingly I’ve also been able to connect with a completely different side of my mother that wasn’t available when I was growing up. Her inability to engage with the world at large has made her all the more present with those around her on a daily: my children, myself, our dog, and our neighbours/neighbourhood. The imagery that most have when I say that I take care of my mother is that our exchanges are now one sided – I give she takes. With this photo essay I want to reflect on the many ways my mother gives to us as well, the ways in which she engages with the world around her as her disease changes her abilities daily, what her mind chooses to hold onto and what it lets go of. I’ll be photographing her mainly in our home because it’s her main stomping ground these days but also around the neighbourhood where she created a sense of routine that is important to her. Though there is a lot of beauty in this story, there’s also challenges, hurt, fears, that have come up on this journey and I hope to weave them into the story as truthfully as they have existed in our day to day. Visually, I’ll representing these ideas through the people and objects she interacts with, but also the facial expressions she makes when talking about her world, and the physical habits I’ve noticed that she’s picked up over the years that each tell a story of where her mind is at these days.
As her daughter and caregiver, I feel honoured to be in a privileged position to be able to shine light on the beautiful life that she shares with us - a life that is still giving, while as PhD student who is interested in Aging Studies and Black geographies of identity and place in Canada, I’m excited to find ways to visually express the ways an aging Black woman with a mental disability is leaving her mark in the world.
I have started shooting this photo essay with the portrait mini-series we did this week and I’ll be scheduling time on a weekly basis to photograph my mother in her favourite places: our home, the community centre, and the walk to the dog park. To tie this story into a larger context about aging disability, and Blackness in Canada, I’ll be looking at artists and scholars who speak to these themes in their work such Deanna Bowen, Carrie Mae Weems, and Rinaldo Walcott.