Yesterday I went to TIFF for the Hot Docs film festival to see three movies about disability: BBQ at Josée and Serge's, My Disability Roadmap, and Sexual Healing.
BBQ at Josée and Serge's is the story of a blind couple, told at a BBQ they're hosting at their home. In My Disability Roadmap Sam Habib figures out how to navigate adulthood, with a little advice from some impressive figures from the disability rights movement. In Sexual Healing we follow Evelien as she discovers the joy her body can bring.
The three films show people living lives of their own choosing. My social media has been full of stories about how medical aid in dying, MAID, is easily accessible while affordable adaptive housing, home care, financial assistance, and other essential services are not. These films don't address the logistical circumstances of people's lives that make it possible for them to access the essential services that are out of reach for so many disabled people. It was nice to have the bureacracy and battles fade into the background, allowing us to focus on personalities instead.
I was surprised by how sweet Sexual Healing was. The film isn't the celebration of sex and sexuality I was expecting. It demonstrated the subtle spiritual harm caused when there isn't warmth and humanity between personal support workers and clients. The body becomes something to be acted upon — bathed, fed, treated — and kept in check. Our bodies need to be celebrated through all sorts of touch — the supportive touch of a friend, the safe touch of a PSW, the loving touch of a family member, the intimate touch of a sexual partner.
When I imagine receiving ADL support from a rotating cast of anonymous and exploited strangers, like so many do, my soul recoils.
Leah Lakshmi Piepzna-Samarasinha's Care Work also shows powerful examples of both toxic and beautiful care experiences.
One of the things Sam brought up was the dignity of risk. I think of my grandmother refusing to modify her downstairs bathroom as she grew increasingly frail. She refused to rearrange her furniture so she could navigate more easily with a walker and then a wheelchair. It meant that toward the end she slept in her dining room, struggled to get to the toilet, and couldn't access a shower. These were all her choices. They were her choices to make.
Not everyone is quite so stubborn about their decor. We all have our things that we're willing to take a little risk for.
The desire of a care worker to keep someone safe (or limit their legal liability) can turn the world into a prison. I briefly dated a woman who would fuss over me when I stood too close to the curb crossing the street and admonish me to be careful every time I slipped a little on loose gravel during a hike. That coddling, patronizing behavior got to me so much that I wanted to behave like an angry child in response. Her behavior seemed so obviously not cool to me because I’ve been blessed to have parents who’ve always given me the freedom to make my own decisions, mistakes included.
I can only imagine the toxic dynamics that develop when you can't opt out. It's so much harder to assert your right to self determination when you rely on someone else for ADL support and basic necessities. As care workers, we have to be careful to ensure that we're supporting someone, not controlling them.
Sometimes, especially when we're enforcing doctor's orders, the line between care and control blurs. I can certainly think of times when I’ve made the wrong call and tried to control people in the name of protecting them.
These three films, which reflect the shift towards giving people the platform to speak in their #ownvoices, are a reminder that people need to make their own decisions and tell their own stories.
As I was walking home from the theatre, people were marching through the streets protesting economic genocide. Among their demands is an increase to the Ontario Disability Support Program, which is too low to pay rent in Toronto, never mind pay for necessities and PSWs. This is an issue across Canada.
The other day as I was catching up with a friend, she excitedly told me the story of her boyfriend’s romantic proposal. Of course, they can't actually get married. If they got married he would lose his benefits. It's not enough to live on. People still rely on it.
So much progress has been made for disability justice. Sam’s interviews demonstrated that. We still have so far to go.
If you're in Canada (or have a VPN, maybe?) you can watch all three films online. Unlike almost all of the links I share, this isn't free.
My Disability Roadmap will launch on the New York Times soon. There's a feature length version in the works.
If you’re very online, you might already know Sam Habib from this moment (which is included in the film and made me cringe with my entire body).
If you're looking for tips from people with real caregiving experience, McMaster has an event with Nicole Dauz on self-care for caregivers today at noon EST.
If you’re interested in personhood and ethics, there’s a talk on Eva Feder Kittay's Contributions to Continental Philosophy with Ellen Feder, Joel Reynolds, and Bonnie Mann available on YouTube. Thanks to Donna Thomson for making sure I saw this!
Solidarity Against Disability Discrimination has been protesting for accessible transit in Korea.
Buffalo Niagara Partnership has created a calculator to highlight the benefits cliff, the reason so many disabled people effectively can’t get married or accept paid employment.