Guy Choquet

My mother had cancer in 1977 and in those days, people were ostracized and stigmatized for having cancer. I witnessed it with my mom. My experience 10 years later caring for my partner, Sam, who had HIV, wasn’t that much different.
 
The medical community didn’t recognize caregivers as having any role. Even though we were living together when he first got sick, his mom had to give me permission to go into the ICU to see him. I had no legal rights. I continued to encounter institutional barriers through his palliative journey as well. 
 
I witnessed the evolution of supporting queer rights which makes it easier, but what hasn’t happened is that community connection when it comes to caregivers. With my experience with the early AIDS movement as an example, the healthcare team that worked in that HIV domain was queer-friendly and queer-knowledgeable. There was a sensitivity to intersectionality. I saw the movement evolve over time, with the greater involvement of people with AIDS. It’s the same thing that is needed for caregivers. You have to talk to the people that you’re supporting and ask them what they need. There needs to be an engagement and a dialog. It’s the only way it works, the only way. 
 
By being sensitive to the communities that need caregiving, we can begin to remove barriers. I learned about the concept of “The Last Mile” from the Red Cross. When you’re doing disaster recovery or relief, the last mile is always the hardest, but it’s the most important because it’s usually the most rural, the most disadvantaged areas. 
 
Caregivers of people in marginalized populations, or people with illnesses that come with a lot of stigma need to be listened to and supported in a special way. We experience larger barriers; they’re institutional and systemic. There should be an institutional framework that recognizes that each caregiver has a different role. There was no mechanism to support me. I was the one providing the caregiving, but then no one was caring about me.
 
I’m glad that CCCE is elevating the voices of LGBTQ+ caregivers and ensuring that we are included in the conversation about caregiving.