We tend to leave people with disabilities out of end-of-life conversations. The research shows that we are doing this to avoid challenging behaviors that may come up, and we are doing it to avoid our own discomfort with the topic. Both of those are very valid reasons! However, the research also shows that having conversations…
Grief has always been social. We mourn in the company of others, and the people around us shape what our grief is allowed to look like. For most of human history, that social circle was small: family, close friends, the people who happened to be geographically near. Social media changed that. It connects grievers across…
If you’ve followed my earlier posts on consent, you know I believe it’s worth slowing down and teaching well. So that’s exactly what I’m going to do, one letter at a time. Many educators use the acronym FRIES, created by Planned Parenthood, to break consent into five parts: consent should be freely given, reversible, informed,…
I would be remiss if I didn’t acknowledge the role that other people play in how someone with a disability learns about consent. Consent isn’t only a skill that gets acquired in a lesson. Real consent means knowing you can say yes and, just as importantly, that you can say no, even when it goes…
Individuals with disabilities face double the risk of experiencing sexual violence in their lifetimes compared to their nondisabled peers, and adults are especially vulnerable (Mailhot Amborski et al., 2022). Among adults with intellectual disabilities, an estimated 1 in 3 experience sexual abuse, with even higher rates reported among males (Tomsa et al., 2021). And the…
I recently came across the story of a woman with Down syndrome who had been cared for by her mother for her whole life. The mother got older, and caring for her daughter got more difficult. The woman’s sister kept raising the questions about what was going to happen when Mom could not longer care…
The reason that I first got into Thanatology (the study of death, dying, and living) was because I noticed that many of the disabled adults I work with were experiencing the death of caregivers. While the death of a caregiver is hard for anyone, it seemed to be much harder for my clients. This was…
Death is one of the most universal human experiences, and yet, for many caregivers, parents, and support staff, it remains one of the hardest topics to bring up. A common concern I hear is that parents/caregivers and staff don’t know what to say in those moments when someone is dying or has died. But picture…
Are Staff Members Friends? Why This Question Matters for People with Disabilities When I work with people with disabilities, one of the patterns I see most often is the blurring of the line between paid staff and genuine friends. This isn’t anyone’s fault. The staff I work with genuinely like the individuals they support. But…
I’ve been studying thanatology (the study of death, dying, grief, and loss), and I’ve noticed that many of its essential ideas should also be applied to people with disabilities. Recently, I’ve been reading about maintaining dignity during end of life using the Dignity Conserving Model developed by Harvey Chochinov. There is a very real potential…