Decolonizing Grief Support
Toward a Vocabulary of Care
I've been teaching and talking about decolonizing grief work for more three decades,
so, this isn't new work for me. I want to say that plainly at the start, because language critique has become fashionable lately and I've watched it arrive with a great deal of noise and very little history behind it.
In 1994, my first book, Dear Cheyenne, explicitly told people to stop trying to take my grief away from me. It was mine. And I've been screaming it since then.
Fast forward through my PhD program and a tenure track position, and in 2011, we published on the ATTEND model in Death Studies. It was built as an interdisciplinary framework for physicians, social workers, therapists, nursing staff, and anyone who has worked with or is in contact those in traumatic bereavement. The ATTEND model named six elements: attunement, trust, touch, egalitarianism, nuance, and death and grief education.
Egalitarianism is key here. The power arrangement between a support person and griever was itself part of the harm, and no technique applied from above the relationship could help. This word isn't just rhetoric. It is the argument.
The following spring I wrote a blog post about the American Psychiatric Association's plan to remove the bereavement exclusion from major depressive disorder. It went viral in March of 2012, and the MISS Foundation began sending open letters to the APA opposing the change. Our objection wasn't abstract. We wrote that the change would allow clinicians diagnose a major mental disorder in a bereaved parent or person as early as two weeks after their child, or other beloved, died, using criteria any grieving person would recognize: sadness, emptiness, crying, changes in sleep and weight, guilt, loss of interest. We lost that fight. The exclusion was removed anyway.
Then Dr. Jeffrey Lacasse and I went looking for what actually happens to bereaved parents in practice. We published an observational study in Death Studies on the prescribing of psychiatric medication to parents after perinatal and neonatal death. Dr. Kara Thieleman and I published a critical analysis of the grief-related controversies in DSM-5 the same year.
Every one of those papers was making the same point from a different angle: the vocabulary a system uses on a suffering person is not neutral, and it never was. It has always been, and will always be, about who holds the power.
That work continued. In 2022, Dr. Allen Frances and I wrote in The Lancet Psychiatry that DSM-5-TR had turned normal grief into a mental disorder. In 2023, we published prevalence data showing that under those criteria, roughly four in ten bereaved parents and nearly six in ten people bereaved by overdose meet the threshold for a diagnosis yet more than 90% felt their own reaction to the loss was normal and not a disease or disorder (Thieleman, Cacciatore, & Frances, 2023).
The idea of decolonizing grief work might just start with our language. Words have power. But just changing the language isn't enough. Softer language laid over an unchanged practice is its own kind of performance, and I would rather you keep saying "treatment" honestly than say "care" while running a treatment plan with a timeline and a discharge date. Let's not pretend to decolonize when we aren't willing to really do the work.
This is one small start, the vocabulary that a thirty-year argument produced. Every substitution here comes from watching what particular words do in a room where someone's child, or other much loved one, has died. "Non-compliant" does something. "Closure" does something. "Prolonged grief disorder" does something, and what it does is convert a love into a billable pathology at the two-week, or six-month, or twelve-month mark.
Egalitarianism was the third principle in 2011. It's still the whole project. These words are just where it shows up. For our CBC providers, this is such an important concept to integrate.
