I was so inspired to read about Caregifted, an organization that provides all-expenses-paid respite vacations for parents who care for their children (including adults) with disabilities. This incredible project was founded by former MacArthur Fellow Heather McHugh, who describes its development in this interview. Filmmaker Adam Larsen is currently making a documentary, Undersung, about Caregifted participants and their stories.
The film trailer is all to familiar to many of us. Watch it. This project pushes back against the typical stale tragedy and triumph narratives surrounding family histories with disability. The videos and images reveal instead the intermingling of politics and aesthetics in caregiving, and the at-times extreme intimacy of care for children with complex or multiple disabilities. It strikes me that this would be less shocking if we as a society were more attuned to the undeniably physical nature of parenting and perhaps simply family in general. I see this with my own young son, but also with my relationship with my sister. She cannot communicate verbally and knows only a smattering of signed words, so we share our thoughts and worlds through touch, gesture, position, and eye contact. A hand resting softly on a knee, perhaps, or using sighted guide to help her navigate a store. Playfully raising and lowering our eyebrows or blowing kisses. Her head bent onto my shoulder, leaning into me on the sofa as I put an arm across her shoulder. There is nothing groundbreaking here except for the recognition of bodies as communicative forces. Sensorially and otherwise, there is nothing singular about it.