Elvina Scott is writing a memoir about parenting and caregiving a radically neurodiverse child. Through the lens of her own grief at the epic physical suffering of her daughter from intractable epilepsy and multiple surgeries, she pursues what grief is hers, and what grief is learned from the broad and pervasive tragedy narrative surrounding disability.
Elvina reckons with her own ableism as she examines her resistance to being a full-time caregiver. She exposes her family’s descent into life below the Federal Poverty Level using her personal experience to illustrate the failing social safety nets around long-term care and disability. In her work, Elvina invites us to look at ableism as the direct relation to White supremacy, racism, and sexism. She asks, whose life is determined to be of value, and why? She probes the spiritual question of what is lost when we dehumanize and segregate vast populations of neurodiverse people over time.
At MacDowell, she completed a second draft of her memoir. Away from her role as primary caregiver to her daughter, in the quiet and care of MacDowell, Elvina deepened the thinking on her manuscript. At once a social critique and exercise in self inquiry, the time at MacDowell in conversation with Fellows brought to the fore in her writing the transformative, necessary power of love. Elvina will continue work on her manuscript on scholarship at the Journey into the Common Good with Krista Tippett in July 2022 in Patmos, Greece, and at the PLAYA residency in November 2022. She is also an Ultrarunner training for the Moab 240 in 2022.