What's Happening?
Hannah Soyer's memoir, 'Dreams in Which I’m Almost Human,' delves into her experiences living with spinal muscular atrophy (SMA), a genetic condition that significantly impacts her life. Diagnosed shortly after birth, Soyer underwent spinal fusion surgery
at age eight, an experience she describes as traumatic, with 20% of patients developing PTSD. Her narrative is a collection of essays that explore the complexities of living with SMA, including the emotional and physical challenges. Soyer also reflects on the implications of medical advancements, such as the FDA's approval of a new SMA treatment in 2016, which she fears might shift focus away from supporting disabled individuals as they are. The memoir also addresses societal perceptions of disability, inspired by the media coverage of Jerika Bolen, a 14-year-old SMA patient who died by suicide in 2016.
Why It's Important?
Soyer's memoir is significant as it provides a personal perspective on living with a disability, challenging societal narratives that often portray disabled individuals as helpless. By sharing her story, Soyer contributes to a broader understanding of the lived experiences of those with disabilities, highlighting the need for societal support and acceptance. Her reflections on medical advancements raise important questions about the allocation of resources and the value placed on different types of support for disabled individuals. This work can influence public policy and societal attitudes towards disability, advocating for a more inclusive and supportive environment.
