BEING SEEN

A combination of personal memoir and shrewd examination of the ways in which society and media shape our perceptions of disability.

Sjunneson, who identifies as Deafblind, boldly explores her life in the context of living in an ableist society. For most of her life, she tried to hide her disabilities. Her parents raised her as nondisabled, placing her in mainstream classrooms without the use of accommodations or “special needs” services. Based on the feedback she received from those around her at the time, this route seemed the easier path to take. As Sjunneson explains, society wants “us to conform to a standard that makes sense to them.” She adds, “the education of a Deafblind child is often about how best to conform to the world.” As the author describes her life experiences, she is clearly and rightfully angry. “I have become an expert at lying for abled comfort, and it is exhausting,” she writes. “I’ve been trying to unlearn it.” Over time, Sjunneson has come to realize that her upbringing caused her to miss opportunities to interact with communities with similar identities. In attempting to navigate life independently, she has felt put on display and has endured an onslaught of abuse. She is frequently treated as helpless and has been discouraged from engaging in many activities, including having children. Sjunneson blames media tropes for much of society’s perception of those who are disabled and spends much of the book investigating the depiction of disabled individuals in film and literature. As the author stresses, she does not want to be pitied or viewed by anyone as an inspiration. “If you are inspired to do anything by this book,” she writes, “it should be the work of dismantling the ableist system we live in.”

A much-needed wake-up call for the nondisabled world.