From the Periphery

July 1, 2019

Human rights lawyer Justesen (disability rights; Univ. of Illinois, Chicago) interviews people in the Chicago area with various disabilities, from those with cognitive impairments and mood disorders to those with mobility aids, such as wheelchairs and canes, to create a moving, in-depth oral history of an oft-forgotten and ignored U.S. minority: people with disabilities. While all are personal stories, the core takeaway of each experience is the same; these individuals were treated with disrespect, ignored or infantilized, desexualized and separated from everyday life through a series of barriers to overcome in terms of careers, housing, or even going to a supermarket. All interviewees yearn to be treated with respect and given the chance to live a life that so many able-bodied people take for granted. This one-of-a-kind work allows those with disabilities to speak for themselves, giving readers a chance to see the individuals behind the diagnoses. VERDICT A perfect primer for anyone interested in disability studies, oral histories, and getting to know the disabled community in a more personal way.--Ahliah Bratzler, Indianapolis P.L.

Copyright 2019 Library Journal, LLC Used with permission.

July 15, 2019
An eye-opening collection of stories "about discrimination against individual people with disabilities and about exclusion of the group." Justesen settled in Chicago in 2014 after a career in Denmark as a human rights lawyer advocating for physically and mentally disabled men and women. Almost all the case studies here derive from oral histories she compiled in Chicago, inspired in part by the work of Studs Terkel. As the author shows, disabilities stretch far beyond those that are visible, such as blindness or the use of a wheelchair. Many of the disabilities of those she profiles may not be immediately apparent or constitute a condition generally outside widespread societal consciousness--e.g., deafness, autism, diabetes, dwarfism, severe arthritis, cerebral palsy, muscular dystrophy, depression, and more. For Justesen, negative treatment of individuals with disabilities constitutes a human rights violation. Throughout the text, she amplifies the repeated pleas of her interviewees: Please don't treat me as a person to be pitied or as someone who cannot perform a high-level job; please don't tease me or bully me, and please don't pretend I am invisible when you encounter me. The book suggests that people of color who are disabled are often treated worse than white men and women. Justesen wisely includes oral histories of her subject's paid caretakers as well as family members. As she clearly shows, poor treatment of the disabled yields negative ripple effects throughout society. The author opens the collection by illuminating the anger displayed by those who feel that they are considered "less than." In the next section, Justesen explains the reality of disability entering the realm of "social construct," akin to discrimination based on skin color or gender orientation. "Disability is not miserable," she writes. "But not being regarded, not being respected, being seen as less than, not being treated with dignity, all this is miserable. Barriers in the world can make living with a disability miserable." A mind-expanding collection of important stories.

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September 1, 2019
In this series of brief chapters, human-rights lawyer Justesen summarizes her conversations with over 30 adults with disabilities. The interviews center around the premise of disability as a social construct, addressing instances of prejudice, discrimination, and dismissal. Although the types and levels of disability vary (physical, visual, auditory, cognitive, mental), many sentiments are expressed over and over: public treatment that fed into negative self-image and feelings of worthlessness; anger, rage, and denial; feelings of invisibility; and isolation. Additionally almost all of the participants bring up instances where their civil rights have been ignored. These miscarriages of justice occur in educational settings, housing, and the workplace, leading many to seek support groups and become involved in disability-rights activism. Not all the stories have happy endings. However, several interviewees mention finding self-acceptance, coming to terms with insensitive strangers and ignorant officials, developing coping mechanisms, and learning how to deflect condescending pity or being held up as an inspirational icon. These first-person narratives are eye-opening, honest, and compelling.(Reprinted with permission of Booklist, copyright 2019, American Library Association.)