Disability Studies Quarterly
Spring 2006, Volume 26, No. 2
<www.dsq-sds.org>
Copyright 2006 by the Society
for Disability Studies


BOOK & FILM REVIEWS

Felstiner, M. (2005). Out of joint: a private & public story of arthritis. Lincoln, London: University of Nebraska Press. 218 pgs. ISBN: 0-8032-2030-8; $25.00

Reviewed by Ann Millett, University of North Carolina Chapel Hill

In Out of Joint: A Private & Public Story of Arthritis, Mary Felstiner tackles the epic task of writing about bodily pain. This "healing history" is a part medical, part autobiographical, and part cultural analysis (which prove hard to separate), of rheumatoid arthritis (RA), a treatable but incurable, autoimmune disease that inflames and swells the joints, wears down cartilage, and produces consequential impairments and fatigue. Of the many forms of arthritis affecting 70 million adults, or 1 in 3 Americans, rheumatoid is the second most common and the most severe, causing chronic, unpredictable, and debilitating pain. Inspired by this historian's inquiry and inability to find personal narratives of her disease, the book provides important research, such as analyses of biblical, literary, and historical themes of arthritis, as well as the history of medical treatments and privatization of arthritis from 1940 to present. However, the book's draw is Felstiner's personal voice and its process of going public.

This is a memoir in which arthritis isn't always central, yet like the disease itself, always present, ready to flare up and overtake the narrative. It opens with Felstiner feeling her first throb as a newly married graduate student in her mid 20s, following the birth of her first child. Subsequently, as she battles the disease, its impairments, and side effects of medications (many steroids), she experiences the many joys and trials of child-raising, marriage and intimacy, academic work, family illness, and loss. The most poignant comments surround her many fears: of the disease's progression, job discrimination, relying on others, and potentially losing that support. The complicated emotions of depending on family and friends physically and emotionally are articulated well and speak to many people.

Disability-conscious readers may not at first deem Felstiner's narration as politically progressive, nor personally liberating. Felstiner recognizes herself as impaired, but she does not self-identify as disabled (in a social sense) early in the book, and even makes a problematic comment about fearing a "decline into disability" (76). Yet cultural biases against disability shape the author's experiences and self-image, which she begins to discover. Felstiner's expressed guilt for burdening her family, combined with shame regarding her limitations, repressed anger and resentment, and the fear of stigma lead her to remain silent about her RA and attempt to pass as "normal," causing increasing problems. Yet, in 1993 she gets politicized. She requests accommodations (assistance with typing, for example) from her employer, San Francisco State University, which she is denied, leading her to question the extent of institutional compliance with the ADA. She finds arthritis absent among the illnesses covered under the law and realizes that her disability, like many others, is considered a personal problem, rather than a social issue, and is ignored by social assistance and healthcare programs. When Paul Longmore joins her University and becomes her friend and advisor, Felstiner begins to understand how social changes could improve her quality of life. Suddenly, she no longer swallows blame for her disease and its consequences.

The last few sections of book, particularly Part IV "Getting Help," are the strongest, as they best articulate key issues for disability studies and rights. Felstiner addresses her complicated relationship with the medical profession and the connections between disease and disability, as she considers questions regarding visibility versus invisibility of impairment and who needs or wants to be cured. Her narrative also explores fascinating intersections of disease with ethnicity, gender, and economics. As a scholar of the Holocaust, she identifies with Nazi eliminations of "degenerates" and with Holocaust themes of pain. Overlaps between women's rights and health movements and disability studies come to the fore, specifically topical for discussing a disease that strikes women over men 2 to 1 and which greatly impairs Felstiner's abilities to perform both stereotypically female domestic roles and her career. She also recognizes herself as privileged economically and laments that many with the disease can't afford treatment or work missed, as well as that she benefits personally from the inequality created by pharmaceutical markets. The concluding section finds Felstiner protesting in a Disability Rights march, and she asserts how the claiming of disability gains her senses of pride, identity, and community. Finally, she proposes what people with arthritis could contribute to and how they could benefit from the Disability Rights movement. Her "healing history" closes in acceptance — not a submission to pain so much as a liberating admittance and letting go of self-blame and shame. She even considers what she might have missed in her life without RA.

The book both documents and produces the author's "healing," by making her experiences with RA meaningful to herself and others. My main criticism would be its organization, for rich commentary is scattered throughout, like the random personal photographs and medical illustrations, and at times seems rushed for the sake of moving forward. Key ideas could be more thoroughly mined. Yet, perhaps the disjointed nature of the book is inherent to its subject, and it nevertheless significantly raises awareness and gives a voice to a silenced, pained majority.





Copyright (c) 2006 Ann Millett



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