In Sickness and in Health

January 1, 2018

"It's important for marginalized peoples to set the own terms of their identity," says journalist Mattlin, who has spinal muscular atrophy. Here, the author profiles interabled couples, his term for romantic relationships between individuals who have disabilities and those who don't. Martin interviews people with muscular atrophy as well as those living with Ehlers-Danlos syndrome, spina bifida, multiple sclerosis, paraplegia, and quadriplegia. By sharing his experience and several interviews, he finds that disability prompts forced intimacy, bringing couples closer. Conversations with interviewees such as author Christina Crosby show that some people living with disabilities still have some forms of privilege, including financial and educational. At times, Mattlin shows his own privilege by questioning subjects who choose not to use home care attendants owing to financial or personal reasons. Yet, the strength of this work lies in stories from people who are experiencing disability for the first time as adults. Should they continue working, start a family, risk traveling, engage with unsupportive family? Disability and sick are charged words; not all identify with the labels. Some, like Mattlin, reclaim the outdated term cripple, wondering if they're being pitied or put on a pedestal. VERDICT A thoughtful spotlight on often-unheard voices for all interested in how communities define and redefine themselves.--Stephanie Sendaula, Library Journal

Copyright 2018 Library Journal, LLC Used with permission.

November 1, 2017
A collection of stories of interabled couples who navigate their issues with success.Born with spinal muscular atrophy, Institutional Investor contributing editor and NPR commentator Mattlin (Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity, 2012) didn't expect to find an able mate, marry, and father children, yet he did all of this and much more. He knew his relationship with M.L. worked, that they had a strong, loving bond, despite the difficulties of him needing an attendant to take care of his basic needs, and he wondered how other interabled couples had succeeded in their own lives. The author interweaves commentary about his own disability and other health issues with multiple stories of other couples. Some have SMA or other muscular wasting diseases, while others have become disabled through car accidents and war. Mattlin discusses the aspects of falling in love and becoming intimate and how many have mentally separated this aspect of the relationship from the routine care of bodily functions. He examines life with an attendant and how the assistance can help couples maintain their intimacy and reduce their stress despite the expense and lack of privacy. He tells of the difficulties and joys of becoming a parent when one cannot move and the added levels of tension parenthood brings to a relationship. He also delves into the realm of older couples where the able-bodied one is getting too old to care for the disabled partner and what that means for both. Throughout, Mattlin expresses himself clearly and succinctly, without an underlying tone of self-pity. His interviews with other couples also portray steadfast relationships where each has thrashed out problems in ways that allow them to stay together.Moving and informative stories of "uncommonly intimate and enduring" interabled partnerships.

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