In sickness and in health Love, disability, and a quest to understand the perils and pleasures of interabled romance

Ben Mattlin, 1962-

Book - 2018

Ben Mattlin's wife, ML, recalls falling in love with his confidence and sheer determination. On one of their earliest dates, he persuaded her to ride on his lap in his wheelchair on their way home from an Elvis Costello concert. Thirty years later, they still travel like this from time to time, undaunted by the curious stares following them down the street. But In Sickness and in Health is more than an "inspiring" story of how a man born with spinal muscular atrophy--a congenital and incurable neuromuscular condition--survived childhood, graduated from Harvard, married an able-bodied woman, built a family with two daughters and a cat and a turtle, established a successful career in journalism, and lived happily ever after. As... Mattlin considers the many times his relationship has been met with surprise or speculation by outsiders--those who consider his wife a "saint" or him just plain "lucky" for finding love--he issues a challenge to readers: why should the idea of an "interabled" couple be regarded as either tragic or noble? Through conversations with more than a dozen other couples of varying abilities, ethnic backgrounds, and orientations, Mattlin sets out to understand whether these pairings are as unusual as onlookers seem to think. Reflecting on his own experience he wonders: How do people balance the stresses of personal-care help with the thrill of romance? Is it possible that the very things that appear to be insurmountable obstacles to a successful relationship--the financial burdens, the physical differences, the added element of an especially uncertain future--could be the building blocks of an enviable level of intimacy and communication that other couples could only dream of? What emerges is a candid glimpse into the challenges and joys of interabled love--from the first blush of sexual awakening to commitment and marriage and through to widowhood.

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Subjects
Published
Boston : Beacon Press [2018]
Language
English
Main Author
Ben Mattlin, 1962- (author)
Physical Description
248 pages ; 24 cm
Also available in electronic format
ISBN
9780807058541
  • Introduction
  • Part I. First Comes Love (And Sex)
  • M.L. and Ben
  • Hannah and Shane
  • Wanda and Kevin
  • Rachelle and Chris
  • Part II. The Long and Winding, Road
  • Alisha and Jared
  • Alice and Bill
  • Felicia and Juan
  • Laurie and Tim
  • Part III. Aging with a Disability, or with a Disabled Partner, and Other Joys
  • Alison and John
  • Dorene and Steve
  • Gloria and Sebastian
  • Part IV. Twenty/Twenty Hindsight (The Long, View)
  • Laurie and J.R.
  • Christina and Janet
  • Simi and David
  • Colleen and Max
  • Conclusion
  • Acknowledgments
  • Index
Review by Library Journal Review

"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 Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

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. Copyright Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.