Author: Ben Mattlin

Publisher: Beacon Press

ISBN: 9780807058558 (ebook)

ISBN: 9780807058541 (hardcover)


 A Search for Compatibility

Many of us living busy lives do not stop to think of how disabled people live. The very thought of living with disability is anathema and does not occur unless we ourselves or someone close to us is affected. There are however, many people living with severely crippling disabilities who make the most of the resources at hand and go on to prove that they are at least as talented and productive than many others and the key people that the disabled invite into their lives are not there to express sympathy, but in a mutual give-and-take kind of relationship.

This is a book where the author is a freelancer with congenital SMA (spinal muscular atrophy). Despite his condition, he has been a Harvard graduate (perhaps the first with SMA) and authored a book on his life challenges, especially on his life with his wife Marie-Lois (referred to as M.L.) . That book, his first, was a success and the author was repeatedly asked questions, mainly about his marital life. This book is the requested sequel, where he tells the story of his marital life by intertwining it with stories of and conversations with other ”interabled” couples at different stages of their lives in order to make some deductions about such unions, the fires and desires that keep them going and prevent the relationships from getting sour.  

The author has divided the period of marital union into four stages. The first stage is the meeting and coming together of the “interabled couple”. Four different cases are studied, three of whom were born with their debility, the first of them being the author himself. The fourth was injured in a swimming accident. It turns out that sexual activity is no bar among many “differently abled” beings, even as it has to be more considerate than usual. It is the compatible sharing of bodies that brings “interabled” couples together, before they know that their relationship is worth pursuing.

The second stage that is discussed is when an “interabled” couple goes in for the long haul. Two of the four couples interviewed have had children to nurture, another has two dogs to care for and a third had a flourishing business in self-development.

And the effect of these insights was to reveal a new timbre of trust and faith between us, a deeper love that proved stronger and more passionate than youthful love.”

In each of the above contexts,the author mentions an incident that seriously threatened his own life and how they affected his familial bonds.

The third stage of the book deals with the challenges faced by a couple who are no longer young and on the road to aging together. In this section, the story of three couples are taken up. The ubiquitous problem of finances and the help available from the government is taken up among other physical issues such as changing symptoms. As in the above case, the couples interviewed mentioned that they have learnt to enjoy the small pleasures of life and to choose to regard their liability as an asset. Some of those interviewed from this and other sections are activists for disability rights.

In the fourth section of this book, four couples from a general category are studied, one of them being a lesbian relationship. Here, the role of partner as primary caregiver is taken up from different viewpoints, the realization of the need to prioritize urgent needs from ignorable whims and the advantages of consensus building and stress analysis are taken up.

The one receiving help has to be at least as generous as the one giving it.”

In conclusion, the author makes the following submissions:

All relationships face challenges and rely on strengths...Disability makes a convenient scapegoat….Those in interabled unions may have an advantage (over others), we’ve faced many of these truths sooner not later. What we’re left with are few illusions or unrealistic expectations”.

This book is an eye-opener. It provides a view into the lives of all those individuals who live with debilitating disability and still carry on with indomitable fortitude. Besides, the author has exposed himself unsparingly, holding nothing back in his comparisons and comments. I recommend this book warmly.