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The perils and pleasures of inter-abled romance

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As an adult almost 30 years out of college, I cannot name the universities any of my friends and colleagues attended — unless they went to Harvard, in which case it comes up frequently, usually as shorthand for “I’m right.”

So it’s an ominous sign when Ben Mattlin drops his Harvard credentials into the second paragraph of his trenchant yet frustrating new book, “In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance.” Mattlin, author of “Miracle Boy Grows Up” about his life with a genetic disorder called spinal muscular atrophy (SMA), is cheerful, witty, inventive and, yes, very smart. The premise of his new book is terrific: In a series of 15 chapters, Mattlin interviews people with significant disabilities — including SMA, multiple sclerosis, brittle bone syndrome and paralysis — who, like him, have found love with able-bodied partners.

The breadth of his research is impressive. There are young people and older ones, interracial couples and one lesbian pair. Mattlin deftly draws out poignant details, such as the heartbreaking moment when a paraplegic mother can no longer change her squirming baby’s diaper or the rueful one when the girlfriend of a disabled man she met on eHarmony says she stops at wiping him. “That is the one thing I won’t do if I don’t have to. However, I’m always worried that someone else won’t do a good enough job.”

There is, frankly, a ton about poop in this book. Several times, Mattlin poses the question: How do you sustain romance in a relationship where one partner must deal constantly with the fecal matter of the other? The answer, over and over, seems to be you simply do.

Mattlin refers to his wife of 26 years as M.L. and says in the short but charming chapter on their marriage that she “would sooner do things than talk about them.” But she gets all the best one-liners, such as the terse advice she gives another spouse: “Don’t wear white shoes!”

“I get it,” the other woman says. “So I don’t look like a nurse.”

He’s a talky, 120-pound Jewish guy in a motorized wheelchair, unable to pick up a pencil or feed himself. M.L. is a sturdy, no-nonsense Protestant schoolteacher who carries him, cleans him and changes his colostomy pouch.

“She can get me comfortable in my chair when I can’t even figure out how to ask or what to ask her for,” Mattlin writes. It’s a stunningly simple definition of love. If only he’d let it stand.

Instead, he muses about whether their “symbiotic intimacy” is tied to their “interabled couplehood.” He wonders if they arrived at it naturally or developed it out of will. He asks, after 26 years, if it will last. Then he responds to himself:

“To shed light on these and other related mysteries, to gain a stronger self-knowledge and advocate for others who may be facing similar questions and judgments, I embark on a quest to zero in on the glue that binds M.L. and me, to study what sticks interabled couples together and perhaps simultaneously give hope to those who are struggling with the mating game.”

This is just the first line of a long, multiply-metaphorical paragraph listing Mattlin’s reasons for writing “In Sickness and in Health.” And here, we go back to the Harvard problem. Throughout, Mattlin claims to be breaking new ground with his writing about interabled romance — ignoring the astonishing and gorgeous work of writers like Nancy Mairs (“Sex and the Gimpy Girl”) and Mark O’Brien (“On Seeing a Sex Surrogate”).

Still, there is plenty to love in Mattlin’s latest book. He writes warmly about relationships at their finest: full of generosity and compromise and respect. Without complaint or self-pity, he depicts the very real barriers some interabled couples face — such as not being able to fly on commercial planes or giving up their privacy when a caregiver is needed — and how they adjust.

Unfortunately, his narrative style is basically show, tell, tell, tell, with each vignette followed by a stream of analysis, opinion and jokey asides. Most of the time, this overage only diminishes the beauty of a scene. But occasionally it is glib, as in the case of this casual aside:

“Parental expectations can so often become self-fulfilling prophecies,” Mattlin opines. “I’ve noticed a trend when I talk to those lonely, horny disabled people who are desperate to get laid. Invariably their parents saddled them with the dire belief, the bleak certitude, that they would be alone forever.”

Not only does this belie a point he makes elsewhere in the book — that disabled singles with financial means clearly have an advantage — he contradicts his own theory that parents with bad attitudes cause loneliness. In one interview, Dorene, a woman with spina bifida, recalls that her mother told her that she’d never find a husband and “sex wasn’t even in the cards.” Dorene went on to a vigorous dating life and has been happily married for 20 years.

Sadly, it is in the chapter on former New York Public Radio host John Hockenberry, who has a spinal cord injury, and his wife, Alison, where Mattlin’s commentary proves most problematic. After the writing of “In Sickness and in Health,” but before its publication, Hockenberry was accused of sexual harassment of female colleagues and guests.

When Mattlin, who admits to being star-struck, observes the Hockenberrys’ ability to be “in touch” and to “share a closeness that other couples have to work harder or longer to achieve,” readers are left to wonder if this interviewer sometimes conjures up what he wants to believe.

Ann Bauer is the Minneapolis-based author of “The Forever Marriage.”

By Ben Mattlin

Beacon. 248 pp. $27.95

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