Monday, April 23, 2018
Opinion

Column: I use a wheelchair. My wife of 28 years is able-bodied. Rethink your romantic assumptions

To you, it may be all about chocolates vs. flowers. But to me, Valentine’s Day raises questions about our society’s shared notions of the ideal romantic hookup.

I’m a lifelong wheelchair user who was born with a congenital, incurable neuromuscular condition called spinal muscular atrophy, or SMA. It has prevented me from ever walking or standing and, more recently, from using my hands. But it’s never stopped me from thinking, feeling, having opinions, having sex, or marrying and raising a family.

For 28 years, I’ve been married to a non-disabled woman. Together we have two college-aged kids. Does that surprise you? Why? Love, caring and commitment often flourish regardless of superficial differences.

Perhaps ours is an unusual pairing, but we are far from the only inter-abled couple I know. Still, many outsiders treat us with a certain disbelief. In public, we frequently encounter oddly distressing reactions. At best, strangers assume we’re not together — as in the helpful person who holds the elevator door for me and tells my wife to go on ahead. "Thank you, but we’re together," one of us usually says. (Even then, some do-gooders feel moved to praise us as inspiring! Nice, I suppose, but is it really appropriate?)

At worst are those who assume she’s my nurse — who ask her what my name is, or whether I need the bathroom. "Your husband?" they say in disbelief when my wife sets them straight. One time, some dolt went so far as to question whether I was really the father of our children.

Many folks, I concede, aren’t used to seeing couples like us. We don’t exactly fit the common image of conjugality. What I don’t get, though, is why in this day and age — when our society has embraced interracial, same-sex and other varieties of wedlock — is it so hard for people to understand our brand of love? Why do so many still resist the idea that ours is a normal relationship, not a superhuman phenomenon? Does inter-abled romance really represent a kind of final amatory frontier?

It shouldn’t. It is not a new concept. What are Beauty and the Beast, The Phantom of the Opera or The Hunchback of Notre-Dame but stories of longing between the physically disenfranchised and the physically fit?

Of course, most of those tales didn’t end so well, from a disability perspective. Unrequited yearning was the narrative norm for romantically inclined people with disabilities. Even the Beast had to lose his beastliness before he and Beauty could live happily ever after — that is, he had to become cis-heteronormative, able-bodied and good-looking.

Granted, there have been exceptions. For example, the 1946 film The Best Years of Our Lives upended the genre with its mostly happy ending. In it, Harold Russell portrays a veteran who lost both of his hands during World War II. His non-disabled sweetheart convinces him that he doesn’t have to live a life of lonely self-pity. (Russell, who lost his hands in an accident while serving in the Army, won an Academy Award for the role.)

But the underlying theme of emotional rescue still paints disability as a problem to solve, rather than a common trait or fact of life. We see the trope in such recent movies as Me Before You and the putatively true Breathe. This sort of cliche is so prevalent that author Kenny Fries has proposed the "Fries test" to assess disability portrayals in the media. Inspired by the Bechdel test, which first appeared in 1985 and evaluates cinematic depictions of women, the Fries test asks: Do the disabled characters have their own narrative purpose other than the education and profit of a non-disabled character? Is the character’s disability not eradicated either by curing or killing?

The unfair characterizations are so pervasive that one recently engaged partner in an inter-abled relationship complained to me, "I’ve searched libraries and databases, and I can find no examples to help convince my parents that this is okay!"

People with disabilities and their intimate partners simply want to be accepted, not sanctified or pitied. Some will even tell you they enjoy a deeper degree of intimacy than you could ever imagine. If so, it likely comes from a kind of interdependency, a heightened sense of give-and-take.

So, on Valentine’s Day — as at any other time — don’t write us off. Reconsider your romantic assumptions. I’m sure that, by celebrating love in all its shapes and variations, you’ll see there’s more to it than you ever imagined.

Ben Mattlin is the author of "In Sickness and in Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance."
© 2018 Washington Post

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