When you have a disability, people are quick to suggest finding a partner who also has a disability. I’ve dealt with my fair share of rejection, but what irks me is when people say that I should “settle” for “one of my kind.” As someone with cerebral palsy, I’ve always been tickled by the idea of having an able-bodied partner. I’ve had relationships with women who are able-bodied and women who have disabilities, and they were interesting experiences that have formed long-lasting memories. After reading Ben Mattlin’s new book about differently-abled relationships, In Sickness and In Health (Beacon Press), I realized that I just want what everyone wants: to be desirable and lusted after, but ultimately to form the kind of connection with someone that leads to a life together.
In Sickness and In Health is more than Mattlin’s “inspiring” story—though it certainly is inspiring. It’s a book about 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, a cat, and a turtle, established a successful career in journalism, and ended up living as happily ever after as it gets. Recently, I reached out to Mattlin to discuss his life, his book, and his secrets for a successful differently-abled relationship.
VICE: What can you tell me about yourself?
Ben Mattlin: I was born and raised in New York City, with a neuromuscular weakness called spinal muscular atrophy (type two, to be specific). I never walked or stood at all, and no longer have the use of my hands.
My parents insisted on my going to a private school, which wasn't easy in those days. Regular schools did not want to take a kid in a wheelchair. I became a reluctant pioneer.
So I was "mainstreamed," as they used to say—I prefer to say integrated. Anyway, I ended up going to Harvard. At the time, I was the only wheelchair-using undergrad. After graduation, I moved to Los Angeles with my then-girlfriend, now wife. That was 32 years ago, unbelievably. My wife and I have two daughters, now both in college.
How did you start your career?
Because no one would hire me, except on a per-assignment basis, I became a freelance journalist and essayist. I've written for many different financial magazines and websites, and my commentaries have been published in the New York Times, Washington Post, Los Angeles Times, Chicago Tribune, USA Today, and elsewhere, as well as broadcast on NPR.
To date, I've also written two books: the memoir, Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity, and now, hot off the presses, In Sickness and In Health, in which I explore interabled relationships through the prism of my own marriage.
How did the idea for In Sickness and In Health come about?
In a dream…
No, my first book dealt with growing up and more-or-less ended with my marriage. I began hearing from readers that they wanted to know more about my marriage. But I couldn't do that—I was too close to it. After all, I was living it every day.
Then I got to thinking that maybe there were some important, related issues that should be brought out. Issues of dependency and autonomy. Of sharing and privacy. I didn't want to hold my marriage up as some kind of model of interabled perfection, though. So I started talking to other couples. At the same time, I realized that I did have some questions about my own relationship: How had it worked for so long? Was it just something quirky about us, or did we share elements with other successful interabled couples?
As I described these and other quandaries to friends, they were all really encouraging about it as a book idea. Then I had to work out how to organize my research, how to make it into a good book. And, of course, when and how to reveal the identity of the murderer!
So what’s the key to a successful interabled relationship?
I wish I had an easy answer. Relationships are complex. What works in an interabled relationship is the same as what works in any other kind of relationship, I suppose: good communication, empathy, generosity, trust, respect, kindness, a sense of humor, open-mindedness, sharing, helpfulness, etc.
One important thing to keep in mind, though, is to be honest about the disability—or, I should say, about the difference between the one who has a disability and the one who doesn't. It's vital to talk about concerns and fears, but not in a way that will be needlessly hurtful to your partner. Both sides have to try to see things from the other's point of view. Also, money helps. Seriously: having adequate financial resources can make all the difference. Wheelchairs and attendants and other necessities are expensive.
And remember, when things get rough, don't blame the disability for all your troubles. Both partners can share in blaming unnecessary obstacles, and the unfairness of society in general. That can be a bonding experience, but it's not the disability's fault if, say, it's difficult to go out at night because the buses and nightclubs aren't accessible, or if you need a break from each other but have no way to pay for personal-care assistance. This is why we need to keep working on making our culture more welcoming, accepting, and supportive of people with disabilities.
How does having a disability affect sexuality and sensuality?
My particular disability doesn't affect my sexual functioning. It's true that many of us with disabilities are often accosted by strangers. Touched—even in intimate places—by personal-care assistants, doctors, or even strangers who wish us well and pat us on the back or rub our heads (seriously). That is, we are touched in ways that others aren't.
People apparently feel like it doesn't mean anything to make skin contact with us. But it does! It can make us feel objectified, infantilized, de-sexualized.
So many disabled folks feel a frustrated sense of sensuality or, to put it another way, a heightened sense of sensuality. It can make you really appreciate being touched or otherwise regarded in a sexual/sensual way when it does happen.
Does your new book smash stigmas surrounding sex and disability?
Maybe, but my book isn't just about sex. Maybe I shouldn't say that. It's got sex! Sex! Sex!! It's also about relationships, about how people who are unalike in a fundamental way manage to find common ground and more. There is a stigma around romantic relationships for and with disabled people, and yes, I hope the book at least makes people question their prejudices.
And by the way, there are many single disabled people who hold those prejudices, too—who believe they'll never find a romantic partner. My message is, it might not be easy, but it is possible and, as I found in researching this book, it happens all the time.
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