By Ben Mattlin
Why should the idea of an interabled couple be considered either noble or tragic? It shouldn’t. Born with spinal muscular atrophy and married to an able-bodied wife, Ben Mattlin sets out to show us in In Sickness and In Health that interabled couples are not as unusual as onlookers seem to think. While these couples have to untangle issues of dependency and need, patience and generosity, commitment and autonomy, and other hard-to-define dynamics, they have an intimacy all their own and love as anyone else. This is especially true of lesbian couple Christina and Janet, who are profiled in his book. This Pride month, we’re sharing selections of Mattlin’s interview of them in which he asks them about the challenges and joys of their long-term relationship.
Here’s what I know going in: Christina, sixty-two at the time we speak, is a professor of English and feminist, gender, and sexuality studies at Wesleyan University, in Middletown, Connecticut, and author of the memoir A Body, Undone: Living On After Great Pain. In October 2003, she suffered a severe bicycling accident—a twig got caught in one of her spokes, sending her flying. Yes, a twig. “My chin took the full force of the blow, which smashed my face and broke the fifth and sixth cervical vertebrae in my neck,” she writes. “The broken bone scraped my spinal cord.” The hyperextension of her neck caused an “incomplete” (meaning her spinal cord was scraped, not severed) injury at the C5–C6 level. Today, she has severe paralysis in her trunk and legs, with just enough function in her arms and hands to drive an adapted minivan. She uses a standard wheelchair, speaks clearly, although her breathing is sometimes strained, and has zero bladder or bowel control. She also copes with ongoing physical pain throughout her body.
At the time of the accident, she and Janet had already been living together for six years. Janet, seven years Christina’s junior, is a professor of women’s, gender, and sexuality studies at Columbia University’s Barnard College, in New York City. So when we first speak, they’ve been an item for more than nineteen years. Neither is interested in getting legally married, however, given the connubial history of paternalism, as Christina explains in her book—the “contracting” of a wife as a man’s personal property. Furthermore, they say, they’re not keen on turning a private, voluntary commitment into a government-validated obligation.
I understand, but it makes me smile. After so many have fought so hard and so long for marriage equality, which this couple supports, the institution itself still isn’t to everyone’s taste. The right to marriage isn’t an obligation to marry, after all. Still, it’s only fair to have the option. Equal access, freedom of choice—the principles go hand-in-hand.
How do they handle the frustrations? What keeps them from bickering with each other over these and other shared aggravations? Their answers are complex and surprising. “One of the traits that helps is generosity,” says Janet. “And of the two of us, Christina is the more generous, since she has to be patient pretty much all the time.”
I work this idea through my brain. Does it count as generosity if she really has no choice?
Janet goes on: “She has to decide whether to tell me about her needs. She has to be patient if I’m not able to help right away or if I don’t understand. That takes generosity, and there are all kinds of things she has to be generous about as we go through the day and I try to assist her.”
To understand better how they balance Christina’s requests and Janet’s constraints of time and patience, I bring up the example of the crooked window shades from Christina’s book. Christina says the way they’ve negotiated through such “rough spots” is by implementing what she dubs the feminist notion of process. “It’s important to go over what happened,” she explains, “to ask, What just happened? And try to figure it out and not just brush it away or get over it or try not to have it happen again. To look at it and understand the process. That way, every fight becomes a learning experience, and conflicts can actually bring us closer.”
They learned to do this—separately, pre-relationship, and together—by working with feminist organizations that were “run by consensus,” Christina says. For instance, as a graduate student she worked with a group that ran a shelter for battered women. “A collective,” she corrects herself, “that had our meetings by consensus.”
Into my speakerphone, I read aloud a passage from Christina’s book: “It’s a testament to the sheer durability of our feelings for each other that the love that was so vital and alive before the accident survived without a scratch.” Then I say, “A lot of couples feel deep love but can’t stay together after a traumatic event like yours. So does love alone explain your longevity as a couple?”
“Well, there are other qualities that shore us up. Financial resources, for one,” answers Christina. “We have money to pay for help, which many others don’t.”
Christina is able to manage on her own through most of the day, but her aide, Donna, comes every morning for about four hours to help her get showered and dressed. Donna also administers her twice-weekly bowel program—manually flushing out shit—and changes her suprapubic catheter every two weeks, which is the external cath for voiding the bladder. Donna helps with occasional “stander” therapy too, getting Christina into and out of a device that locks her into a vertical position for a time, to improve her circulation and bone density, among other purported benefits. “But once I get to my computer, Donna can leave [and] I go to work,” says Christina. Some days Christina has to leave the house to teach a class or attend a faculty meeting. “When I come home, there’s nobody there. I get my own food and put myself to bed.”
Donna has been helping Christina since she got out of the hospital twelve years ago. I’ve never had a personal-care assistant last anywhere near that long. They clearly have a good relationship. But when Christina is in New York, or when Christina and Janet travel, Janet does all the personal care. So I ask if they ever wish they had more hired help—or less, for that matter, for more privacy. “Always the trade-off,” Christina muses, without really answering.
“We’re truly fortunate,” says Janet then. “The balance between getting help and maintaining privacy is probably the best it can be, given Christina’s needs.”
Christina and Janet own up to having other advantages as well. “The material structure of our lives is extremely helpful,” says Janet. “We both have flexible jobs, so I can shift my teaching schedule to afternoons and do care for her in the mornings. That kind of thing.”
They also credit ongoing support from family and friends. Yet surely not everybody has been supportive, I say, having heard about and experienced enough awful behavior to know what I’m talking about. But Christina insists no one who knows them has expressed surprise over their staying together post-injury. “What about strangers?” I query, undeterred.
“It’s true, our union isn’t always immediately legible,” Christina allows. “One of the things I hate most is when we’re not taken as a sexual couple.” This was often the case even before her injury. Perhaps they don’t fulfill enough lesbian stereotypes for some observers to see them as sexual partners. (In her book, Christina jokingly refers to herself as “butch-femme” and Janet as “femme-butch,” a distinction without much difference and utterly lost on the general public.) What’s different now is some strangers make too much fuss. “The inspirational stuff is just ghastly,” is how Christina puts it.
When strangers misjudge their relationship, neither Christina nor Janet makes much of it, typically. But there are exceptions. “It depends how much energy we feel like exerting,” says Janet. “I couldn’t even tell you what the triggers are for me.” But she has reacted when people park in accessible spaces without a placard. “That’s not just a personal affront—it’s making life harder for everybody with a disability,” she explains.
Later, Janet lets me know that there may have been some who doubted the strength of their union. She doesn’t say so directly, but I infer it from the way she harps on the point that certain aspects of their lives—of their personalities—are immutable and nonnegotiable. “You can’t say, ‘Now that Christina’s disabled, you’ll find some other lover,’” she says, quoting what somebody must’ve said to her at some point. “Well, no. That doesn’t change. I love Christina. Christina is my lover.”
As she talks, I’m reminded of when my mother told me as a child about the painter Christy Brown, made famous in the Oscar-winning movie My Left Foot. “He couldn’t hold a paintbrush with his hand, but that didn’t stop him from painting,” Mom said. “He painted with the only limb he could control: his left foot.” The moral: disability doesn’t change who you are, or whom you love.
Perhaps nothing else matters more than the commitment to making it work. It seems I keep coming to this conclusion: people stay together because they wish and resolve to stay together.
In the days that follow, as I review my recordings and notes, my assessment shifts somewhat. Perhaps a loving commitment can conquer all, but clearly it helps if it’s armed with communication, patience, generosity, and financial resources. The lesson I glean from Christina and Janet comes in two parts: use the tools you’ve got, and value the process.
About the Author
Ben Mattlin is the author of Miracle Boy Grows Up and In Sickness and In Health: Love, Disability, and a Quest to Understand the Perils and Pleasures of Interabled Romance, and a frequent contributor to Financial Advisor magazine. His work has appeared in the New York Times, Los Angeles Times, Washington Post, Chicago Tribune, USA Today, and Vox, and on NPR. He lives in Los Angeles, California. Follow him on Twitter at @benmattlin and visit his website.