You remember that movie Guess Who’s Coming To Dinner, in which the elderly white parents can’t accept that their blonde daughter wants to marry a black man (even if he is Sidney Poitier)? It was 1967, at the height of the civil rights movement, and marriage equality was one of the final bastions to cross, the true measure of acceptance and integration.
Same goes for disability rights, even today. Put ramps in your stores and grab bars in your restrooms, but how will you really feel if your son or daughter marries one of us?
It’s a question I know all about. I’m a lifelong quad, born with spinal muscular atrophy, married for 26 years to a nondisabled woman. To be sure, there are challenges (as in any marriage). Yet there are also distinct pluses. Honesty, tolerance, patience and uncommon intimacy, among them. Still, that doesn’t stop people from wondering, from gossiping. So, to set the record straight, I decided to ask inter-abled couples about how they cope, what they find particularly difficult, and what tips they have for others.
For a youthful perspective, I talked to Shane Burcaw, the 23-year-old blogger and author of Laughing At My Nightmare, and his girlfriend Anna Reinalda, 21, a junior at the College of New Jersey, in Ewing, N.J. Like me, Burcaw was born with SMA. He uses a power wheelchair and weighs just 64 pounds. Living with his parents and younger, nondisabled brother in suburban Pennsylvania, he’s become a kind of unlikely Internet sex symbol.
“Four years ago, I had never had a romantic relationship,” he told me. “At times I thought I just won’t have a girlfriend. Ever.”
Then everything changed. “I got an email from this girl who said, ‘Hey, I read your blog and I love it,’” he explained. “I kind of rolled my eyes like I do whenever I get one of those emails. But she said she would really love to meet and hang out.”
What developed was a virtual friendship, conducted entirely online and by phone. Then she came over to visit. Burcaw’s family respects his need for privacy. One thing led to another.
“I taught her how to lift me, which was a big step! She was nervous but she wanted to try it, because we couldn’t really be intimate other than kissing with me sitting in the wheelchair,” said Burcaw. “I don’t have any type of lift device in my house. Anyway, we were able to be intimate once I was out of my chair. I was 19, and that was the most amazing experience of my life. It was different for her, obviously, but she didn’t mind it. I was able to do enough on my own that it worked out.”
Did she have any kind of prior experience with people with disabilities? “None at all,” he answered.
But that’s not the end of Burcaw’s story. As if in answer to my unspoken question, he told me that good sex alone wasn’t enough. “A few months later,” he went on, “I realized I didn’t really connect with her. The only reason I jumped on it was because she was the first person who really wanted anything more than friendship with me. But I didn’t want to break up with her if I was never going to find someone else.”
The fear of never finding someone else can be painfully intense. Yet break up he did. Things happen quickly over the Internet. He soon connected online with another woman who liked his blog. She became his second girlfriend. But after a few months, she decided she couldn’t take the pressures and uncertainty of his progressive disability. She dumped him, saying things like, “I’m giving up so much of my life to be with you,” he recalled.
Then late last year, Reinalda attended a speech he gave at the University of Connecticut. “It was clear early on that our personalities clicked,” he recalled. For one thing, they could communicate honestly and without fear. “We haven’t been afraid to say, ‘Let’s try doing this a different way,’” he explained.
They also share a wicked sense of humor. Asked if they’re dating, they reply almost in unison, “No, we’re pruning!” They’re looking forward to moving in together at some point in the future, if they can ever figure out the logistics. “We’re excited by the challenge,” he said.
Preparing for Marriage
For Anna Wan, a nondisabled 30-year-old with a Ph.D, currently an assistant professor of mathematics education in suburban Georgia, and Matt Watson, a 26-year-old student in Mississippi with — you guessed it — SMA, marriage is definitely in the cards. (Note: It’s purely a coincidence that all examples here are heterosexual couples in which the male partner has the disability and the female doesn’t. They just happened to be the ones who responded to my queries.)
“When I first met him in person, I was taken aback,” Wan confided. She had been introduced to Watson through eHarmony, so she knew he used a wheelchair. She just hadn’t realized how thin and weak he actually was. “But we connected so well, talking about things that we really have in common. Like values.”
She’d had to drive four or five hours to meet him on his own territory. He didn’t have transportation options. That didn’t bother her, but she did have second thoughts about what he calls his “disabled moments,” such as when his head suddenly falls over. “What helped with my initial discomfort was that it caused us to have a conversation about it,” she said.
She wasn’t comfortable enough, though, to get “that physically intimate,” she added, until five months later, after a trip home to her parents in California. They basically told her she didn’t have to settle for someone like that. “That’s when I made the decision I would be OK with his disability,” she said.
True intimacy — emotional and physical — may take time, honest communication, and planning. Wan and Watson still wrestle with the advantages and disadvantages of having his attendant around, for instance. They want privacy, but she’s not ready to take over all of the duties. “I stop at wiping his butthole,” she said frankly. “However, I’m always worried that someone else won’t do a good enough job.”
Beyond that, other obstacles arise. When she talked to her doctors about having children with Watson, she was shocked by their discriminatory attitudes. “Their responses,” she said, “are always disbelief — ‘you plan on having children with him?’”
Yet they remain optimistic. “Most of our stress comes from others’ negative reactions,” said Watson, via email. “But when I’m with her, all my problems vanish away.”
Making it Last
For a more seasoned perspective, I caught up with Alison and John Hockenberry. They have been married for 20 years. Twenty years before that, at the age of 19, John was in a car crash. His injury is an incomplete dural lesion at the T4-6 level, for those keeping score. He’s paralyzed from roughly the chest down.
Even in the early post-injury years, John had an incredible drive to succeed, to achieve, to not let his paraplegia limit his options. Five years post-injury he became a correspondent for National Public Radio, where he spent the next dozen years reporting from far-flung war zones. He went on to ABC News and television’s Dateline NBC, has won Peabody and Emmy Awards, and today hosts a live morning national news program on WNYC and Public Radio International.
Alison, who is not disabled, also worked at ABC News and has won several Emmy and Peabody Awards herself. She’s now a producer at The Documentary Group in New York. They had covered stories and traveled together as work colleagues before becoming romantically involved. So she had seen his disability in action, so to speak, and he didn’t try to hide it from her. They were unshackled from some of the hesitancies other inter-abled couples face. “I was always very upfront and independent about my physical needs and wanted a limited amount of help, wanted to prove myself as a fully independent partner,” John said. But in time, he found that “the inner questions of how being a person with a disability relates to your ability to be honest, to be forthcoming, to be able to ask for help, to be able to express your own needs — that was much more of a challenge.”
This leads to his Theory of the Disability Bubble. “The challenges for me have always been related to how the disability puts you in something like a bubble, which makes it harder to communicate, harder to ask for help and do the kinds of things that are really important in a relationship,” said John.
At which point I interrupted. “I always thought having a disability meant you were good at asking for help,” I said. “It removes artificial barriers of pride and invulnerability.”
No dice. Perhaps the difference in our views stems from the fact that his disability was acquired as a young adult, whereas mine is lifelong. “In my marriage today,” John responded, “if there are challenges related to the disability, they’ve been about how being a paraplegic makes you feel like you can’t ask for help. It makes it hard to talk about what’s going on inside of you. It makes you independent to a fault.”
Independent to a fault?
“Maybe I could rephrase that,” volunteered Alison. “John is very stubbornly independent in terms of proving and demonstrating to himself and others that he can get around just fine, doesn’t need help. That’s served him well in a lot of ways, and it was appealing and attractive to me. Maybe it’s a female thing, to find a very independent, bold person attractive. So those things definitely serve you well in many ways. But in a long-term relationship, communicating about your needs and hearing another person ask you what you need are also important, especially as you age. Being able to be vulnerable and not independent, and being able to communicate about that, is critical.”
“You need to be able to answer your kids’ wide-open questions about what’s going on with you,” said John. “You need to be able to say to your son or daughter, maybe four times a day, why you can’t walk. Or what happened to make you break your back. And you have to be able to do that and not be tired of it. You have to really understand how the child is learning how you are different from other people, and how that’s OK. You can’t be like, ‘Hey, I’m fine. Don’t notice me. I’m not just a wheelchair.’ You know? That doesn’t work with kids.”
Communication is Key
What about being in public, I wondered. Is John so famous that no one treats him like an incompetent imbecile just because he’s paraplegic?
“It was an issue, how other people saw us together,” he said. “People would only talk to Alison; they wouldn’t talk to me. Or they would conclude something about us. This was only an issue early on, because I had learned to tune it out. I was less conscious of people looking at me. But Alison was suddenly very conscious of being the center of attention when we were a couple. The only thing I can compare it to is being an interracial couple.”
But even these uncomfortable encounters only made them feel closer. “It really pushes you together,” John continued. “The way you’re looked at externally can produce anxiety, and you really need to talk about that together as a couple. It sort of makes you be honest. And then, as time goes on, you really need to make sure you’re aware of how different you are from each other. One person is disabled, the other is not. You need to make sure you’re really communicating at the deepest level, and sometimes disability can get in the way — particularly the idea that ‘I’ve got everything figured out’ and that kind of stuff. It can be a real hindrance. So you have to burst that bubble.”
I wanted to know about their decision to have children (they have five, including two sets of twins) and to use in vitro fertilization for their first two pregnancies. “Alison really drove that effort,” he recalled. “I was more passive. I had a real fear of failure. I feared it wouldn’t work. I feared we’d have to adopt. I feared having to go through the adoption process, where I might have to prove that I’d be a good parent, and I really didn’t want to be in that situation.”
As a high achiever and public figure, he wasn’t used to being found lacking, to being excluded. And he certainly wasn’t used to failure.
What about regrets? “If you could change one thing about your situation, what would it be?” I asked the couple. “More outside help, more privacy, a cure for paraplegia?”
“More babysitting,” answered Alison promptly, “so we could have more time together.”
Time — that may be the key for all these couples. They’ve been forced to address challenges other couples can put off or avoid altogether. They’ve had to face the reality of their physical differences, of how society treats them. Having already looked the beast in the eye, they emerge stronger, with few illusions or unrealistic expectations. That’s the secret glue, the special intimacy.
Who could complain about that?