Love, Sex, and Romance with Different Abilities

What works when the equipment doesn't

Posted Nov 27, 2017

Santeri Viinamaki/wikimedia commons
Source: Santeri Viinamaki/wikimedia commons

We talk about love, sex, and romance at the next Spinal Cord Injury Group meeting. I start with a request: “Would everyone share a romantic experience you’ve had that was really great, really awful—or simply funny?”  Everyone in the group is in a wheelchair; two have medical conditions that result in paralysis; the others are paralyzed below the waist from accidents. They are the most open group of people I know, so I’m surprised when there’s a long silence after I ask for stories.

Like most therapists, I’m used to waiting out a silence. But this one feels heavy, and really long.  Finally, Hal says, “Well, this is awkward,” and everyone cracks up.  Hal is about 55, attractive, funny, and purposeful. I’m pretty sure he comes to the group, as many members do, to help other people by sharing his experience. The younger guys, in particular, listen up when Hal talks.  When he continues, “I’ve got a funny one,” we all breathe a sigh of relief, and laugh again. 

“I’ve been married three times. All good marriages in their way.  My second wife and I got married at the Knights of Columbus.”  We all nod; it’s a common place for a celebration in our small community.  “The afternoon of the wedding, I’m on time when my limo drives up to the entrance of the hall. My son goes to get my wheelchair.  At that point I can get out of a car, so I’m hanging on, one hand on the open car door, and the other on the roof of the car, arms shoulder-high.”  We nod again: we can picture Hal balanced, waiting for his kid to bring the chair. 

Hal goes on: “I’m wearing a tux, one of those rented ones, and all of a sudden—”  He pauses for dramatic effect. “All of a sudden I feel my pants falling down.  Down, down, down they go.”  We’re all laughing with Hal.  “There they are in a heap around my feet.  I yell at my son: ‘Dominic, come here!’ ‘I’m getting your chair, Dad!  Hold your horses!’ ‘Dominic!  Now!’”  He pauses again.  “When he came around the corner of the car and saw me, that kid stopped in his tracks, his mouth hanging open.  There’s his pop, dressed to the nines, except where he’s down to his skivvies. Luckily for both of us, he recovered pretty quick and got me decent before too many people actually saw.”  He’s shaking his head at the memory.  “And I went and got married, and we had a pretty good run.” 

India chimes in.  “I have a sweet story.  I was living out in Arizona after I got hurt.  I had a roommate and we didn’t get along. One weekend we had a really tough time, and I needed to get out of there, away from her.  I decided to go talk to a guy I worked with, a really nice guy who I thought I could talk to about the situation.  I drive over to his house and knock on his door.” We can picture her: India exudes vitality. “He opens the door and is startled to see me, and suddenly I’m embarrassed: I haven’t called to ask if I can come over.  But he takes one look at me, sizes up the situation and says, ‘Come on in.’ I go in, tell him all about the crap with my roommate, and his response is ‘You’d better come stay here.’ And I did!  We became roommates, and slowly got romantically involved with each other, and it was a nice relationship.  It ended when I moved back here to work at the family farm.”  India smiles.  “I talked to his sister a year later, and she said that he hadn’t dated anyone since I’d left, and that she told him ‘Listen, Peter, you need to get out there.  No one else is going to show up on your doorstep like India did.  That was a once-in-a-lifetime thing.”  Everyone is smiling as she finishes.  I suspect that all the unattached guys in the group are wishing India would show up on their doorstep.

“I have a funny story,” Eleanor says.  “Soon after my accident, I went to a party.  In those days there wasn’t online dating.  This party was organized so that you were paired with another single person, by a matchmaker.  The man I was paired with came a little late, and was carrying a briefcase.  He was not disabled. He suggested that we go into a small room so we could talk privately.”  I, and India and Hal, are feeling tension already.  I remind myself that she has said it is a funny story.  “We talked, and he asked me about my accident and my recovery process, what I’d done in rehab, stuff like that. And then he left.”  She looks around the group.  “It was a little strange, but whatever.”  She shrugs.  “That night, I got a phone call from him, very polite.  He said ‘You are very nice, but you’re not disabled enough for me.’”

Rocco speaks into the sudden silence: “He’s a devotee.”  “Huh?” several people say.  “Yeah, devotism,” he says.  “There are people who get turned on by disability.  Some of them want to act like they are disabled.”  The group stares.  The reality they live every day?  Who would want that?  “And some of them want to be around people like us, as though we’re circus freaks.  They’re perverts.”  Rocco’s anger is cutting.  India says, “When I was doing online dating, if I put a picture of myself in a wheelchair up on the site, I would get literally hundreds of requests for conversation ‘in a private room,’ as they say.”  She shakes her head.  The younger people in the group are horrified.  Eleanor speaks up: “I just thought it was kind of funny. His problem, not mine."

“I have a happy story,” Max says next.  Max has been in a wheelchair the longest, over 50 years.  He’s a big guy, an artist, smart and, like Hal, confident, at ease with himself.  He begins: “I was 19 when I was injured. I had never had sex.”  The group shifts, a few people express sympathy. He goes on: “After a lot of rehab, I was able to start a life.  I was living in San Francisco, and I shared an art studio with another guy.  I was making sculpture; he was a painter.  One day when I came into the studio, he had a new model.  As he was getting his canvas set up, I started talking to her—and the rest is history. It was the 1960s, and we lived together for years before we got married.  It was funny when we got married: we went to City Hall, and my wife was nursing our third child when the judge came in.  He took one look at that, shook his head, said ‘Come on, you two, let’s get this legal,’ and married us in no time flat.”  Max looks around at the group.  “As we were leaving, he called after us, ‘You kids be good, now.’ We took it as a blessing.  And we have been good.  It hasn’t been easy all the time.  Carrie’s had to do a lot for me, and I’ve had to let her. But now it’s just good.  We talk, we go on dates, we hold each other.”

I see the younger guys hanging on every word.  “I wonder, Max, and you too Hal, if you’d say a little more about that.” They look at me, uncertain, so I go on.  “My husband was a lot older than I, and sometimes the equipment didn’t work too well.”  Everybody laughs, nods.  “We had to learn some other things to do when regular sex wasn’t an option.”  Hal and Max smile.  “Yeah,” says Hal. “I’ve learned that the thing that matters most is communication.  Talking, and listening. I didn’t know that in my first two marriages. My wife has taught me a lot about that, and it’s amazing how much better it is. Romance is communication.  Communication is what’s intimate.  And when you’ve got intimacy, and you add touching, you’ve got really good sex.” 

The next day I get an email from India, thanking me for coming to the group and saying, “I had never heard the older guys talk like that. It was a great session!” 

Darius Mcvay/wikimedia commons
Source: Darius Mcvay/wikimedia commons