The advice from my doctor was to check myself into a nursing home for the rest of my life, but I wanted a career, adventure, love, and sex
Recently a friend asked me how my love life was going and I drew a blank. Love life? What love life?
It’s not just that I’m 57: I also live with a disability. In 1976, at the age of 18, I dropped out of college after three semesters and went hitchhiking alone in Europe—to find myself. Outside of Granada, Spain, a truck hit the car I was riding in while I slept in the back seat. I woke up on the side of the road, paralyzed from the chest down.
The injury was devastating, but the societal condemnation that came on top of it was worse. This was the tail end of eugenics. In the United States, we were still sterilizing people with disabilities against their will. The kindly advice from my doctor was to check myself into a nursing home for the rest of my life to avoid being a burden on my family.
No way was I going to allow myself to be shut away from life. I wanted an education, a career, adventure, love, and sex. But in the climate that prevailed at the time, people were shocked that I dared to hope for romance and physical intimacy. It was as if, somehow, my disability made me less human to them. I get it. I was born into the privileged, able-bodied class. I was taught all of societies’ biases: that people with disabilities are different, sub-human, to be avoided (which is why we segregated them). And yet, when I became one of “them,” I was, still me. And I’m still able in so very many ways: I’m a lawyer, conflict resolver, leadership development expert, writer, professional storyteller, improviser, world traveler and kick ass spades player. I have a social life, opinions, ideas and feelings just like everybody else.
My self-esteem as a woman, however, took a big hit. Intellectually, I know it shouldn’t, but the cultural messaging of revulsion and burdensomeness around disability that I was taught as a child and my inability to meet conventional definitions of womanly beauty, make me feel unattractive. Heck, some people won’t even talk to me because of the wheelchair, much less date me. Yet my passionate desire for life and love is fully operational.
Returning to college a year after the accident I was as insecure as the next girl about my body, and then some. We’re not talking cellulite or muffin top here, but withered legs, a slumping stomach and a bunch of ugly scars. (Of course, as so many women do, I see myself in the worst light possible). Then there were the nitty-gritty matters: my anxiety about how and when to tell a romantic interest that I control my bowel and bladder in a manner wholly unfamiliar to most people. Or explain that I have no sensation from the chest down so they don’t think I’m casting aspersions on their masculinity when I ask: “Is it in yet?” Still, none of that stopped me from wanting, needing and pursuing love, just like everyone else.
My one boyfriend in college, a blue eyed, dark haired hunk, raised in Hawaii with the Aloha spirit, told me all women are beautiful no matter how they look. (God love him!) With him I learned that approaching sex was easier than I thought it would be. Information emerged organically as we spent time together. He asked simple questions: “Why are you in a wheelchair? What happened? What’s that like?”
As we reached different stages of intimacy, he asked more questions. “Can you feel this? Is it okay if I move you like this? Can you roll over?” Our fun, healthy sex life came down to good communication, just as it does with every couple in a new sexual encounter. But some of his friends weren’t so enlightened, and asked him if my body was cold like a cadaver. (Seriously, a cadaver?! In fact, it was and is as nice and warm as any other living, breathing body).
I graduated from law school and got a good job (no small thing when the unemployment rate for people with disabilities is 65 percent). It was easy and fulfilling for me to fight for my rights–non-discrimination in hiring, equal pay, architectural access–but hard to fight against cultural norms of beauty. I did try. I was on many panels for doctors and medical school students about sex and the disabled. But even some medical professionals were capable of questions like: “Is this really an issue? Why would a man find you attractive?” (Ah, there is nothing like rejection in front of a crowd).
In this social environment whole years of my life passed with unrequited longing on my part. (Even able-bodied women my age will say this sounds familiar). Most men tell me I’m a nice girl, but … They’re looking for trophies; women their male friends will envy. Fortunately, there are some men, a few men, who don’t see the wheelchair at all.
Outside a jazz bar in Denver on Labor Day weekend, 1983, my friend and I met the man she would marry, who introduced me to the man I would subsequently marry. I was 28 and marriage was great. Our careers were going strong. He was a computer scientist. I was a civil rights lawyer. He was a nurturer and I was fiercely independent. Together our lives were better, easier than they were apart. He cut the lawn and did the laundry. I grocery shopped, cooked and paid the bills. We built our dream house. And people told me all the time what a saint he was for marrying me. Which was so insulting, suggesting that I brought nothing to the table. And yet, I felt lucky, as if I had been pulled off the seconds shelf.
Then, we divorced. He had a mid-life crisis and ran off with another woman—sigh: Yes, the cliché applies to the disabled and able-bodied alike. People often asked if I was disabled before we got married. When I told them I was their response was: “Oh well, he knew what he was getting himself into then.” (Honestly, people have no idea what they are saying sometimes).
Back in the dating world at 43, during the 2000s, my insecurities—the beauty and body issues—returned in force. I had been loved for a long time and I want that again, so I tried everything; the Internet, singles events, singles bars, organized singles dance parties (that last one may not have been the best choice for me, all things considered!). But my peer group hadn’t shed the negative messages about disabilities that we were all taught as children.
Everyone is just one car accident, fall down the stairs, disease, violent crime or shallow dive away from becoming a member of the club.
At 50, on a business trip to Cairo, I met someone and we really hit it off. Short with wavy hair, he had the longest lashes I had ever seen on a man, and was much younger than I. We had a crazy-fun affair for two years. The most refreshing part of it was that our relationship challenges had nothing to do with the disability. The alliance was doomed to fail for reasons of distance, religion and the age gap.
Then one night I met a man at a concert and the connection was so strong that I thought my life was about to change. It was wonderful, and scared me, and made me hyper self conscious about being disabled. The prospect of romance is really the only thing that makes me think of myself as disabled. Having a physical disability is just my life. Everything I have to do because of it is background noise.
The man invited me for a drink. The only way out of the building for me was a metal wheelchair lift. I cringed as it clanged and banged on the way down. I felt like the Goddess of Thunder (not in a good way). Side by side, we made it to the sidewalk. It was hard for me to push the chair because of the cross slope for rain run off, but I didn’t want to ask for help and appear weak or needy. We talked until two in the morning and he never asked me anything about my disability. He didn’t see it, and it felt as if I’d known him forever. And yet years of rejection stopped me from showing him how much I liked him. The night ended, and we didn’t exchange contact information.
For the last four years I’ve been dating a guy who was a caregiver in college to other students with severe disabilities. It’s a huge relief not to have to explain anything to him about my body and how it works. But he lives in another state and travels professionally. I’ve been thinking about getting back on the Internet to meet people who live within a 30 mile radius for a change, but the last time I tried that, men wrote me things like this: “I want to throw you on a bed, take your wheelchair away and do whatever I want with you.” Creepy.
I Googled disabled women and dating. The articles and blog posts I saw confirmed that younger women with disabilities who came of age in the era of online dating are still having the same problems I’ve had. It’s too hard, with a disability, to connect with a man on the distant Internet. I have found that, in my case, men need to experience me to see past it.
The source of attitudinal barriers is fear. Fear of the unknown. The able bodied fear the possibility of becoming disabled some day and being incapable of coping. Some people actually express that anxiety: “I don’t know how you do it, I would have killed myself by now.”
But all it takes to remove that fear is self-awareness and a conversation with the person who is different. Just normal conversation. It will become quickly apparent how regular the other person is, how much you have in common with him or her, how their hopes, dreams and needs mirror your own. Disability is an equal opportunity condition. Everyone is just one car accident, fall down the stairs, disease, violent crime or shallow dive away from becoming a member of the club.
Even though it’s been a long time since I had a date, I’m still putting myself out there, looking for love. I’m pretty optimistic about my chances because, as I age, my peers are starting to experience physical deficits of their own. They worry a lot about their own bodies and attractiveness and my issues are less foreign to them. They are learning for themselves that they still want and need love no matter what they look like, how old they are or how their bodies fail them. They know that skin is still skin, touch is still powerful, and that a physical union is also an emotional and spiritual bond. The desire for love only dies when we do.