Before her amputations at age 21, Bonnie Jones flaunted her sexuality. “Afterward,” she says, “if somebody knocked on the door — even the UPS guy — I wouldn’t answer.”
Today, Jones, 40, enjoys a healthy intimate relationship with her partner, Richard Haubner, with whom she shares a home in Southern California. But the journey, she says, was far from short and far from easy. “At first, I was judging myself so harshly that I saw a person who had nothing to offer,” she says. “Eventually, I realized that I still had the person I was inside, but I was pushing her down.”
Jones’ experience reflects that of many women who struggle to build close relationships after a disability. Some obstacles are givens: feelings of loss and shame, awkward new beginnings and, usually, at least one bad match. But the road to intimacy doesn’t have to stop there. Hold out, say the women who’ve gone further, for good sex and true romance.
Picking Up the Pieces
For many women, it’s the image in the mirror that deters them from rewarding relationships.
“It was always very hard — and it still is — to believe that someone could love my body the way it is,” says Lisa Golem, 36, a C4-5 quad from Verona, N.J.
Golem, injured at 14, says she wouldn’t even risk rejection until she was 27, when she went on her first date. During the intervening years, she protected herself from male attention with 120 extra pounds. “Being heavy, I didn’t have to deal with the issues of sexuality,” she says.
During graduate school, Golem encountered people who were open about sexuality. When she felt ready to let someone get close to her, the extra weight fell off in nine months. “Something inside me had changed, so I felt like presenting myself as open and willing to date. For some reason, that seemed to attract people.”
Other women describe similar turning points. Bonnie Julian, 47, L1, was devastated by her first husband’s reaction to her injury. “He just couldn’t find my body attractive. He couldn’t get turned on by me,” she says.
Julian, from Littleton, Colo., became depressed and was ashamed to be seen in public. “I didn’t want to go anywhere. My oldest daughter was 11, and when we’d drive to the store, I’d ask her to go in and get things for me. She was one of my saviors, though. She said, ‘No, Mom. We’re both going in, or no one’s going in.'”
After she started leaving the house more, Julian met her current husband, Art, and realized that a man could still find her attractive. “The first time I was naked in front of him, he said, ‘Oh my god, you’re gorgeous.’ And he had such a look of absolute joy that I actually believed him.”
Some women never do come to believe in their attractiveness, and say they depend on lovers to boost their sexual confidence. “I’ve gotten increasingly discouraged about it because I am older and fatter, and I have scar tissue from numerous surgeries for decubitus ulcers,” says Rene, 40, C4-5, from Portland, Ore. “I never really feel good about my body until there’s somebody there making me feel good about it.”
Jones learned the pitfalls of relying on external validation during a doomed marriage. She settled for less, she says, out of fear of rejection. “But when I had my daughter, I wanted to present to her someone with strength of character, so I had to re-evaluate everything: Was it the number of limbs I had that was attractive? I used to think that,” she says, “but when I realized I’d lost touch with my spirit through all of this, I wanted it back.”
Seeds of Trust
Jones left her marriage and began nurturing her inner self, but it was a long time before she felt secure enough to present her disability openly. “It’s really hard as an amputee because I’m one person with my prosthesis on and another with it off. At some point, you have to take your prosthesis off. My walls are down now, but it took years before I could be open and not be afraid.”
Her trick? “I try to approach it in a playful way. Then the comfort zone is there and the person says, ‘Wow — that wasn’t so heavy.'”
Before she learned such finesse, Jones says she freaked out a few people. “I was so serious,” she says. She recalls saying one time, rather dramatically, “There’s something I really think you should know.” Her date looked uncomfortable and leaned closer to her. “I’m wearing two artificial legs,” Jones whispered. The man burst out laughing and said, “Wow, I’m really relieved. I already knew that. I thought you were going to say you were a transvestite!”
Learning to take yourself less seriously may help, but women with spinal cord injuries say it’s hard to find humor in the prospect of a bowel or bladder accident.
Juli, 34, T2-3, wasn’t amused. “I was told in rehab that sex could cause me to lose bowel or bladder control, and that weighed heavily on my mind,” she says. But she eventually learned that her lovers weren’t as squeamish as she expected, and that her real issue was trust.
“You have to understand that my spinal cord injury wasn’t an accident,” Juli says. “My ex-husband shot me. When I got out of rehab, I didn’t want anything to do with men.” But when she met one who was open and accepting, Juli was able to bare all. “He really had no expectations, and there was no pressure. I found I had been putting the pressure on myself.”
Accidents happen, she says. So does trust.
If you’ve learned to believe in your own worth, you may find yourself in the company of highly evolved lovers. But if you’re insecure or new at disability, you might find yourself with a creep.
Several women in this story found love through the personal ads, but Jones says you have to be careful what you ask for. Disclosing her amputations, she says, drew the ardor of fetishists.
One man Jones dated for a year was enthusiastic in private, but was ashamed to take the relationship public. “He was a very interesting person, but he just couldn’t come out of the closet with
Rene, a lesbian, has had three consensual affairs with attendants, but knows the darker side of personal assistance. When she was 19, she was ill and bedridden with a pressure sore. “I had only one woman taking care of me, and I was so scared of her leaving. So I basically let her sleep with me every night. It was close to rape,” she says.
“Now,” Rene says, “I’m really careful when an attendant initiates sex. I make sure it’s not at a time when I’m feeling sick or vulnerable.”
Carol Gill, 48, a polio survivor from Chicago, experienced another brand of bad partner: “the nondisabled man who feels strong and powerful because he’s got this woman to take care of. It’s not exactly perverted,” she says, ” but it’s not healthy, either.”
Golem kept her virginity until she was 27, but lost no time after that. “At one point, I was told that I was like a kid in a candy store,” she says. “It was very exciting. I was very scared.”
But her “adolescence” was short-lived, because she wanted an emotionally healthy relationship. After a few meaningless affairs, she put an ad in the Dallas personals.
“I said I was 6 feet tall with brown hair and a wheelchair. I got about 35 calls and 30 letters. It was a lot of fun. I met a lot of people, a lot of weirdos, and then I met my husband.”
She knew she was on the right track when she realized her disability carried no emotional baggage for him. “It never really seemed to make a difference. Sure, it causes problems,” Golem says, “but those problems are physical, and physical things can be dealt with.”
Julian had similar good fortune in her first sexual encounter after her injury. “It was the most wonderful sexual experience of my life,” she says. “It was never so free and easy with my ex-husband, even though I was ablebodied then.”
“Until that night, I thought that part of my life was over. Afterward, I realized that I was still a woman and attractive and could satisfy a man and be satisfied.”
The Big O
So how is it? Really.
“It’s different,” says Julian. “It’s like my body is reacting the same as it used to, but I don’t have the surface feelings. It’s very intense to me, but it’s like warm, wonderful rushing in my entire body. But it’s all happening inside, rushing to my brain and without the external feelings.”
Julian is one of the lucky ones — only half of women with SCI are orgasmic. Researchers still aren’t sure what physical factors — if any — contribute, but a few women who experience orgasm offer these observations: “I don’t have any skin sensation — all of my sensation is inside,” says Juli. “Sex has to be slow. He has to be at the right angle. I use my fingers to stimulate my clitoris, which also helps. Definitely don’t be afraid to touch yourself.” “Lots of foreplay is important,” says Golem, who also uses fantasy to reach orgasm. “Whatever makes you feel good is important.” She adds that her sex life improved when she switched to a suprapubic catheter. “I used to have it in my urethra, which was not as sexually pleasing,” she says.
Teri Michaud Carlson, 38, C5-6, says she gets dysreflexia from direct clitoral stimulation, so deeper pressure works best. “I was the same before my injury,” she notes. “I would orgasm only with intercourse, not oral sex.”
Rene says physical sensation comes to her primarily through acting out fantasy scenes with sex paraphernalia. “Other lesbians often assume that I want tender, caring sex due to my limitations,” she says. “Actually, I prefer something not so tame. Fantasy scenes are especially nice because they require one of my greatest sexual attributes — imagination.”
Jody Barker, 25, a T12 para from Los Angeles, says that self-directed concentration helps her achieve orgasm. “You’re mentally imagining what you can’t feel, so if you can’t concentrate, you won’t have one. We’re always worried about what the man’s thinking. We need to be more selfish.”
Having it All
Can you have it all — the security, the love, the pleasure of intimacy? “You don’t have to settle for anything less,” says Golem, who has been married for five years. “There are men out there who can deal with the physical and emotional issues that go with disability.”
They’re out there, agrees Jones, but you’ll never find one unless you believe you deserve it. “It was an accepting of myself to let someone really care for me–to feel like I was worth being cared about,” she says.
For Jones, that self-acceptance was hard to win. “You have to develop yourself in other areas of life that make you an interesting person — not just a disabled person, she says. “In the beginning, you’re so busy licking your wounds that you can’t see that life can still happen for you. I wish someone had told me that, and I wouldn’t have wasted so many years worrying so much.”
Could she have heard it then?
“That’s a really good question. Maybe I heard it when I could.”