It started with an ad in the personals column of a St. Louis weekly in December 1986. “Jewish men over 40 are wonderful, ” declared advertising copywriter Erica Klein, and she invited anyone meeting her qualifications to contact a “loyal, loving 30-year-old who’s looking for a close, mutually supportive relationship leading to marriage.” Ken Kroll, then 43 and an ad copywriter himself, thought he fit the bill. His letter, one of the 25 Klein received, caught her eye. “He was able to put his soul on paper,” she says. “The words practically danced off the page.” But Ken also wrote that he was disabled. Since the age of 12, he has suffered from a rare neuromuscular condition called dystonia musculorum deformans that affects his speech, contorts his face and forces him to use a wheelchair for all but the shortest distances.
Moved by his prose and his honesty, Erica called, and they chatted for an hour. But she grew more and more uncomfortable during the conversation. Kroll’s speech was slurred and hard to understand. “I was uptight about what people might think if I went out with a disabled man,” she says. “I worried that people would think I was desperate.” Still, she agreed to meet Ken, who had been divorced twice—each time from a disabled woman—and had two adopted children. Despite Erica’s initial misgivings, they fell in love, and on April 17 they were wed in the Japanese Garden of Clear Harmony and Peace at the Missouri Botanical Garden in St. Louis.
All couples have problems, but theirs were obvious from the beginning. As a result, they used their 16-month courtship not only to get to know each other but also to talk out the possible consequences of their relationship. (They don’t plan to have children.) Ken and Erica sought premarital counseling, which
they will continue for another year. “Erica has learned more about my limitations, and I’ve learned not to try to keep up with her physically,” says Ken. The couple recently spoke with correspondent Barbara Kleban Mills about the prejudices and fears—their own and society’s—which they are working to overcome.
Erica: People have said to me, “Are you sure you know what you’re getting into?” And I say, “Yes, we’ve talked about it over and over.” Yet intelligent people can’t help voicing their misgivings, saying “He’s always going to hold you back, Erica. He’s always going to be someone you’ll have to drag along behind you.” Two months after I met Ken, a close relative called in the middle of the night and asked, “What if he turns into a vegetable?” I said, “Don’t worry. I’ll throw some butter and garlic on him and sauté him!”
Ken: Our first date was breakfast at a hotel, and at the beginning my disability loomed large. She readily noticed how others talked over me to her in their unconscious attempts not to have direct contact with me.
Erica: I noticed immediately that he had this limp, this strange gait. Besides his walk, which attracted a lot of stares, the waiters had a hard time understanding him. I was self-conscious; I felt everyone looking at us. I remember thinking that if we ever got together permanently, I’d be settling for damaged goods.
Ken: Well, the limp is there. But I don’t notice it.
Erica: And that just won me over. He’s unflappable, honest and completely confident. But I was always uncomfortable when people found my partner or date lacking in some way, as if it somehow reflected on me.
Ken: It doesn’t.
Erica: I know it doesn’t, but I didn’t always feel that way. As I was growing up, there was a clear message that one should not get together with anyone who had disabilities because that person would compromise the happiness of the marriage by being a burden. So I launched Ken into my family very cautiously. I called my father after our first date and told him I had met someone really terrific, but that he had a disability. I told him that Ken sounded like the Elephant Man when he talked and that people often drew away from him, whispered about him or stared at him. My father said, “Well, give the relationship time and see how it goes.” My mother was quite concerned. Later, both of my parents became worried that he wouldn’t be able to support me. My mother is still uncomfortable with Ken’s speech pattern, especially when his face scrunches up.
Ken: It doesn’t hurt.
Erica: But it always looks as if his face is contorted with pain, and that’s been a tough thing for me to get used to. Ken’s been wonderful about making it easy for me to voice my discomforts. One reason I was always uncomfortable with handicapped people was that I felt they desperately wanted to make contact with able-bodied people, and I was afraid that if I did become friendly with one, they’d want more than I could give. Ken is completely understanding and aboveboard about his disability, and I think that’s why we made it.
Ken: After all these years, the way I am doesn’t bother me. I’m a practical person. I know my condition is not curable—no matter what I do. So I’ve accepted it and tried to continue with my life by ignoring it if I can. One of the only apprehensions I had was how Erica would have problems with the way I accept my handicap. She had a tough time adjusting. She could accept me as I was, but it troubled her.
Erica: It took at least two months before I was really comfortable with his speech. I would finish sentences for him or jump in before he had a chance to get anything out. Now I’m aware that it takes him longer to answer. We’ve tried to work out a more courteous situation where I won’t step on his words just because I speak quicker.
Ken: She also had to adjust to my physical limitations. We had known each other just a few months when we decided to go to dinner at a small bistro down the street. I wanted to take my wheelchair, but Erica said, “You can make it walking; it’s only a block away.” That block turned out to be two, pushing my endurance to the limit. We arrived with me huffing and puffing and sweaty. So by trial and error, Erica has learned to see through my eyes when we are out.
Erica: A big problem is when there is a third party involved and Ken starts talking. People see his face distort and how he labors to get out a few words, and they usually react by freezing. It’s a mixture of curiosity, shock and discomfort. I feel very deeply for the comfort level of the other person, and I always try to slip in a little explanation, something like, “As you may have noticed, Ken has a speech disability; he had four experimental operations on his brain when he was a kid. The last one caused permanent damage that affected his speech.” I don’t belabor it, but even saying that much grates on Ken’s nerves. He feels that people should just wing it, and we have conflicts about that.
Ken: This latent prejudice, fear of the unknown and lack of understanding of the capabilities of the disabled make being disabled more difficult than it would be otherwise. In restaurants, for example, the waiter or waitress will invariably ask Erica for my order, apparently believing that because I have a speech disability, I am incapable of ordering for myself. Strangely enough, if I’m out alone, these same people treat me as if I’m normal. But Erica’s presence gives them a way not to have to deal with me directly.
Erica: One of the things Ken has really helped me see is that disabled people are fully capable of being romantic or marital partners. I looked at the wheelchair, and I just assumed he couldn’t be a virgin since he was married twice before. But I couldn’t believe that other women he had dated wouldn’t have been turned off. I had to be reassured that his disability didn’t mean that he was sexually dysfunctional, so I asked. I didn’t come right out and say, “Are you good in bed?” but…
Ken: She said, “How’s your sex life?” and I said, “There are no problems.” Unlike other women I had dated, she came right out and asked the important questions.
Erica: Where there is a problem for us is finances. Even though Ken is a top-notch copywriter with a good portfolio and more than 20 years of experience, he’s found it very difficult to find steady employment. They’d tell him, “We couldn’t have you in this job because you might make the clients uncomfortable.”
Ken: They’re rarely that direct. They’ll say you want too much money or something. Employers look at a handicapped person and say, “That person can’t possibly do the job” or “That person ought to be at home.” They’re not trying to be malicious. It’s just the way they feel.
Erica: I’ve never felt a man had to make more than a woman, but I’d always hoped we’d make about the same. Right now I earn about $30,000 more a year than he does. It’s still a problem for us because I know Ken would like to be a full economic partner and he’s been prevented from being one. Potential employers see a disabled person and think, “Insurance problems and high medical costs.” There are antidiscrimination laws, of course, but…
Ken: They don’t work.
Erica: I know a lot of people had, and probably still have, doubts about us. But one of the great lessons I have learned in the time that we have been together is that you may not be able to change your first reaction to a disability, but that if you give the person a chance—if you get to know him even superficially—the discomfort melts away and you are able to see him without those blinders. Ken has educated me to tune out caring about what people think. He’s made me see that you’re proud of the person you’re with, and you love them and they love you, and the hell with anyone who doesn’t accept it.
Ken: When I met Erica, it was like finding a shining light in a dark forest. I didn’t deliberately seek out an able-bodied woman after two failed marriages to disabled ones. What I was looking for was a woman who truly cared for me, and cared more about our relationship than about herself, yet was still personally independent. Erica is Erica, and together we’re a great pair. That’s all that matters.