LESSON 4

There Ain’t No Cure for Love

Even in love, people don’t really understand what attracts them to each other.

—YU XIUHUA

Because we are told we are not sexy or lovable it becomes a bigger deal than it is. And we start blaming the world and other people.

—MIK SCARLET

The biggest misconception about disability and sex is that people who are disabled don’t have sexual desires and probably don’t have sexual partners either because they’re not desirable.

—KALEIGH TRACE

What Phil and Wendy Allen Taught Me

THERE IS A wealth of Hollywood-style imagery about sex in our society, yet a poverty of understanding about sexuality, love, and intimacy. People with disabilities can help. They can shine a light in the dark corners of our desire and expand the boundaries of commitment, particularly as we age, become a caregiver to a partner, and experience long-term illness or impotency.

I taught a summer school university course on disabilities for classroom teachers for a number of years. My teaching method was simple: introduce them to as many people with disabilities and their families as possible. The most powerful guests were always Phil and Wendy Allen. I had known them separately before they started courting. Wendy was vivacious and could light up any dance floor. She cohosted a radio show on disability. Phil was older, an authority on John Wayne westerns and Star Trek. He was one of the few people ever to escape from an institution for people with developmental disabilities. He simply walked away from the place, where, in his words, “the only thing they taught you was how to feel forgotten.”¹

From the moment Phil and Wendy walked into the class, you could feel the sympathy factor heightening. Despite making it clear in my introduction that Phil and Wendy were there to talk about love and commitment, the first questions always focused on their experience of disability. Eventually the penny dropped. The tender way in which Phil and Wendy related to each other made it clear that they were still sweethearts after years of marriage. The class realized that it should have stuck to the topic. The rest of the class resembled a session with Dr. Ruth. It never failed. Many were struggling with their own relationship and used the class to seek advice from the Allens on how to recover from a broken heart, how to share household chores, and how to make love last through bumps and misadventures. The teachers became students.

Phil and Wendy were married at a time when few people with developmental disabilities got married. Most weren’t allowed to. Nor were they allowed to have sex, as if that could be prevented. Phil once told me that he had had a girlfriend in the institution, but staff never knew about it because if they were caught, they would each be put in an isolation room. Sex and disability rarely go together in the popular mind-set. Sadly, desire, romance, and reproduction aren’t associated with disability either, which is too bad because people with disabilities, as Phil and Wendy taught my classes, can liberate us from the damaging myths associated with love and sexuality.

The people I’ve chosen for this lesson are incurably romantic. They are also hot and desirable. They think about sex as much as we do—or as little. They likely know every combination of love, lust, and infatuation, and how to extend and reinvent one’s sexuality. They have a lot to teach us about the pleasures and joys associated with the laws of attraction.

My wish is that all our relationships be tender ones. That we always consider the body and the soul. And that we remember that it’s not how we are made, how we look, or how we are changing and aging that is important. It’s how we love, and are loved.

Hot, Wet, and Shaking KALEIGH TRACE

Confidence is sexy.

Kaleigh Trace used to feel guilty about sex. Not any longer. “I like it. I have it and I never once feel bad about it,” she says.² Today she feels guilty about other things, like not doing yoga, not knowing how to cook, and eating yogurt for dinner. She describes herself as a disabled, queer, and feminist sex educator who uses words and dildos.

Trace was nine years old when a car accident damaged her spine. She spent her childhood in a wheelchair. Today she uses a cane and describes herself as ambling around with a serious swagger. It took her a long time to learn that a disability may redefine your body but not your sexuality. The lengthy delay was partly because she missed out on sex ed. It was delivered in gym classes, which she didn’t attend because she had a disability. She also had to “annihilate a lot of weird guilt feelings about sex”³; reject the message that women are supposed to be thin and beautiful receptacles for men; and accept the idea that erotic, pleasurable sex doesn’t necessarily mean putting things in things. As a teenager, she became self-conscious about her disability. It’s easy to love having blond hair and blue eyes, she told a radio interviewer, but harder to love the parts of her body that were different. “I think I more actively love the parts of my body that aren’t normative. I really love my feet, even though they look so different.”⁴ She has made it her personal project to stop being ashamed of herself.

Her memoir, Hot, Wet, and Shaking: How I Learned to Talk About Sex, is about “the things we don’t talk about—the mystery, the expectations, and the bullshit that can go along with sex,” according to her publisher.⁵ During her twenties, she worked in a sex shop, which helped her redefine conceptions of beauty, value, and desirability. “I wish that every single adult knew that they are totally hot and sexy just as they are,” she said in an interview. “So many people of all ages and genders tell me they need to lose weight or have a bigger penis or clearer skin in order to have better sex, and I just want to tell each of them that confidence is what is really sexy.”⁶

There Ain’t No Cure for Love LEONARD COHEN

Love is its own drug.

Leonard Cohen thought he had found a cure for the love he sang about in “Ain’t No Cure for Love.” He thought he had reached some kind of higher plateau where he didn’t need sex—until he realized that it was a side effect of the medication he was taking for his depression. “That stuff crushes your libido,” he said in an interview.⁷ So one day, when he was driving to the airport, he stopped the car and threw the pills out the window. “If I am going to go down, I would rather go down with my eyes wide open,” he said.⁸ Cohen was known as the troubadour of sadness and the godfather of gloom. “I’ve dealt with depression ever since my adolescence,” he said in a New Yorker profile. “Moving into some periods, which were debilitating, when I found it hard to get off the couch, to periods when I was fully operative but the background noise of anguish still prevailed.”⁹

For fifty years he tried just about everything to deal with his depression: booze, drugs, sex, religion. In his late fifties he became a monk and spent six years meditating at a Zen center on Mount Baldy in California. Nothing worked, so he left. In his poem “Leaving Mt. Baldy,” he wrote, “I finally understood / I had no gift / for Spiritual Matters. / ‘Thank You, Beloved’ / I heard a heart cry out.” He sent this note to Roshi, his master: “I’m sorry I cannot help you now, because I met this woman.”¹⁰

In 1999, he went to Mumbai, India, to study with Ramesh Balsekar, a former banker and Indian spiritual guide. Whether it was related or not, his depression lifted. He said the background of anguish that had been with him his whole life began to dissolve. By then, he was in his mid-sixties. “There was just a certain sweetness to daily life that began asserting itself,” he recalled. “Wow, this must be like everybody feels. Life became not easier but simpler.”¹¹ Cohen claimed the cure was simple: he learned to ignore himself. It seems his longing for that other love also returned. The legendary ladies’ man wrote this self-deprecating homage to Indian women: “India is filled with many exceptionally beautiful women who don’t desire me. I verify this every single day as I walk around the city of Bombay. I look into face after face and never once have I been wrong.”¹²

Love at Second Sight MARLENA BLAVIN

A second look can lead to true love.

When bodywork therapist Marlena Blavin first heard the voice of her future husband, David Roche, she was behind a curtain. His voice gave her goose bumps. They were both volunteers, learning how to give massages to terminally ill patients at a medical center in San Francisco. “I was entranced by his voice,” she recalled. “It stirred something in me.”¹³ She fantasized him as her ideal man, with thick curly brown hair, piercing dark eyes, and olive skin. When he stepped from behind the curtain and she saw him, she walked away without saying a word. “I had never seen anyone who looked like David,” she said in an interview.¹⁴ She was referring to the left side of Roche’s face, which is marked by repeated surgeries and radiation burns as doctors dealt with the huge benign tumor that he was born with.

Blavin’s curiosity quickly overcame her shock and embarrassment. “There was something about him that kept me taking another look,” she said. “I kept watching him during the class. I was attracted to his sense of humor, the bold way he spoke,” she said. “David just has this magnetic way about him.”¹⁵ She asked to be his massage partner. It became Blavin’s way of looking beyond Roche’s face and touching his soul. They became friends. Months later, they fell in love.

Their educational video, Love at Second Sight, tells the story of their romance and eventual marriage. It’s a story of perception—of shifting one’s gaze, of following one’s heart, and of discovering and accepting our inner beauty. The video is designed to help young people who are on the verge of puberty deal with the challenges of appearance and acceptability, although the teachers and parents who watch it are just as attentive. In the video, Blavin describes her initial confusion with openness and gentle humor. In the discussions that follow, she and her husband model dealing with the judgments of others and not going along with the crowd. “That first look is not what counts. I needed time to adjust to David’s face and how he looked,” she says. “David needed a second look and a second listen. I needed a second look. We all need a second look.”¹⁶ “We were like two sleeping beauties who woke each other up,” she said in an interview.¹⁷ David agrees. As he said in an interview, “Perhaps true beauty is something that draws our attention at second glance, once the judgment of a first glance has realized its mistake.”¹⁸

Sex and the Gimpy Girl NANCY MAIRS

Intimacy and desire are ageless.

When American writer Nancy Mairs’s husband of thirty-five years became impotent, her mother told her she could live without sex. “I know I can,” Mairs replied. “I just don’t want to.”¹⁹ She and her husband, George, both had infirmities, he from cancer, she from multiple sclerosis. “Desire doesn’t arise down there but up here,” she wrote in her essay “Sex and the Gimpy Girl.” In her book Waist-High in the World, Mairs wrote, “If we demanded enchantment, we’d be sorely let down.”²⁰ She wrote frankly about a life that people might have trouble imagining but might experience one day. For example, they might assume that a sexual relationship cannot be sustained when one partner provides routine care to the other. It’s just not true, she said. Even though her and her husband’s bodies held “few mysteries for each other,” the routine of caregiving didn’t diminish their attraction. “Once you’ve helped your wife change her wet pants, or watched the surgeon pop a colony of E. coli from the healing wound in your husband’s belly, you have seen behind all the veils.”²¹ She explained that her husband’s impotence had a physiological rather than psychological basis and didn’t usually discourage them from lovemaking. In fact, “because we have grown so familiar with each other’s physical realities, we love each other more unabashedly and inventively as time goes on.”²²

Mairs felt that having her husband participate in her care called her into life. “To view your life as blessed does not require you to deny your pain,” she wrote in her book Carnal Acts. “It simply demands a more complicated vision, one in which a condition or event is not either good or bad but is, rather, both good and bad, not sequentially but simultaneously.”²³

Crossing Half of China to Sleep with You YU XIUHUA

Passion is the essential provocateur.

Chinese poet Yu Xiuhua has been compared to Emily Dickinson. Her poems are about love and erotic longing. One of them, “Crossing Half of China to Sleep with You,” has been read by millions of Chinese people and made her the voice of a rising feminist movement in her country. The lines include the following:

To sleep with you or to be slept, what’s the difference if there’s any? Two bodies collide—the force, the flower pushed open by the force, the virtual spring in the flowering—nothing more than this, and this we mistake as life restarting.²⁴

The New York Times selected Yu Xiuhua as one of the most courageous women in the world in 2017. She has a reputation for not backing down from a fight, whether it is against being labeled a peasant poet because she lives and farms in rural China or being labeled a disabled poet because she has cerebral palsy. She recently got into a spat with the elder statesman of Chinese poetry, Guo Lusheng, who didn’t like her description of a perfect afternoon: drinking coffee, reading a book, and making love. He felt she should be writing about the miseries of rural life. Her defiant response was that she never felt life in the countryside was all that miserable and that perhaps his real criticism was that she insists on holding her head high despite “being on the bottom rung of society.”²⁵

Yu Xiuhua was forced into a marriage to a older man when she was nineteen. They have one son, who is now in university. Her parents did the arranging because they feared she would never be able to take care of herself. Their marriage was loveless. She began writing poetry at twenty-seven, saying she needed to do something to keep her spirits up. In her poem “I Am Not Alone” she wrote, “I believe what he has with others is love. It’s only with me that it’s not.”²⁶ Once she became famous, she used her book royalties to buy her husband a separate house. Then she divorced him. She now lives with her father in a newly built two-story house. Still Tomorrow is a documentary about her rise to fame and her refusal to live a life without love. Poetry, says Yu Xiuhua, is her spiritual walking stick when she is stumbling around in life. “Without poetry, life is empty. When I write, I feel poems give me peace and tranquility.”²⁷

Fifty Shades of Scarlet MIK SCARLET

Sex is much more than penetration.

Mik Scarlet woke up one morning when he was a teenager and found he couldn’t walk. His spine had collapsed in his sleep, the side effect of treatments he had received for childhood cancer. He has used a wheelchair ever since. “There was no more standing for me,” he joked to a TV audience. “And there was also no more standing to attention down there.”²⁸ Scarlet was no longer able get an erection. Not the kind of news a teenager wants to hear.

Scarlet became a singer-songwriter influenced by punk and Goth culture. To give you a sense of his flamboyant personality, he named one of his bands Scarlet Messiah. Today he is a UK media personality, the first disabled presenter to work on mainstream national TV, and the first disabled actor to appear in a soap, where he was described as “Wheelie Sexy.” He was recently listed as one of the most trusted journalists in the UK. Scarlet also co-hosts “The Love Lounge,” which offers online advice on sex, love, and disability. “Sex is something we all want and we all have a right to enjoy,” he says.²⁹ He bills himself as a non-expert expert. Scarlet is happily married to Diane Wallace, the former lead singer in one of his bands.

He believes that society needs to move away from a freaky image of disability and sex. One reason is because anyone can become disabled. “When I incurred my spinal injury, I thought my sex life was over,” he said, “but nothing could beat the sex I have now.”³⁰ With the help of a group of lesbian friends, he learned how to make love to a woman, like a woman. They even made him an honorary lesbian. “I know that sex is so much more than penetration,” he said in an interview. “You can make somewhere else your erogenous zone, for instance, if you don’t have sensation in your genitals anymore.”³¹ Scarlet writes and produces videos introducing people to the expanded world of sexuality that he discovered. He advises people to think themselves to orgasm and offers advice on finding orgasmic zones on their body—for example, inside the mouth or on the shoulder. “There is so much ignorance,” says his wife, Diane. “People assumed our sex life was over because Mik was disabled. But there was a raw sexuality about Mik; he was so easy and confident.”³²

Things Disabled People Know about Parenting ING WONG-WARD

The natural act of parenting shouldn’t have to be a radical act.

Award-winning broadcaster Ing Wong-Ward decided to become a journalist at the age of thirteen after a friend won an award for being her “savior.” The friend had been profiled by a local reporter. Upon seeing how she was portrayed, Wong-Ward decided she could write a better story about disability in general.

Wong-Ward, who died while this book was in production, was born with spinal muscular atrophy, a neuromuscular condition. She always used a wheelchair and needed personal support care to live her life. As a result, she grew up used to people’s stares. She thought she had learned to live with them. However, she was unprepared for the frozen look she received from a drugstore cashier when she wheeled up to the counter to pay for a pregnancy test. At that point, she knew she was in for a variety of judgments that most pregnant women don’t face.

While many of her medical practitioners offered support, there were some who assumed she would be a less than competent parent. A head nurse in the neonatal department where she delivered her baby wrote a detailed note about Wong-Ward’s disability, adding nothing about her day-to-day life. Knowing that so many disabled parents face additional scrutiny after having their babies, Wong-Ward wrote a detailed letter outlining the supports that she and her husband, Tim, had in place. Their daughter, Zhenmei, has since grown into an active preteen who was once wheeled around town on the back of her mom’s wheelchair.

Wong-Ward was married to her university sweetheart, Tim Wong-Ward, for more than twenty years. During this time, she faced invasive questions about her family life. In response, she tweeted this reply to #ThingsDisabledPeopleKnow: “Yes. The baby is mine. Yes. She is my bio child. No. I did not use a surrogate. No. I did not need invitro. No. I did not consider aborting her when I found out I was pregnant. No. I would not have aborted her if I had found out she had a disability.”³³

Wong-Ward believed that giving birth to her daughter was probably the most radical thing she had ever done. “I recognize that by having her and being her mother in public, I’m making a major statement about a whole bunch of things: about being a disabled woman, about sexuality, about reproduction,” she said in an interview.³⁴

Wong-Ward went on leave from the Center for Independent Living in Toronto after being diagnosed with inoperable cancer. She received palliative care to manage a variety of symptoms. She and her husband were frank with their daughter, explaining that while Mom was going to die, the family would remain strong. They expected they would have lots of time to be together and create memories.³⁵ Sadly, in the summer of 2019, Ing Wong-Ward passed away peacefully from complications of colon cancer with her husband by her side. Her daughter was able to give her mom a final kiss

In Sickness and in Health BEN MATTLIN

Shared intimacy means fewer pretenses.

When writer Ben Mattlin was a college student, he was kissed like he had never been kissed before. Unlike most male college students, he hadn’t taken the initiative. He couldn’t scratch his nose, let alone walk. He had to ask his girlfriend, Mary Lou, to kiss him. Sparks flew. “You weren’t aggressive, but you had a hunger that was sexy,” his wife recalled. “And yet I knew I was safe with you. It was only going to go as far and as fast as I wanted, which was something I needed at the time.”³⁶ They’ve been together for more than thirty years and have two children.

Mattlin describes himself as an opinionated 120-pound New York Jew who prefers to talk. He uses a motorized wheelchair and is unable to pick up a pencil or feed himself because he has a neuromuscular condition called spinal muscular atrophy. His wife is a California Protestant who reflects before talking and prefers to act. She wanted a house with a backyard. He was a city boy. Disability seemed the least of their differences. Yet the fact that he has disability and his wife doesn’t still seems odd to other people. Mattlin wrote his latest book, In Sickness and in Health, to explore the reasons why society finds romance between a person with a disability and a person without one so strange, yet accepts interfaith, interracial, and same-gender couples. That’s why he coined the word interabled.

Strangers assume that his wife must be his nurse, sister, mother. That he’s a burden and she must be a saint. That he’s lucky to have her. “I simply fell in love with a guy who happened to be in a wheelchair. Nothing noble or self-sacrificing about it,” Mattlin quoted Mary Lou in an interview.³⁷ He believes the emotional, financial, and physical challenges that interabled couples face are similar to what other couples eventually face as they age. “There’s a shared intimacy that many interabled couples enjoy that I think other couples really would envy if they understood it,” he said in an interview. “You know the other person’s vulnerabilities early on. And once you learn to not be afraid of that and trust each other, you can actually emerge a stronger couple than you might have without that.”³⁸ Especially if your wife gets the house with the backyard!

Did You Know . . .

The website Sexuality and Disability (https://sexualityanddisability.org/) updated the Kama Sutra to include twenty-four sexual positions for people who have physical disabilities and limitations.

Did You Know . . .

The hashtag #DisabledPeopleAreHot is used by people with disabilities to proclaim their sexiness. The hashtag’s creator, Andrew Gurza, who hosts the podcast Disability After Dark, wants disabled people to celebrate being sexual and sensual and nondisabled people to move past their biases and preconceptions.