stories

‘I’m afraid I’ll be judged for these feelings’ Disabled people want sex lives and they’re talking about it, but no one in Russia is listening

Meduza
Sergey Basalaev
Sergey Basalaev
Anna Ivantsova for Meduza

Fifteen years ago, Sergey Basalaev saw the movie “Basic Instinct,” and consciously experienced sexual desire for the first time in his life. He was 20 years old at the time. Watching the scene where Michael Douglas and Sharon Stone dance in a night club, he suddenly realized that something “wrong” was happening to him. “I turned red and my heart started pounding like a steam hammer,” Sergey remembers.

My conversation with Basalaev takes seven hours. Now 35, Sergey is confined to a wheelchair. He has no voice, and speaks using a special contraption strapped to his head: a crown of welding helmet parts with a rubber-tipped rod affixed to the forehead. Attached to his wheelchair is a stand for a keyboard, a few feet from which sits a large monitor running Microsoft Word.

I ask Sergey my questions aloud, and he uses this device to type out his answers on the keyboard. His family calls the contraption his “trunk.” Sergey’s father created it for him when he was 12. Before the trunk, his parents were virtually unable to communicate with their son.

“The dumbest thing I’ve heard”

“I thought I started speaking when I was three or four,” Basalaev says. Thirty-five years old today, he was born and raised in Murmansk, but a few years ago he and his family moved to Kaliningrad. “My parents talked to me all the time, and I thought I was answering them. But then I started to sense that nobody was hearing me. I couldn’t understand why. Then I realized I can’t speak, and it was an immense shock.” Sergey says this was the moment when he first experienced the despair and fear of feeling trapped in his own body.

Sergey suffers from severe athetoid cerebral palsy, complicated by spasticity (where his muscles are constantly tense, causing a combination of paralysis and exaggerated deep tendon reflex that prevents him from moving, speaking, and controlling his own limbs). His mother, Olga, says he was born with severe oxygen deficiency. Sergey spent the first 50 minutes of his life out of the womb being resuscitated by doctors, who promptly informed his mother that he likely wouldn’t live to see the evening. When Olga and her son were finally discharged from the maternity ward, she knew that he had cerebral palsy, but she still didn’t understand what effect the condition would have on his physical and cognitive abilities.

Sergey can feel his own body, but he exerts almost no control over it. Because his brain is constantly sending involuntary signals to his muscles, his arms and legs twitch without warning. He often drools, and each time he has to wait for his parents to wipe his mouth dry. Sergey cannot control the muscles in his face, and he eats only twice a day, always lying down, because it’s harder for him to get his jaws open while sitting upright.

By the age of 14, Sergey’s mother says, he’d completed an eighth-grade education. He wasn’t admitted to a regular school, but he was allowed to attend classes at a center for hearing-impaired students. Sergey didn’t stay there long, however, and soon switched to homeschooling. He owes all four of his friends to Internet forums devoted to people with disabilities. They have never met in person.

Anna Ivantsova for Meduza
Anna Ivantsova for Meduza
Anna Ivantsova for Meduza

Basalaev says he “unfortunately” started experiencing new desires when he hit adolescence. “Probably because my social circle was so limited, the first person I fell in love with was my 25-year-old language teacher, who would come to us,” Sergey remembers. He says he liked the young woman because she was “smart and cheerful,” which he says are the “most important qualities in a woman” for him. He was too shy to confess his affection openly, so he expressed himself through jokes and the careful completion of every homework assignment. “She was genuinely happy with my progress, and I felt I’d expressed my love correctly,” Sergey says.

When Basalaev was 20, a second woman stole his heart: the 40-something-year-old mother of one of his classmates. “She was this very glamorous woman. Very colorful and beautiful. One day, I worked up the courage and thought, hey the world won’t end if I tell her how I feel, and so I finally said, ‘Dasha, I love you,’” recalls Sergey. “She just smiled and kissed my forehead.”

“The healthy are convinced that people need less sex, the sicker they are. That’s wrong — it’s the dumbest thing I’ve heard,” says Basalaev, explaining that the severely disabled are “frustrated more than anyone by a lack of sex.” He can’t move his own fingers, but Sergey’s genitals work just fine. And the problem isn’t limited to finding a willing sexual partner: people in this state can’t even relieve sexual tension by masturbating. Sergey says he sometimes watches erotic films and experiences arousal, “but it goes nowhere.”

Basalaev says he spent many years trying to fight his sexual urges by turning to spiritual literature, but it didn’t work. He says the only thing that might be worse than constant, unsatisfied desires is hearing healthy people say that sex isn’t all that important to the disabled. “I’m afraid I’ll be judged for these feelings, for example, by religious people,” Sergey says. “Maybe they think I shouldn’t be dreaming about this kind of thing?”

Sergey says he’s never fought with his parents about this, but he says he knows from fellow disabled people that conflicts inside families are the norm: “Parents beat their kids, after catching them watching porn. They do it out of confusion and powerlessness, not anger.”

Sergey’s mother says she understands that her son has sexual urges. “Of course he wants it. When Sergey initiates and talks to me about this, we have a conversation. But I don’t know how to help him,” Olga explains. “My husband has taken a different position: he’s convinced that there’s nothing wrong with this and Sergey will be fine, because monks live without carnal pleasures. I’ve been trying to tell him that monks at least choose this life for themselves. Our Seryoga didn’t choose this.”

Olga Basalaeva says her son recently met a girl on the Internet. They corresponded for some time, and later she says: “Transfer money to me to fix my laptop, or it’s going to break and I won’t be able to keep talking to you.” “Then she asked him for money a few more times, and we sent it. Seryoga believed her, and I didn’t want to upset him,” Olga remembers. “One day, I go into his room, and he looks up at me with these eyes, like a beaten dog. It had happened again, and he’d realized of course that it was all a scam.”

Sergey says he’s certain that most women don’t consider a completely paralyzed person to be a man. He confesses that he would now like to have sex with a woman, even if it wasn’t for love. He says he’s thought on several occasions about paying a sex worker, but his parents have been categorically opposed. “I don’t want to upset my parents,” Basalaev says. “And whenever I think about it, my head is immediately flooded with fears: what if the woman takes one look at me and decides she doesn’t want the job? Or what if she’s got criminal ties, and it turns out that I brought a thief into our home?

Anna Ivantsova for Meduza

“Nature does its job”

Seventy-four-year-old Cheryl Cohen Greene works as a “surrogate partner therapist.” For the past 44 years, she’s helped disabled people with their sex lives. Cohen Greene’s career served as the basis for the 2012 film “The Sessions,” starring Helen Hunt.

Cohen Greene told Meduza that she sometimes climaxes during sessions with clients. She scoffs at people who wonder how she could be intimate with disabled people, insisting that her clients need only a few basic instructions before “nature does its job.”

Cohen Greene studied surrogate partner therapy in the 1970s, following research by the sexologists William Masters and Virginia Johnson. She says being a surrogate partner doesn’t require any special skills, explaining that it's “more a calling than a profession.” The main thing she says she learned in training was to be as attentive as possible of the client’s particular sexual needs.

A surrogate partner based in San Francisco, Mark Shattock told Meduza that people training in this field get a two-week crash course run by psychotherapists and sexologists. Trainees also attend experienced professionals’ therapy sessions, before branching out independently. Shattock has been a surrogate partner for roughly a decade now, and he works with men, women, and transgender clients.

In the United States, Great Britain, France, Germany, and Australia, there are surrogate partner groups, including the U.S.-based International Professional Surrogates Association. To get help, clients contact a psychotherapist from the association, who refers them to a surrogate partner, if necessary. Cohen Greene says surrogate partners typically receive about $300 for a single session, though discounts are often available to clients with financial difficulties.

To keep clients from forming emotional attachments, surrogate partners limit the number of sessions they can have to between six and nine. Cohen Greene says the surrogate partner’s job in a session is to disabuse the disabled person of all preconceptions that they aren’t sexual and cannot pleasure a partner; to find their erogenous zones; to teach them to pleasure themselves however possible; and to talk about their own body. She says many disabled people get sexual pleasure from someone touching their ears, neck, or stomach — not necessarily their genitals. Clients are supposed to learn all this, which helps them later when searching for romantic relationships. After clients have finished this therapy and discovered themselves, they are not permitted to seek additional sessions.

During each session, the surrogate partner and client are completely naked, but most of the meeting is always devoted to conversation, Cohen Greene explains. The therapist discusses every movement and touch with the client in advance, carefully studying the client’s sensitivity. Intercourse often happens in the later sessions, and very infrequently only in the last. After each meeting, the surrogate partner shares their observations with a psychotherapist, who works in parallel with the client, and together they plan the future course of the therapy. In some cases, after the therapy is complete, the client can still call her and ask follow-up questions, and additional sessions are possible.

Cheryl Cohen Greene says many of her clients recoil at the sight of their own genitals, when she holds a mirror up to their bodies. Some of these people have been bedridden for decades, she says, and they’ve grown convinced that their privates are somehow disfigured, leading them to reject their own sexuality. Cohen Greene says it’s vital for disabled people to feel that they are useful, and it’s her job to find their sensitive spots and show how they might pleasure potential sexual partners. She tells all clients that she’s only there to explore their bodies with them, to prepare them for future relationships or to teach them to pleasure themselves.

Throughout her career, Cohen Greene says she’s had roughly 900 clients. Despite the fact that there are now people in her field working in many countries, she admits that she’s still regularly asked: “What’s the difference between a surrogate partner and a prostitute?” She likes the answer one of her colleagues once offered: Going to a prostitute is like eating at a restaurant, while working with a surrogate partner is like signing up for a culinary class.”

Anna Ivantsova for Meduza
Anna Ivantsova for Meduza
Anna Ivantsova for Meduza

Cohen Greene says prostitutes seek repeat customers, while surrogate partners want their clients to lead independent sex lives. She says people in her field regularly succeed, as well: after sessions with surrogate partners, many disabled clients manage to purge their minds of “unfounded fears,” gaining confidence as sexual beings capable of pleasuring their partners.

Mark Shattok told Meduza that women turn to surrogate partners far less often than men, arguing that women are more likely to be influenced by their families and frightened that relatives will consider them lewd or sex-crazed. Cohen Greene says disabled women come to her mainly wanting help with overcoming their fears. These sessions have not involved sexual contact: the women simply undress and study their genitals together. She says her goal is to convey that everyone is different, but everyone can still be sexual.

“They’re not sure disabled people have such needs”

Sex education specialist Yulia Yarmolenko teaches Russian and Ukrainian sexual literacy trainers how to work with disabled people. She started taking a serious interest in the sexuality of people with developmental issues seven years ago, when she learned that her daughter has autism spectrum disorder. Speaking to the parents of other children with mental and physical disabilities, Yarmolenko discovered that “virtually no one knows anything” about the sex lives of these people, and their loved ones “are afraid to discuss it, and don’t know how, even though they realize it’s an issue.”

Yarmolenko spent four years studying the psychosexual development of people generally and the disabled specifically. “Of course, I was scared to broach this subject,” she recalls. “It was unclear how I was even supposed to look for this information in our countries, and it was even harder to start talking about it in places where it’s considered inappropriate.” Today, Yarmolenko gives lectures on the sexual education of disabled children to different specialists, including correctional teachers, psychologists, and speech therapists.

She says there’s no support system whatsoever for disabled people’s sexual needs in Russia, where just a single researcher is studying the issue with any seriousness. In Ukraine, there are a few more, she says.

Yarmolenko works as a surrogate partner herself — usually with disabled women, who she says are more inclined to talk about their problems and better equipped to satisfy their own urges. “It all differs individually, but women nevertheless have more ways to satisfy their own sexual needs,” Yarmolenko explains. “For example, women can have myotonic orgasms, which are achieved by flexing the muscles in the hips, pelvis, or abs. Some women can climax just by squeezing a blanket or pillow between their legs.”

According to Yarmolenko, legal options available to people in Sergey Basalaev’s situation “are simply nonexistent” in Russia. If relatives and caretakers are ready to acknowledge and address disabled people’s sexuality, the only recourse is prostitution, which does not tackle overarching issues of self-respect and self-understanding. Real sexual and emotional progress would be possible through treatment by surrogate partners, Yarmolenko says, but many people in Russia still deny that disabled people are even capable of having sex lives.

Spokespeople for “Perspektiva,” a Russian nonprofit devoted to “equal rights and an improved quality of life for people with disabilities,” refused to tell Meduza if they receive questions from disabled people about sex, or say whether the foundation would offer help to anyone under these circumstances. Svetlana Fufaeva, the public relations head for the All-Russian Society for Disabled Persons, said she would need several days to answer these same questions. She later told Meduza over the phone, “Management doesn’t have an answer to these questions,” and said the organization doesn’t record statistics about such inquiries. The group’s leaders, she added, “aren’t sure disabled people have such needs.” In any event, Fufaeva argued, “the best solution” for disabled people would be to take out a personal ad in Nadezhda (“Hope”), a newspaper for the disabled.

Olga Gvozdkova has worked as Nadezhda’s layout editor for the past 13 years. She says the newspaper publishes personal ads for free, but these letters have been fewer and further between in recent years. Throughout her tenure, she can recall only one time when one of these personal ads actually led to something. “It was this 40-year-old man from Krasnodar, I think with cerebral palsy,” Gvozdkova told Meduza. “He wrote an email to our newsroom, saying that he was tired of being alone and wanted to find a partner. A few months later, some woman his age, I think also with cerebral palsy, wrote back to him.” The two finally got married last year, Gvozdkova says, and they sent a letter thanking the newspaper for playing matchmaker.

Anna Ivantsova for Meduza

“You’ll laugh, but I’m perfectly serious”

In the fall of 2018, Sergey Basalaev wrote an essay, titled “Sex, Pain, and a Living Prison,” where he talked about suffering from the fact that society and even his own parents refuse to acknowledge or accept the fact that disabled people need both love and sex. Basalaev also proposed steps that he says would help improve the lives of severely disabled people in Russia: “Naturally, I’m not talking about creating an intimate assistance organization for severely disabled people across the whole country. A project like that would be too big. Dear reader, you’ll laugh, but I’m perfectly serious: we need to create websites where volunteers can agree to provide intimate services to disabled persons.”

Throughout his conversation with Meduza, Sergey repeated several times that he’s both eager and scared to talk openly about the disabled community’s sexual needs. He says he’s aware of cases where disabled people have come forward in Internet forums about their own problems with satisfying their sexual urges, only to be “bullied.”

Sergey says he has a friend named Konstantin who once wrote in a forum on the health and beauty website Nedug.ru and on his Vkontakte page that he wanted normal sexual relations with a woman. He mentioned that he was 25, and said he has to pay money for “contact with a woman.” “I’m not the only one who wants sex. Most disabled people want it, but they stay silent, probably crying into their pillows at night from loneliness. And their parents are no help. Why does nobody in fucking Russia think about the intimate side of disabled people’s lives? [...] Tell me, does this bother you? Well, I’m not ashamed of my desires, and I’m not hiding in a corner and saying that I don’t need ‘it,’” Konstantin wrote.

According to Basalaev, his friend was “bullied so badly on social media that he had to delete his accounts everywhere.” Most of the Internet users who tormented and condemned Konstantin were not disabled people.

Story by Irina Kravtsova, reporting from Kaliningrad. Translation by Kevin Rothrock.