My intimate life

“My partner must be a healthy, strong guy, so that there is enough of him for the both of us. He has to be able to carry me in his arms, bathe me, dress me, cook for me and put toothpaste on my toothbrush,” says Aldona Plewińska. A deep voice, very articulate. You can hear the confidence in her voice and read it on her face. She works in debt collection. She calls customers and reminds them to pay overdue invoices. Aldona’s second profession is a photo shoot model. She’s been in dozens of photo session. She was born 30 years ago without both arms and her right leg.

I HAVE ONE LEG AND I CAN USE IT TO JUMP

“As far as sex education is concerned, I was self-taught; I scoured the Internet for what I needed to know. My parents didn’t talk to me about it, but it’s to their credit that I’m doing as well as I can. My mum told me to take everything on the chin and not to ask the question: why me? And that when she serves me dinner, I’m to eat it by myself.”

Aldona can’t get dressed by herself, but she can undress herself. She won’t push her wheelchair, but she can jump on one foot if she has to. She skewers food on her fork held between her stump and her cheek, puts it on a plate and uses her stump as a lever lifting the food-end of the fork to her mouth. She brushes her teeth, holding a toothbrush under her armpit.

“Compared to that, having sex is really easy. I don’t feel like anything’s wrong. Sometimes insecurities come up when there is a position that I can’t quite figure out, but then I try to compensate my partner by giving him one hundred percent in a different way.”

She had her first boyfriend when she was 14. With him she experienced her first cuddling, touching, she showed him her naked body. She became a real woman at the age of 18. With a boy she met on Sympatia.pl.

“I posted a picture of myself down to my shoulders. We wrote to each other for a few days, we became attached to each other. Only then did I tell him about everything. And he accepted it. We were together for a couple of years. Later on, I tried the same method on the site, but I got burned several times. Most people would write things like, ‘Okay, thanks, I have to go’, after I told them. Or they wouldn’t write back at all. Now when I want to get to know someone, I reveal my cards soon after I start writing to them.”

Aldona has yet to find a steady, but she has had several satisfying relationships. She attracts men. This is most certainly influenced by her remarkable photographs circulating online. Twelve years ago she went onto the website Maxmodels.pl, where she read, “Post your photo and let yourself be found.” She posted one. And they found her. Her appearance has inspired the imaginations of photographers. From a romantic session in a hat to a gruesome photo shoot with bloody bandages, through Aldona portrayed as a wired mannequin.

She does not pose for nudes though. She thinks that in her case nudity would be too much. She quickly began to be recognised. Articles and interviews appeared. She got a lot of words of admiration, congratulations. A bit of hate came up once or twice, “Some girl wrote in a comment that how come I do not have arms and a leg, and I have a boyfriend and a job, when she is healthy and pretty, and she does not. Someone else said that I shouldn’t show myself in public with this look, because it’s disgusting. I laughed at that, of course.”

Her father is no longer alive. Aldona lives with her mother who is her legs and arms. But if she has a boyfriend and spends part of her time at his place, he takes over all the responsibilities.

“I need to be carted around, carried and so on. But none of the guys I’ve been with has had a problem with this. What can you do with me? Basically everything you can do with any other girl, except some things require a lot more willingness. I went to Woodstock a few times with my second boyfriend. So anything is possible.”

“And do you support the Women’s Strike?” I ask.

“Yes, because I know that if my child was to be disabled, I would definitely abort them. I wouldn’t be able to take care of them myself, and I wouldn’t let my partner struggle with them like my mum does with me. And I wouldn’t like to condemn this child to such a difficult existence. My mum has completely devoted her life to me. She can’t leave me for more than an hour or two. She only rests when someone else can look after me. She, of course, says it’s fantastic that I am here, but I know what it’s like. I say, ‘I would abort myself.’”

I’D RATHER HAVE SEX THAN WALK

Stephen Hawking, a paralysed astrophysicist (three children); blind musicians Stevie Wonder (seven children) and Ray Charles (twelve); Oscar Pistorius – South African runner with no legs – currently in jail for shooting his fiancée; Chantelle Brown, a black supermodel with vitiligo – white spots on her face and body; Melanie Gaydos, as a result of hypohidrotic ectodermal dysplasia, is bald, has deformed facial features, nails, teeth and skin problems – also has a career in modelling; Viktoria Modesta, a model and singer from Latvia, who had her leg amputated, promotes designer prostheses; Aimée Mullins, an American athlete without legs, who walked in Alexander McQueen’s shows wearing wooden prostheses sculpted in the shape of high boots – “People” magazine listed her as one of the most beautiful people in the world; Heather Mills, a model without a leg, who married the idol of many women – Paul McCartney...

No one would say that these people are asexual, because sexuality is an energy that intrigues and attracts. We may not always be beautiful and healthy, but we can be attractive.

The sexual needs of people with disabilities are no different than those of healthy people. And just how powerful they are was demonstrated, for example, by doctors at the University of Montana, who in 2007 conducted a study on 681 people after a spinal cord injury. 75 percent of them were male. They had to answer the question, “Which of your lost functions would you most like to regain?” Paraplegics (with leg paralysis) most often marked sexual functions. Tetraplegics (with arm and leg paralysis) marked them as second only to the ability to use their hands. Turns out that people, especially men, would rather have sex than walk.

In 2020, the Avalon Foundation conducted research on 803 such people in Poland as part of the Sekson project, which aims to dispel stereotypes and myths about the sexuality and parenting of people with physical disabilities. 91 percent of them were under the age of 55. It turned out that as many as 36 percent of them had been told that because of their disability, sex-related matters did not concern them. Only 20 percent shared a similar opinion about themselves. 57 percent of respondents admitted to experiencing mental or physical barriers to fulfilling sexual needs. 69 percent had not encountered the concept of sexual rehabilitation, although most responded that if they had known about it, they would have been willing to receive it. And what is most interesting, Polish society more often perceives women with disabilities as asexual than men. Meanwhile, it is disabled women who have sex more often than disabled men.

Żaneta Krysiak from the Sekson project team is of the opinion that things are generally getting better. Poles with reduced mobility are increasingly aware that disability does not exclude them from the sphere of sexuality, “The social and cultural dispute over sex education is paradoxically good because it has brought this topic to light. It is fantastic that people with disabilities are becoming more and more active. They often work in foundations for people with disabilities, of which there are many, and act as activists, normalising public perceptions of disability. Awareness campaigns in our country would be more useful to non-disabled people. Especially to doctors and officials who are largely stuck in stereotypes, prejudices and myths. People with disabilities are often infantilised and objectified. Media discrimination is also a problem. People with disabilities are still not present in commercials or TV series, and if they are, they play the role of victims. Non-disabled people still mostly do not understand that disability is not an extreme phenomenon, it is part of our biodiversity.”

RANKING OF GYNAECOLOGISTS

On the Dostepnaginekologia.pl website, the first Polish search engine of accessible gynaecologists’ offices for women with various disabilities, which includes also an educational tab for patients and medical personnel, you can watch the following video: a wheelchair-bound woman, accompanied by her non-disabled female partner, enters the office of a gynaecologist. So we are dealing with a person exposed to threefold discrimination in our culture: as a woman, as a person with a disability, and as a lesbian. The doctor instinctively turns to her companion, “What can I do for you?” The woman in the wheelchair points out that she is the patient. “Oh, well, in that case, what brings you here, dear?”, the doctor corrects herself. The patient is indignant. She is 38 years old and does not wish to be addressed this way. She came for a check-up after all. The doctor suggests to her companion that in that case she should help move her partner to the gynaecological chair.

The video is slightly exaggerated, but based on the real experiences of Polish women in gynaecologists’ offices. They told their stories in a 2018 study conducted by the Kulawa Warszawa Foundation. The doctor was played by Izabela Sopalska-Rybak, the president of the Foundation, also a wheelchair user herself. In 2020, a website was created to, among other things, keep track of the ranking of gynaecological offices updated by patients with disabilities.

“A 30-year-old woman with an intellectual disability who came in for a prescription for contraceptives was told to come back with her mother. A patient with a mobility impairment heard from a doctor, ‘What do you need a gynaecologist for? You can’t be having sex, anyway.’ A blind woman was not informed by her doctor what activities he was going to perform, and without warning he started to touch her intimate parts,” Izabela recalls from memory the experiences described by the respondents. She herself was once dismissed by a gynaecologist. “Patients usually make appointments with a specific doctor, I make appointments in a specific office, one where the chair is lowered. And despite the fact that when making an appointment I constantly stress that it is essential, a few times I ended up in the office without a proper chair. ‘Well, unfortunately, I’m not going to carry you,’ the doctor spread her arms and the examination didn’t take place. I also heard about a situation in which in a clinic a patient was moved onto the chair by workers from the construction site next door. Meanwhile, the regulations are clear: offices must be adapted for people with disabilities and it is the clinic’s own duty to provide them with examination facilities.”

Izabela adds that unpleasant situations at doctors’ offices also happen to men. “A friend who is paralysed from the waist down had a urological examination. He warned the doctor that he thought he was about to urinate. He heard, ‘Just pee yourself, please.’ This is mind-boggling to me! In Germany, in such a situation, the doctor immediately provides a container. It’s a matter of respect. If someone said something like that to me, I’d probably get up and leave. Ha, ha, ha.”

AN APPEALING COMBO

Izabela Sopalska-Rybak is 32 years old. She has been in a wheelchair since she was 23 years old with multiple sclerosis. She had once intended to become a PE teacher. She played basketball for years. Now she plays rugby, but in a wheelchair team. It’s also normal that she continues to have sex. A month after she stopped walking, she met her husband. They got married after three years. “I’d never gotten nearly as much attention from men as I did when I started moving around in a wheelchair,” she recalls. “The first month in particular was amazing. I would meet a man at a party and he would suggest going on a date. In the parking lot outside the mall a guy came up to me and started hitting on me, he said I was very attractive. A friend told me that he thinks it stems from the fact that I’m an incredibly cheerful person, and when you add a wheelchair into the mix, it makes for a very optimistic, appealing combo. Interestingly, I didn’t used to be so cheerful at all. I was diagnosed when I was 19. The shock and breakdown lasted three hours. And then I realised that I needed to find a new way to live. From then on, I stopped worrying about silly things. So I don’t really experience a lot of problems.”

During that first month, a mutual friend set Iza up on a blind date with his friend.

“Rafał was shy, rather introverted, but something clicked between us right away. There is a bus stop at Na Rozdrożu Square, which is accessible only by stairs, and it was there that Rafał carried me in his arms for the first time. I joked that since he’s not out of breath, he’s strong and maybe something will come of it. We’ve been together nine years, it’s ben five years since we got married, and we want to have kids. The disease is not an obstacle. I love my life, and I wouldn’t trade places with anyone.”

WHAT’S YOUR SUPERPOWER?

The feisty Aldona Plewinska is the exception that proves the rule. Because supposedly, for those born with a dysfunction, it is more difficult to function with it than for people who acquired a dysfunction as a result of an illness or accident, that is, they have had a certain period of experience as non-disabled people. This is especially true of the sphere of sexuality.

As a result of cerebral palsy at birth, Beata Ebert moves around on crutches. She runs the Pewnymkrokiem.pl blog and a fan page on Facebook, where she posts her entries and cartoons that open discussions on various aspects of disability, including ones of a sexual nature. She makes no secret of the fact that she herself has a problem with this.

“My needs are suppressed,” she admits. “But I also wouldn’t say of myself that I’m asexual. And I’m not considered as such. Men tell me I’m pretty. And relatives ask every now and then when I will find someone, what’s going on in my heart.”

Beata has set up a Tinder account. She says she is mainly driven by a desire to see how others perceive her, and would like to learn the art of flirting. She still can’t choose the right strategy. The basic question is: at what point do you disclose your disability?

“Honesty dictates you do it right away, but when I posted a picture of myself on crutches early on, I got questions like, ‘Is that permanent?’” And when she said yes, the conversation broke off. One thing she remembered in particular was, “I heard people with stumps for arms are great at fisting. What’s your superpower?” “It was off-putting to say the least.”

Beata seems to want to be with someone, but she doesn’t really either. She associates being in a relationship with problems instead of a sense of security. Maybe it’s because she witnessed her parents’ difficult marriage. She doesn’t want kids. Kids are too fast, they provide too much stimulation, she could never keep up with them. She doesn’t like very masculine men because they are associated with aggression. She sees a bald guy and thinks: oh, too much testosterone. She fell in love online several times with guys who turned out to be gay. She has trouble getting out of the friend zone. She had only been in a real relationship once. Which quickly fell apart anyway. “I could use some thorough psychotherapy. I know,” she admits.

DON’T GET MARRIED UNTIL YOU’RE 30

Psychotherapy really helped M. Beata’s peer, like her, was born with cerebral palsy and also walks around on crutches. She prefers to remain anonymous. She writes of herself, “I’m an aesthete, a romantic. I have my head in the clouds. I write a lot – about life, therapy, love. About the road to one’s self.”

“Sex was a taboo subject at home. The first time I went to a gynaecologist was when I left for college,” she says. “My father didn’t participate in our upbringing. My mum was practically left alone with us. I have a twin sister, also with palsy, but milder, she can walk on her own. Our mum was a typical overprotective mother. She would tell me, ‘You should stay home and study.’ There was nothing I could do at home because my mum said that I would not manage. She wanted to keep me at the baby stage. She told me once that she permits the thought that I would have a husband someday, but it would happen in the distant future, ‘Sure, maybe when you turn 30.’ There were times in high school when I had a boyfriend, but we never got down to it, so to speak. I was very afraid of intimacy. It seemed to me that sex was somehow something I couldn’t handle. At some point it turned out that my disability bothered the guys. Everyone would back out sooner or later. I dated one for three years, we got along great and he was the first one to start talking about getting engaged. I was overjoyed. But then his parents intervened: ‘Why are you with a disabled girl? You can have anyone, after all.’”

This disappointment made M. even more withdrawn. She couldn’t see herself any differently than through the lens of disability. It seemed to her that her crutches disqualified her. Even to go to a psychotherapist, you have to have some self-esteem, and she thought her problem was too trivial. Normal people go to therapy when they’re depressed, and her? She’d come and say that she is sad because she cannot find a boyfriend?

“But when I made up my mind, it turned out to have been a step in the right direction. The therapist helped me bring out my femininity and self-confidence. I came to believe that my disability did not define me. I felt it. Soon after, I met my now husband online. He had a disabled mother. So he was familiar with disability, my limitations were not that much of a problem. With him, I finally felt comfortable and safe. There was intercourse. We’ve been married for five years and now we’re planning to have a baby.”

(FEMALE) SEX COACH

Around the world, there are institutions of sex assistants/coaches who work with people with disabilities – usually severe, also intellectual – on the positive perception of their bodies and on opening them up to their own sexuality. They have a psychological and physiological background, and their credentials are confirmed by a license issued by the World Association of Sex Coaches. In the Netherlands and Belgium their services are covered by social insurance, in others they are funded by NGOs. You contact them through therapists. In Poland such a therapist would go to jail for pimping, because although the work of sex therapists is something different than prostitution, they do de facto have sex with patients. Disabled Poles are therefore condemned to using escort agencies. Usually, it is the parents who order such a service for their son to enjoy at home. Except Polish sex workers avoid clients with disabilities. They have no idea how to go about such a service from the technical standpoint, how much a disability can affect the act. They prefer to say no.

Licensed sex coaches are usually former sex workers, from feminised sectors: sex, erotic massage, phone sex, stripping. In Germany, for example, training for sex coaches is an idea aimed at helping women who want to get out of prostitution. Maybe that’s why the coach almost always turns out to be a woman and the patient – a man. Ladies with a profound dysfunction have a much lower chance of finding professional help. Though they undoubtedly need it too.

One of the few qualified male sex assistants in Europe is Dimitri Zorzos from Spain, who chose the profession after recovering from several years of post-stroke paralysis himself. “He helped me a lot. Before, I was sad and depressed. For me, these meetings are like therapy. Now I am very calm,” says his patient in the film documentary “Jo també vull sexe!”.

“Sexual rehabilitation in its beginnings focused exclusively on men. It started only in the second half of the 20th century, after World War II and the Vietnam War, from which masses of mutilated men came back, frustrated because they could not fulfil themselves sexually,” Marta Lorczyk, a 29-year-old expert in the Zdrowie Jest Najważniejsze [Health is the Most Important] Foundation, tells me. She is in a wheelchair herself and suffers from muscular dystrophy. “If you look at the literature on the sexual problems of people with disabilities, it focuses on erectile dysfunction. The sexuality of women with disabilities is a new topic.”

The struggle of people (men, of course) with disabilities for the right to full inclusion in society was part of the American civil rights movement of the 1960s. Vietnam veterans were joined by disabled students from the University of California. The university authorities set up a centre for them, where therapists, among other things, put their charges (men, of course) in touch with sexual assistants. There is no mention of female students with disabilities in the literature.”

Marta Lorczyk works at the foundation on promoting the sexuality of people with disabilities and conducts training for their personal assistants (not to be confused with sexual assistants). “I explain to them how they should behave when confronted with the sexuality of their charges. There are times when an assistant hears from their charge that they’re supposed to help them get to a date or to a sexual appointment, and they’re in a bind because they don’t know if they should ask their charge’s parents’ permission first. Or they come to their charge, and there’s a baby there. ‘How could a guy with paralysis manage to conceive a child?’ they wonder. I’m here to fight stereotypes and the idea of thinking of people with disabilities as minors.”

“What is something that people with disabilities don’t know?” I ask.

“For example, the fact that even after a spinal cord injury, sex is possible in most cases. The man just needs to wait for his body to adapt to the new situation. Up to 80 percent of men regain at least partial erectile function two years after injury, and the quality of the erection depends on the use of aids. And I don’t just mean Viagra, either. On the other hand, women post-SCI fear that they will never have an orgasm again. The truth is that a lot depends on what kind of injury it is, because what matters is: one – the height of the injury and two – whether the spinal cord is completely severed, and so on... It may be that the woman can feel penetration, but only when it’s very deep, such as when the penis reaches all the way up to the cervix. Some women can be brought to orgasm through nipple stimulation. Toys, the position, mood and lubrication are all important. And the most important factor – patience. The problem is that Polish women in general are not willing to experiment in this area. That goes for the ones without disabilities as well.”

Let’s see. The range of sexual equipment on the Internet is aimed at both sexes. There are sièges d’amour whereby the man with the drive of his elbows is able to set his hips into a frictional motion. There are vacuum pumps that will give you an erection, there are special stimulators for ladies and vibrators for both sexes. Various seats for couples can also be purchased that help you get into a comfortable position. It’s just that the prices are a bit terrifying.

A medical vibrator for women after a spinal cord injury – “the strongest ever made” – costs 3,500 zlotys. Paralysed men who dream of an erection with ejaculation have to pay 3,190 zlotys for theirs.

“Ms Lorczyk, why do you think men with disabilities are not willing to talk about their sex lives?” I ask at the end, because so far, a lot of people have responded to my call for an interview, but they have only been women.

“Women nowadays want to talk about everything that affects them, they are learning to reject shame because they kept quiet for so many years. They’re riding the wave. Everyone suddenly wants to listen to us. Men, I suspect, don’t really like talking about their weaknesses because they think it takes away from their masculinity. And besides, their friends might find out,” Marta laughs.

NO BREAKDOWNS

Michał Żyliński runs the Zerozalamki.pl website and the Zero Zalamki (No Breakdowns) fan page on Facebook. On his profile, instead of a background photo, he posted a video of himself speeding down the road on a handcycle – a three-wheeled bike powered by the movement of his arms. Energetic music, flashing slogans: Challenge, Fight, Never giving up.

Prior to the accident, he did athletics, played football and beach volleyball. He has now swapped all those sports for para-cycling. He turned 28 in 2016. On March 8, he was with his girlfriend in Switzerland. He was snowboarding and had a rather unfortunate fall onto his back. The verdict: paralysis from the chest down, confined to a wheelchair for life.

“When did the ‘will I be able to have sex’ question come up?” I ask.

“It certainly wasn’t my first thought. A fight for my life was going on in Switzerland. After about two weeks, I was transported back to Poland. The doctor here only hinted at it, rather optimistically, but did not dwell on it in any great detail. Neither him nor the physiotherapist.”

“How was your sense of masculinity?”

“It was shaken. Disability runs counter to the stereotype of masculinity, of someone who is independent. Questions start popping up. And that’s quite difficult.”

You can still read his girlfriend’s post from the time of the accident on Zerozalamki.pl: “I can’t believe this happened to my beloved boyfriend, the best in the world, the one I always dreamed of. Michał is strong and his strength gives me the power to be just as strong. The power of two! I will be his legs, his spine, his everything...”

Six months later, the relationship was over.

“Perhaps my partner was overwhelmed by this new situation. Although there is never just one reason,” says Michał. “That was the most difficult experience. The early stage, I hadn’t worked some things out yet, I hadn’t learned. I was on the brink...”

“Of a breakdown?”

“You could say that. For a lot of people, this situation may have been insurmountable. But I made it. I’m a goal-oriented person. I quickly began to focus on what was possible. And I saw that people who are paralysed are happy too. They do sports, travel and enjoy the fullness of their humanity.”

Shortly after leaving the hospital, Michał went to a camp organised by the Foundation for Active Rehabilitation: “It’s a great initiative. There are instructors in wheelchairs there who share both knowledge and personal experiences. There’s a lot of talk about sex. That’s where I learned everything.”

Michał has been in a new relationship for a while now. Don’t look – that’s the best way to find, according to him: “It’s better to focus on developing your passions. It’s crucial that a prospective partner sees us when we’re pursuing it,” he advises.

Monika and Michał were brought together because of an electronic attachment for his wheelchair.

“I bought myself an electric scooter, a locksmith disassembled it for me and made a bolt-on wheelchair attachment as per my instructions. Now, when I want to cover a particular distance faster, I can ride my wheelchair like a scooter. That day I went to the lake to test the wheelchair attachment and I met two nice girls. They became interested in the wheelchair attachment, and it turned out that one of them had a partner who was also in a wheelchair. The other was Monika, and I liked her smile right away. We started talking and e-mailing. We went on a date pretty quickly.”

Monika is a PE teacher, a hockey player, and a fitness instructor. He does para-cycling, goes to competitions, wins trophies. They share a common lifestyle and passion.

“And what about sex?”

“People who are post spinal cord injury have sex a little differently. Sometimes the erection needs to be stimulated, some need to use Viagra for this purpose, for instance. But sex has other forms too, there’s oral sex, petting. What matters is how your partner perceives the stimuli. The person post spinal cord injury assumes the role of observer, giver of pleasure and receiver of her sensations. Since our sensory perception is impaired and we feel less ourselves and our pleasure is mainly visual and tactile, we are more likely to focus on the sensations of our partner. We find that just being part of the act is something very stimulating. A unique and fantastic form of fulfilment,” assures Michał.

 

Author: Katarzyna Surmiak-Domańska

Marta Lorczyk in the Zdrowie Jest Najważniejsze Foundation deals with the promotion of the sexuality of people with disabilities and conducts training for their personal assistants. Michał Żyliński runs the Zerozalamki.pl website; he practices para-cycling, takes part in competitions, wins trophies

Photo: Dawid Żuchowicz / Agencja Gazeta

The text was published in „Duży Format" on 22 March 2021 

 

 

 

 

 

The Kulczyk Foundation cooperates with the Avalon Foundation, implementing the Sekson project. It aims to help people with motor disabilities through education and changing awareness about their intimate life and parenthood. More information about these acivities can be found on the following websites: sekson.pl and kulczykfoundation.org.pl, and on March 28 on TVN and Player.pl as part of the eighth season of “The Domino Effect”.