BEIJING — A spinal tumor paralyzed Nie Shujie’s legs when she was little. Growing up, she never considered intimacy possible. Nie was ashamed of her own body and wouldn’t let herself think about sex. She was never rejected, but she also never gave anyone a chance. “I wasn’t sure whether I could or should have sex,” she says from her wheelchair.
At an event for people with disabilities, Nie met her future husband, who has a hunched back. They married in 2014. “Before I met him, I didn’t dare think about marriage, because I’m severely disabled,” she says. “I have so many concerns. Can I satisfy my husband? Can I get pregnant and deliver a baby?” She says her husband understands her, and she feels comfortable around him. But her insecurities are hard to shake. Nie doesn’t like the way her body looks or feels, she says. “It still takes a lot of courage for me to undress in front of the man who’s deeply in love with me.”
China was among the first countries to ratify the Convention on the Rights of Persons with Disabilities in 2008. Nevertheless, many of the over 85 million people living with disabilities in China still struggle with myths and stigmas that they are not sexually attractive, not interested in sex, and not worthy of marriage — unless it’s with someone who also has a disability. “People assume that having a disability means losing sexual attraction, desire, and ability,” says Cai Cong, project director of Youren Foundation, a nonprofit organization for disabled people.
Cai believes that, in order to become sexually active, people with disabilities must first get to “know, feel, relax, and eventually accept their own bodies.” In 2013, Youren started organizing events and lectures for people in the community to explore their bodies and openly discuss sex, and found poetry to be the most effective method. “Anyone can write a poem, since there’s no fixed form, and writing and reading poems together can help them sympathize with each other,” says 32-year-old Cai, who is visually impaired. “It lets them feel the connection and power of life, which can give them more courage to face the pain and discrimination they deal with in daily life.”
In September, 35-year-old Nie and about 20 other people with disabilities from all over the country gathered in Beijing for a workshop on disability and sex co-organized by Youren Foundation. Many were reluctant to divulge much about their sex lives, or lack thereof. Even though the poetry workshop was named “Disability and Sex,” only a few people wrote about their sexuality.
Such events have been helpful to some participants, allowing them to recognize they’re not a burden to their partners and that they have the same rights as anyone else. Despite these achievements, Cai says the disabled community itself still isn’t open enough, but that this is something you can’t rush. While people who do not have a disability in other countries feel self-assured enough to visit nude beaches, “people with disabilities in China are at the stage of slowly removing the cloak society’s wrapped around them,” he explains.
Youren Foundation plans to publish the poems so more people with disabilities will read them. Cai believes that, before getting society to change its views toward people with disabilities, it’s crucial to first awaken the community itself. “If they can look at their own bodies and accept that they’re unique, the rest will follow,” he says.
After participating in the Beijing workshop, Zhao Xin organized a similar event in Baoji, his hometown in northwestern Shaanxi province. He guided participants to talk about sex, but they showed more interest in discussing how to find a date and how to look good and attract people of the opposite sex. Just like at the Youren event, few wanted to talk about their sex lives.
While China’s assistance for people with disabilities and their sexual needs doesn’t go beyond discussion or dating events, other countries have more far-reaching initiatives. The Dutch government, for example, grants benefits to citizens with disabilities so they can access sex services a certain number of times a year. In Japan, volunteers at nonprofit White Hands help those with mental and physical disabilities to orgasm. “This kind of service is great, but is simply impossible in China, since it goes against public order and morality,” Zhao says. Prostitution is illegal in China, and Zhao says that currently no organizations in China offer paid or free sex services for people with disabilities — at least not publicly. “All authorities can think of right now is organizing dating events for us, but they don’t understand,” he says, pausing. “Sometimes, we’re not looking for marriage; all we want is just to have sex.”
In his early 30s, Zhao, now 39, lost vision in his left eye due to spondylitis — an inflammation in the spine. Afterward, his girlfriend of seven years left him, after pressure from her family. “I was in so much [emotional] pain, and it took four years to adjust,” Zhao tells Sixth Tone. He then found a job at the local branch of the China Disabled Persons’ Federation, where he met his current partner. The pair have lived together for years and plan to get married soon.
In less-developed areas of China, like Zhao’s hometown, men with disabilities face even greater challenges when finding a partner. Decades of family-planning restrictions, coupled with a cultural preference for sons, mean there are now tens of millions more men than women. This gender imbalance is most pronounced in poorer, more rural areas — especially for disabled men. “Being disabled often means [having a] low income, and parents question how a poor and disabled man can provide their daughter with a better life,” Zhao says. “Even divorced women wouldn’t lower their standards to marry a disabled man here. But, on the other hand, if a woman has a slight disability and a job, she can easily find an non-disabled husband.”
Li Shengping grew up in a rural part of northwestern Gansu province. Now 25 and a master’s student in Shanghai, Li’s only ever had one romantic experience: with his classmate. Because of her, he realized someone like him, born with misshapen hands, could be liked by non-disabled girls. “Unfortunately, I had low self-esteem back then, and I blew it,” he says. When hanging out with his male friends, Li says they sometimes talk about sex, porn, and women. Li has little to share on the topic. When he has sexual desires, he chooses to distract himself by reading or exercising. “I’m a nerd,” he laughs. “But now, I have no doubt that someday, I’ll marry my soulmate, and I don’t care whether or not she’s disabled.”
But even when people with disabilities find a partner, they’re not out of the woods yet. Parents of children with disabilities prefer that they marry a partner who does not have a disability to take care of them. “Even if that person came from a very poor family or was uncivilized, they would think ‘as long as she can see, that’s enough,’” says Cai, the Youren director. “When parents say something like this, we’re hurt.”
Cai’s parents are against the idea of him and his wife having children, as both of them are visually impaired. Nevertheless, they gave birth to their daughter two years ago, anticipating that she might have similar impairments. “Even if she was, we believe a child with a disability is still valuable, beautiful, and has the right to experience this wonderful world,” says Cai. The girl isn’t visually impaired.
But even some people with disabilities would agree with Cai’s parents, thinking that having a child would “bring tragedy” to the next generation. Liu Fang, who lost almost all of his hearing after being given unsuitable medicine when he was little, is one of them. His parents urge him to get married and have children, since he’s in his late 30s. Liu’s condition is not genetic, but he’s still worried he might have a child with a disability of some kind. “They can’t detect everything in prenatal checkups,” he says. “I’m already stressed, and if I brought another disabled life into the world, I just couldn’t take it.”
With hearing aids, Liu can hear 50 to 90 percent of sounds, depending on the environment. But the hearing aids can’t filter noise, and Liu says wearing them for hours on end is tiring and headache-inducing. He takes them out whenever he’s home. If he lived with a partner, he would always have to keep his hearing aids in, he reasons. “That’s why I’ve chosen to be single at the moment.”
Originally from eastern Anhui province, Liu has lived in Beijing for nearly two decades. He loves poetry and has a voice like a broadcaster. Girls have turned him down for his hearing impairment, and all the non-disabled women who have approached him only did so because they lacked self-confidence, he thinks. In terms of sex, he’s more than willing to “serve” his partner. “I think I’m not very confident in bed; therefore, I’d want to try all kinds of things to make up for it and please them.”
“To care for people with disabilities, you have to care about their sex [lives],” Liu continues. But the reality is that many people with disabilities in China don’t even think about having sex or building a family because it’s “hard to believe it could happen,” he says. In Liu’s opinion, China needs to work on social inclusion to increase the sexual autonomy of people with disabilities. Being different scares Chinese people, he says. “If we could teach children to embrace and accept differences, and give people with disabilities more access to study and work opportunities with non-disabled people, then, they wouldn’t feel so pressured when it comes to relationships and sex,” Liu says.
The public, including people with disabilities themselves, “views disabilities as defects, and finds it hard to accept their own flawed bodies, let alone consider them unique or beautiful,” says Bu Wei, a researcher at the Chinese Academy of Social Sciences. “As China hasn’t established a culture of equality, children with disabilities are very likely to be bullied at school, and in this environment, it’s becoming very hard for them to accept themselves and their own bodies,” she adds.
Nie, who took part in the poetry event, wrote about a qipao, a body-hugging Chinese dress, that a friend gave her three years ago. She never had the courage to wear it, thinking she wasn’t pretty enough. With her husband’s encouragement, Nie finally put on the qipao. “He tells me it looks beautiful on me,” she says, sobbing. “But I only have the courage to wear it in front of him.”
This article was published on Sixth Tone.