Illustrations by Ansh Sirohi.
Like many millennials in their 20s, Anna* (not her real name) knows what she wants and is not afraid to express it online. Her blog Disabled Fables is about sex. It has black-and-white pictures of her lying—naked, with a lace cloth draped provocatively over her breasts and hips—on fuzzy sheets.
Unlike many millennials in their 20s however, Anna is suffering from muscular dystrophy, a disease that causes her to lose muscle mass (and weaken) over time. This means she is physically disabled, unable to dress herself or even change positions without the help of a caregiver.
Anna leads a full life despite her disability: she is currently pursuing her Masters in creative writing, and loves travelling and checking out the latest museum exhibits. She also uses a dating app to meet potential partners.
For a long time, however, there was a part of her that remained unfulfilled. In her blog, she wrote: “I was and still am perpetually starving for touch. People touch me because they have to, it is pretty much entirely clinical, and it does nothing to feed the soul.”
Years of pent-up frustration—and an eventual sexual awakening—led Anna to blog about her experiences early this year.
“I was tired of no one acknowledging my sexuality. As a teenager, I had to beg my mother for the HPV vaccine; she thought it was unnecessary with my supposed perpetual virginity. Doctors would check the “not pregnant” box way into my adulthood without ever asking me if I was having sex—I wasn’t, but the point here is ableism and how I was playing into the stereotype,” wrote Anna, adding that her virginity has become a sort of “scarlet letter.”
Such stories within the disability community aren’t uncommon. By forgetting that disabled people are first and foremost people, and therefore sexual citizens, society has been discounting their right to exist as full-fledged human beings since time immemorial.
Growing up, Jake* faced similar problems.
“I was once told I could never be in a relationship or get sex without paying because I’m disabled,” said the 31-year-old with spinal muscular atrophy (SMA).
“SMA has caused me a lot of confidence issues. My body is not what the average person would call average. I never thought anyone could ever find me attractive, nor did I ever think I could satisfy a partner in the bedroom.”
A “technophile”, he spends most of his adult life in front of the computer, chatting with friends, gaming, and dabbling in graphic design: “Sitting at my computer is where I feel most at home. While at my PC, I feel as if I am mostly ‘normal’, since my disability is not seen nor does it have major effects on what I do.”
Discontented with his lack of physical affection, Jake began posting nudes and videos on Reddit at the age of 28.
“When I first posted, I was in a really bad place mentally. I hated my body, I was lonely, and my self esteem just didn’t exist,” he said.
Then something interesting happened. The response, when it poured in, allowed him to see his body in a new light and shed his sexual inhibitions.
“The comments I got on my videos and photos ranged from flattering and flirty comments, to straight up creepy. Unfortunately, there are some people out there who do not see disabled people as people, but as objects to be abused and used like a sex toy,” he said.
“Either way, I’m an exhibitionist, so I still enjoyed the thrill of being seen.”
However, not all disabilities are like Anna’s and Jake’s. While the WHO has reported that people with disabilities make up 10% of the population (this figure increases to 16.6% in Asia Pacific), people with invisible disabilities also suffer from sexual dysfunction brought about by certain illnesses (ie. depression, cancer, autism, etc.) and ageing bodies.
Two-time rape survivor Sydney Chin—who was diagnosed with anxiety, depression, and, more recently, PTSD—is one such person.
“During the early part of my recovery from sexual violence, foreplay was harder for me. I have triggers still from certain sexual acts,” said the 23-year-old, who now works as a survivor coach and sex guide to help others work through their own issues.
Sydney is disabled too, even though it isn’t obvious at first glance. Society is littered with casualties like her—lots and lots of people like her—whose needs are also being overlooked: “The last major relationship I had was with a fellow disabled person who had anxiety and depression. It was hard balancing both our mental illnesses at times and it caused stress in the relationship.”
But here’s where it gets tricky: in a culture that idealizes restraint and saving face, sex is a lot like money and finances: off limits. It is something one simply does not discuss openly in Asia. Throw a person who is disabled into the equation and we’ve got an enormous elephant in the (bed)room.
“Being Asian has made it harder to address my disability,” Sydney said. “The diaspora often forget about disabled Asian diasporic even though we exist; there is so much erasure.”
There are plenty of other harmful misconceptions surrounding sex and people who are disabled. One of the biggest ones, according to sexologist Dr. Martha Lee, is that they don’t need or want sex and therefore don’t need sexuality education.
Like most of his peers in the disabled community, Jake has minimal access to information in school and at home (“I was pretty much told abstinence and condoms should be used”). He did, however, receive plenty of informal “education” online.
“Porn is terrible for learning about sex, but I managed to pick up a few things. I also realised early on there was no one like me in porn. This hurt in its own way,” he said.
It isn’t just porn. While representation in mainstream media of other sexual minorities like trans people and bisexuals has been increasing over the past several years, sex-positive people with disabilities remain largely invisible. In Asia especially, we are busy chasing the myth of the perfect body while the bruised, the broken and the battered are sequestered to a parallel universe, filled with pain and devoid of pleasure.
This absence—of education, representation and a support system—makes an already vulnerable community even more susceptible to abuse and exploitation. An Asian Pacific study by the UN found that adult women with disabilities are at least 1.5 times more likely to be physically and sexually abused than women without disabilities, while the US Justice Department reported that those with an intellectual disability are particularly at risk, as they are sexually assaulted at a rate seven times higher than those without disabilities.
It is this problem, amongst others, that Dr. Lee is trying to address with the Sugar & Spice Festival.
First organized by Dr. Lee in late 2020, this virtual festival aims to “impart positive messages and learning around sex” in Asia. It also has a special sexuality, illness, and disability forum aimed at empowering the disabled community with information. Sydney will be a panelist this year, while former national Paralympic swimmer Theresa Goh made an appearance last year.
Sex-positive and queer, Theresa has had spina bifida since birth, and has no use of her lower limbs. Even though the 34-year-old struggled with her sexuality when she was younger, having self-esteem issues was never an option for her: “Being in the spotlight as a competitive swimmer pushed me to be more confident. I have had to travel and meet people, to speak to the media, and to be on stage to share my experiences.”
She is currently in a committed relationship with an able-bodied woman and, earlier this year, they started a YouTube channel together called “Kopi Oh No! with TG and Keth” to discuss life as a queer, inter-racial, inter-abled couple in Singapore.
“Personally, any lack of sexual fulfilment I’ve had isn’t related to my disability,” said Theresa. “It helps to have a partner who’s willing to explore and when we both openly communicate our desires and boundaries in bed. I think this applies to whether either partner has a disability or not.”
Meanwhile, Anna has managed to liberate herself from her “scarlet letter” to a younger man she met on a dating app. She was 24.
“It was nice,” she said. “I was older so I didn’t have any romantic expectations; I was just ready to have sex.”
“Sex doesn’t hurt for me. I have some positional limitations but can do most traditional positions just fine. With new partners, I am always upfront about my limitations.”
Sexual intercourse has not been an issue for her either, but finding a boyfriend is. She is, at the time of writing, still looking for the right person.
“Guys like sleeping with me but I’m not who they want to introduce to their friends and family. I have wanted to be in serious relationships with some of them but they don’t,” said Anna, describing herself as a ‘closeted hopeless romantic’.
Jake lost his virginity at the age 30, and is now in a serious relationship with that same woman. The couple first met on Jake’s Reddit page. After conversing online for a year, they embarked on a romantic (and real-world) affair that is now well into its first year.
“The best part wasn’t even the sex though,” he said. “It was afterwards. Looking into the eyes of my completely satisfied soon-to-be partner made me realize how deeply I cared for them and how I wanted more than just to be friends.”
They plan to buy a house and move in together once the pandemic is over.
But we don’t live in a fairytale and not all stories have a happily-ever-after. Clichéd as it sounds, the journey is sometimes more important than the destination for many people with disabilities. Anna couldn’t have described it better in her blog when she wrote: “This isn’t about the proverbial Prince Charming or Happy Ending. I don’t know if either of those exist.”
“It’s about kissing the frogs. All. The. Frogs. It’s about self-respect and self-esteem. It’s about learning to do what pleasures you when you have been taught you don’t deserve pleasure. It’s about bucking the status quo. It’s about figuring out what bodily autonomy means to you when you have never had it.”
We’ve been told for so long that bodies have to look and function in a certain way, but what if it doesn’t? Maybe it’s time to own ourselves—our gloriously flawed, ever-changing selves—and break free from the shame and shackles.
*Names have been changed to protect their identities.
The Sugar & Spice Festival runs from March 23 to 27 2021. Visit https://sugarandspice.asia/ for more info.
Want to tell us your story? Write to us at firstname.lastname@example.org.