Love, Sex, & Disabilities ft. Netflix, Bollywood, & Other Storytellers
You’ve adored SRK in My Name Is Khan, you’ve pitied Vidya Balan in Guru, you’ve (hopefully) gone ????? at all of Koi Mil Gaya. Turns out the PwD doesn’t always get the guy/girl/person.
Welcome to Love, Sex, and Disabilities 101. We’ll cover:
- What are persons with disabilities (PwDs) taught about their sexuality?
- Do people with Intellectual and Developmental Disabilities (IDDs) date?
- What’s it like having a sex-life and a disability?
Look Ma, No Hands
The most obvious obstacles to a healthy sexual life for PwDs are the physical challenges. Issues of motor skills, mobility, chronic pain, and other considerations require additional care in a sexual context. For example, people with motor impairments may have difficulties with gripping, positioning, and stamina. Hence, even masturbation may require an assistive device. Products like the PULSE and DiGiT vibrators from Hot Octopus allow PwDs to circumvent some of these obstacles.
Sex-specialized assistive devices for people with disabilities are available but quite uncommon. “Sexual health is way down in the list of the different aspects of health to be taken care of,” a community member told me. Regular medicines, therapy, and daily living assistive devices themselves can weigh heavy on the average middle-class household income. Thus, especially in the Indian context, assistive sex devices haven’t particularly entered the conversation as a possibility.
Even further down the road is the conversation on sex-surrogacy. Simply put, this is where professionals trained in managing disabilities help clients explore their sexuality. This is not regular sex-work; sex-workers may not be specially trained to manage disabilities, intellectual or physical. Sex-surrogacy is specialised to meet the medical needs of PwDs, providing exploration beyond an orgasm. Given the taboo nature of sex (let alone paid sex) it is doubtful that such services will be considered legitimate in the Indian context anytime in the near future.
It’s also interesting to note that physical obstacles give rise to what the panelists at this roundtable consider an asset. The argument is that because PwDs learn to live in a world not made accessible to them, they’re used to thinking creatively. In bed, this translates to what they call “sexy problem-solving”. For example, one panelist’s “problem” was that she had a stoma bag flapping around during sex, and the “sexy solution” was high-waisted crotchless panties. Pretty genius.
Change is Hard
People with IDDs, especially Autism Spectrum Disorder (ASD), appreciate routine and regularity very much. Changes in routine can be a source of confusion and anxiety. The physical and emotional changes of puberty can thus be unsettling. Especially for girls getting used to their menstrual cycles, the sudden shift can have emotional weight.
Another important change that happens is when caregivers begin preparing the child for appropriate sexual conduct. A toddler used to very many hugs and kisses from their parents now is suddenly told not to give people kisses on the lips. Or a child who often changes with the room door open, now finds they are being told not to be naked around strangers. These necessary preparations are initially confusing and may cause distress to the child with IDDs. Thus, the instruction process of preparing young children for puberty requires a higher degree of sensitivity and more time for children with IDDs.
Many people with IDDs, especially ASD, have very specific sensory likes and dislikes. This can make different kinds of touches, smells, sounds during sex very discomforting. The smell from perfumes or lube, the feel of condoms or bedsheets or even kissing, and other seemingly minute sensory experiences could cause reasonable discomfort and thus pose a hindrance to sexual activity.
The opposite is also not uncommon — where sensory experiences commonly thought of as “sexual” provide a non-sexual satisfaction to PwDs. I remember the example of a toddler who would repeatedly touch his female teacher’s chest as a self-soothing mechanism. While this would otherwise be classified as a sexual gesture, the child’s caregivers determined that he was simply fulfilling his tactile sensory need. This was difficult for his teacher to accept, which led to a discord at school.
Such situations are common vis-à-vis other seemingly “sexual” acts such as taking off pants spontaneously or touching oneself. These are common instinctual gestures among children with disabilities, up until the point they are taught to satisfy their sensory needs in other, more socially acceptable ways. This process of teaching sexual conduct, however, may not be afforded to every child with disabilities. Why? That brings us to the next point…
The Eyes of the Beholder
PwDs are seen in the extremes of sexuality — asexual or hypersexual, either desexualised or fetishized. We see this most clearly in media representation of PwDs and sex/romance.
If you’ve watched Netflix’s Crip Camp, you’ll remember Denise. Denise spoke about how asexualising her as a woman with Cerebral Palsy (CP) led to unnecessary surgery. Her doctors assumed without examination that the pain in her abdomen had to be appendicitis. Only after removing a perfectly healthy appendix did they consider testing her for STDs. “The surgeon decided, how could I be sexually active??” she says.
Turns out, she just had gonorrhea. “And for one brief moment, I was so proud of myself!” she laughs. After that, Denise got a Masters in Human Sexuality.
The biggest consequence of this asexualisation is an exclusion from sex-education. Very often, parents of PwDs, especially those with IDDs, tend to simply overlook their children’s sexual behaviours. “हमारे बच्चों में तो ये नहीं है। This (libido) doesn’t happen to our kids.” This continues well into the PwDs’ teen and adult years, where it is silently assumed that there is no need to address sexual conduct.
This percolates into formal institutions too. For example, a panelist talks about how she and the other disabled children in her class were removed from the sex-ed session by default. She had to demand to sit in for the lecture, against her teachers’ cautions. Given such a climate, it is no surprise also that sex-ed isn’t made relatable to people with disabilities. There is never mention of non-verbal communication and consent, no images of amputees or other physically disabled people being part of the conversation.
Moreover, as one of my community members pointed out, “Asexualisation is a self-fulfilling prophecy. The constant denial of their sexuality makes PwDs insecure about expressing it. This restraint is then used to justify the initial assumption, that PwDs are inherently asexual.”
Remember Masooma from Khaled Hosseini’s And the Mountains Echoed? Her beauty was the talk of the town, men gawking at her on the daily. Till she suffers a spinal injury that leaves her wheelchair-bound. Hosseini makes it so the reader understands the gravity of how much she’s lost in becoming disabled. In her final scene, she makes her sister promise two things: to marry Masooma’s fiancé and to abandon her in the desert to avoid becoming a caretaker’s burden.
Hosseini brutally holds up a mirror to every society that in some degree desexualises people with disabilities. Now that Masooma is in a wheelchair, no one is romantically interested in her. Her situation is further dire since in being a woman, she was assumed to carry the caregiving responsibilities in her marriage. Now that she is the one in need of care, there is no question of marriage since no man is expected to assume caregiving roles for a disabled wife. In the real world, a serious illness befalling a wife has a statistically significant impact on the risk of divorce, while a husband’s illness has no such impact. Masooma’s disability makes her undesirable, more so as a woman.
Then there’s Priyanka Chopra’s character in Barfi. Despite being of age, she’s dressed in a child’s frock and bloomers, with school-girl curls and a hairband. We see her trying to put on a sari when she begins assuming wifely roles for Barfi, imitating the “attractive” woman she’s just met. She has to teach herself to dress the way most other women her age do because she’s been infantilised her whole life. And this evolution runs parallel to her “growing up” in the spousal sense as well.
This again is a clever subtle mirror to how families of PwDs view them. Clothing is the most obvious manifestation. In addition, you’ll find parents using lesser vocabulary or childish terms even for much older persons. Example: Chopra’s character asks Barfi to take her to ‘susu’ rather than the ‘toilet’ or ‘restroom’. This constant infantilization also helps normalize their exclusion from sex-ed.
Another interesting nuance here is the hierarchy of disabilities. Remember Baby and Gattu from Baa Bahu Aur Baby? Baby, who has polio, ends up with an able-bodied husband. On the other hand, Gattu, who has an IDD, forever remains loyal to Rani Mukherjee and no other romantic storyline is written for him throughout the show.
The character with a physical disability isn’t infantilized and rather depicted as independent and headstrong. The character with an IDD is infantilised and never shown in a real-life romantic/sexual light.
This difference in the way Baby and Gattu’s characters are conceived by the writers of the show is revealing of Indian social perceptions of the capacity of people with varied disabilities to have romantic/sexual experiences. Even within the disabled community, some disabilities face higher degrees of exclusion from the realm of romance/sex than others.
Further, it’s interesting to note an unintuitive consequence infantilization. Often, PwDs are told they’re “pretty hot for a disabled person” or that they’d “be hot if (they) weren’t disabled”. Further, PwDs get hit with “Can you have sex?” sometimes before “hello”. As the panelist at this roundtable points out, when people are asking this question, the underlying true question is ‘Is it ok for me to fancy you? Because you’re seen as somebody who’s not sexual, a bit child-like, needs care…you’re really hot but I don’t feel like it’s right to (think that way)…’
The sentiment “I’ve always wondered what it’s like to have sex with a disabled person.” is relayed unfortunately often to PwDs by strangers. For some reason people assume that given their “abnormal” situation, normal etiquette is thrown out the window. Comments and questions that would be perverse in any other context are all too frequently directed at PwDs. Other popular facepalm lines include “Is it all functional down there?” or (to people with dwarfism) “Is it all proportional?”
More starkly, there’s ‘devoteeism’ — the sexual attraction to the struggle of the disabled person. To illustrate, a devotee’s version of porn could be a video of someone in a wheelchair trying to get into a car or having a difficult time getting through a narrow space.
The disability community is divided on devoteeism. Some find it degrading that someone derives sexual pleasure from their pain. The dynamic may also become dangerous and violating when PwDs are videotaped without their consent or stalked by devotees. Others consider it empowering. When the rest of the world tells you your disability makes you less desirable, devoteeism may come as a breath of fresh air. This is buttressed by the fact that, as with any sexual preference, not all devotees are predators or resort to harassment.
If you’ve seen Netflix’s Bulbbul you’re familiar with the concept. Rahul Bose’s character has an IDD and does little besides raping the protagonist. Are people with disabilities capable of harassment? Of course. Was it harmful to feed into the common narrative of people with IDDs as violent and lacking control of their urges? Definitely.
This too is a self-fulfilling prophecy. When we label PwDs as hypersexual and shackle their ability to express their sexuality, it can lead to frustration, outbursts, anger, stress, etc. This sediments the initial assumption that the PwD is violent or lacks control of their urges, perpetuating the vicious cycle. All of which could’ve been prevented with early and sensitive sex ed.
Talk Consent to Me
Infantilizing, asexualising, and desexualising people with IDDs comes along with the misconception that they are unable to give consent. In the legal sense, this misconception has in the past led to an invalidating of marriages involving one or both partners having IDDs. On the social level, this amounts to invalidating IDD sexual relationships in general.
First off, any blanket statement about people with IDDs neglects the wide range of symptoms and severities of each IDD. All PwDs — even those with the same diagnosis — have different combinations of abilities. Thus, such an extreme generalization about the ability to consent does an injustice to the individuality of PwDs.
Second, the truth is that PwDs (and it seems ridiculous to have to spell this out) are perfectly capable of having meaningful consensual romantic/sexual relationships.
Navigating consent, like any other skill, is teachable. Even people without disabilities need to be taught to ask for and determine consent. All that we need is the willingness to take the time and effort to explain consent thoroughly in a manner that makes sense to the PwD.
An easy way to understand this is to draw a parallel to language. You wouldn’t say an Urdu speaker can’t consent just because they cannot consent in Hebrew. If the question is posed in Urdu and they’re allowed to answer in Urdu, their consent is valid. Similarly, if the question is posed in a manner that makes sense to the PwD and they are allowed to communicate likewise, their consent is valid.
Of course, there are definitely cases where the gap in communication is so severe that communicating consent may not be possible. However, this must not be the assumption with which any PwD’s sexuality is approached. Giving them due justice would be to try every means possible to allow any and every child to understand and communicate consent.
Beyond the scope of this essay, but the indirect implications of these negotiations are that the law allows courts to order abortions for women with disabilities. Forced sterilization is also unfortunately common in India.
All these practices have their root in the assumption that someone declared to have “unsound mind” should have little agency over important bodily decisions.
Privacy vs. High Support Needs
There are two scenes in Margarita with a Straw that illustrate this brilliantly. The first is when Laila is being carried up a flight of stairs while in her wheelchair. She’s being lifted by men she doesn’t particularly know and the entire time the audience is made very aware of the obvious discomfort writ large on her face. The second is the palpably tense scene where Laila needs to use the restroom at a male friend’s house, compelling him to assist her in undressing and dressing.
PwDs with high-support needs will regularly be in situations where their privacy may be compromised to allow their caretakers to do their jobs. I found this to be a common occurrence after my trip to a special school in Nagpur. The trustees had just purchased a specialised bus with a hydraulic lift to avoid exactly the situation Laila was in. “We wanted our girls to feel comfortable coming to school,” they said, “to be able to travel with dignity.”
Even within the act of sexual expression, privacy is compromised. PwDs often live with their families or in group residential homes, sometimes under near-constant vigilance. Planning a sexual experience may require the knowledge and sometimes even permission of residential home admins / the PwDs’ guardians.
This is further complicated when you consider that PwD couples often require assistance from their caretakers to either prepare for or carry out some/all sexual processes like positioning and using protection. This makes sex a pre-planned collective activity rather than a spontaneous private affair.
PwDs are seen by predators as easy targets. PwDs are the most vulnerable social group to sexual abuse, often in their family homes or group residential homes. Worse still, it may not be known to the PwD that what they experienced was abuse, due to the complex nature of exploitation. It is not uncommon to hear of stories where caregivers stumble upon the signs of abuse rather than being alerted to them by the PwD in question. This is especially true for non-verbals and/or PwDs with severe cognitive delays.
शादी के बाद सब ठीक हो जाएगा / Everything Will Be Alright After Marriage…
Often, families of PwDs are eager to find spouses for their children so as to transfer caretaking duties. A community member tells me that this is especially true for rural India, where people with disabilities are regularly made to marry one another, regardless of choice. They also emphasized that such disabled couples are invariably ostracized in the community.
The assumption that PwDs are the best fit for PwDs doesn’t always manifest in such explicit ways. More subtle is the general exclusion of PwDs in dating pools, and thus the rise of disability-specific dating services. Here, PwDs may find other PwDs under the assumption that there is an elevated understanding between the individuals from being members of a similarly ostracised if not the exact same minority community.
We look again to Baby from Baa Bahu Aur Baby. There’s a couple of episodes before she meets her able-bodied husband where her family members are negotiating where to go looking for a groom — a disability-specific marriage agency or an inclusive agency? The show puts across all sides of the argument beautifully, and the audience is left seeing the merits as well as demerits of aiming specifically for a PwD partner. On the one hand, why should Baby have a smaller dating pool? On the other hand, would not a PwD better understand her lived experiences through an ableist world?
While disability dating organizations themselves are doing great work, it is important to remember why they are necessary — because disabled people are excluded from mainstream dating pools. There is nothing inherently wrong with PwDs seeking to exclusively date other PwDs. What’s saddening is that this is necessitated by a culture that is yet to normalize PwDs as sexual/romantic beings and partners.
There’s a lot to talk about regarding the solutions to these different injustices. As a first step, I’d urge you to speak to the willing PwDs in your life (think harder, you know many) about their experiences or search online for blogs and other personal accounts on the subject.
Systemic change starts with individual action. The first step in disability-inclusive education is asking the community, “What do you wish I knew?”