The unspoken experiences of queer disabled folx accessing medical care in India
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It was a fairly hot October afternoon in Bengaluru, and Arka, a trans-masculine person in their mid-20s living with mixed connective tissue disease (MCTD) and rheumatoid arthritis, was on their way back from a long-due appointment with their rheumatologist. A series of events in interaction with the doctor led to a moment of acute breakdown in communication between them, Arka told me. Arka said they were in tears, while the doctor snapped at them, saying, “If you’re going to behave like this, then don’t ever come back to me.” As we will learn later in the story, Arka’s doctor shut them down for attempting to advocate for their medical history. Arka's real name, and those of other people in this story have been changed to protect their identities.
Arka found themselves unable to talk. Just about an hour earlier, they had been preparing themselves for several weeks for the day of this appointment. As a highly sought-after specialist in the city, there was a 3-4 week waiting period to get an appointment with him.
While waiting for the appointment, Arka found the hospital to be particularly crowded that day. They started experiencing sensory overwhelm. The constant chatter, beeps of printers, and the sanitized smell that hangs around hospitals added to their sensory issues. The pointed stares of strangers as they seemingly pass silent judgment on your choice of clothes and use of disability aids, can be overwhelming for a disabled, genderqueer person.
In such situations, it can be extremely difficult for some people to find the words to articulate and explain the nuances of one’s experience. This experience has been termed as selective mutism by the American Psychiatric Association, and is widely referred to as ‘situational mutism’ by neurodivergent researchers themselves.
Long studied in young children, it has been described as the absence of speech in select situations in which the child is expected to speak, even though a physical impediment to speech is not evident. In such a situation, the child experiences high levels of anxiety and is therefore unable to articulate themselves. They particularly display sensitivity to verbal interactions with others.
While many children who experience such moments grow out of it, children socialized as girls or those learning a second language because of migrating to a different place have been found to display mutism more often. Furthermore, those who have experienced bullying as a direct result of experiencing mutism might struggle with it well into adulthood. Such disabilities may include being autistic or having ADHD wherein lowered vagal tone, which can affect cardiovascular function and leads to emotional and attentional dysregulation. This, in turn, results in a highly anxious experience that renders them non-verbal. Over the long run, this damages the vagus nerve and can even result in difficulty speaking, loss of voice, difficulty swallowing, and even loss of gag reflex. This reflects how social identities can socially disable-ize people.
In the days leading up to the appointment, Arka, had been experiencing a flare-up. “I had been showing symptoms of my autoimmune condition since I was 7 years old,” said Arka. As someone with caste privilege [as a person raised in a Brahmin family in Bengaluru for the most part], and a father who has health insurance, I feel like a lot of barriers in the medical field that might exist for others were not there for me - like, finding the right kind of specialists for my specific, rare auto-immune condition. In some ways, I have it easier than most people,” explained Arka.
Like most people with chronic illnesses and autoimmune conditions, Arka’s symptoms, too, have changed over the course of their life and they turn to doctors to help manage them, especially during flare-ups.
“In my previous flare-up, I had experienced some new symptoms that I was finding difficult to handle. I was having trouble doing work and was sleeping for 12-16 hours everyday. When I asked for advice on how I could support my body through this, the doctor [the specialist they had consulted] remarked that my pain threshold had gone down, and that my psychiatric medication was making me sleep so much.”
Arka tried to explain to their rheumatologist that they had consulted with their psychiatrist prior to the appointment, who had assured them that while such symptoms do show up during the early days following the prescription, since Arka was way past that time window, their medications weren’t causing the reaction. Arka told me, “[The specialist] did not like that I was talking about another doctor [and seemed to perceive it as a defiance of his own expertise]. I had my hands in my lap and he rapped them sharply to make me shut up. It’s not like he hit me hard, but I don’t like to be touched when I am already experiencing a sensory overload. My guards went up and I started crying. Suddenly, the lights felt too bright and like the people around me were talking too much.” Before Arka knew it, the interaction seemed to spiral out of their control. They got up and rushed out of the doctor’s office.
Arka’s experience portrays how experiencing situational mutism as an adult in the context of accessing medical care, can affect the quality of care received.
For years, I had felt myself shutting down in the gynaecologist’s office, unable to answer their questions. Memories of a doctor forcefully conducting a physical examination on a teenaged-me without prior discussion about what it would entail, triggering intense body dysphoria in the process, would rise up every time as if to convince me that others would not understand how I experience my own body.
Jan, an autistic person with ADHD in their early 30s, emphasized on the importance of having doctor-patient relationships built over a period of time. “If you’re going to a ‘family doctor’, they will listen to you, because [they perceive their reputation as being at stake within the community] and expect to be held accountable. That if there are any violations of consent [such as with respect to touch or sharing private medical information], they know that they can’t easily get away with it.”
Queer persons, especially those who live with disabilities and chronic conditions, often find the need to build long-term patient-doctor relationships, so as to feel a sense of trust to be able to open up about one’s identity and medical history over regular consultation sessions spanning across lengthy periods of times.
Arka’s negative experience was despite a 6 year medical relationship with their doctor.
“I was making the effort to communicate [my experiences] to him, and he knows that I usually experience sensory overload at hospitals,” Arka said wistfully. They were visibly hurt over the interaction with their former rheumatologist, which they described as hostile.
It was a fairly hot October afternoon in Bengaluru, and Arka, a trans-masculine person in their mid-20s living with mixed connective tissue disease (MCTD) and rheumatoid arthritis, was on their way back from a long-due appointment with their rheumatologist. A series of events in interaction with the doctor led to a moment of acute breakdown in communication between them, Arka told me. Arka said they were in tears, while the doctor snapped at them, saying, “If you’re going to behave like this, then don’t ever come back to me.” As we will learn later in the story, Arka’s doctor shut them down for attempting to advocate for their medical history. Arka's real name, and those of other people in this story have been changed to protect their identities.
Arka found themselves unable to talk. Just about an hour earlier, they had been preparing themselves for several weeks for the day of this appointment. As a highly sought-after specialist in the city, there was a 3-4 week waiting period to get an appointment with him.
While waiting for the appointment, Arka found the hospital to be particularly crowded that day. They started experiencing sensory overwhelm. The constant chatter, beeps of printers, and the sanitized smell that hangs around hospitals added to their sensory issues. The pointed stares of strangers as they seemingly pass silent judgment on your choice of clothes and use of disability aids, can be overwhelming for a disabled, genderqueer person.
In such situations, it can be extremely difficult for some people to find the words to articulate and explain the nuances of one’s experience. This experience has been termed as selective mutism by the American Psychiatric Association, and is widely referred to as ‘situational mutism’ by neurodivergent researchers themselves.
Long studied in young children, it has been described as the absence of speech in select situations in which the child is expected to speak, even though a physical impediment to speech is not evident. In such a situation, the child experiences high levels of anxiety and is therefore unable to articulate themselves. They particularly display sensitivity to verbal interactions with others.
While many children who experience such moments grow out of it, children socialized as girls or those learning a second language because of migrating to a different place have been found to display mutism more often. Furthermore, those who have experienced bullying as a direct result of experiencing mutism might struggle with it well into adulthood. Such disabilities may include being autistic or having ADHD wherein lowered vagal tone, which can affect cardiovascular function and leads to emotional and attentional dysregulation. This, in turn, results in a highly anxious experience that renders them non-verbal. Over the long run, this damages the vagus nerve and can even result in difficulty speaking, loss of voice, difficulty swallowing, and even loss of gag reflex. This reflects how social identities can socially disable-ize people.
In the days leading up to the appointment, Arka, had been experiencing a flare-up. “I had been showing symptoms of my autoimmune condition since I was 7 years old,” said Arka. As someone with caste privilege [as a person raised in a Brahmin family in Bengaluru for the most part], and a father who has health insurance, I feel like a lot of barriers in the medical field that might exist for others were not there for me - like, finding the right kind of specialists for my specific, rare auto-immune condition. In some ways, I have it easier than most people,” explained Arka.
Like most people with chronic illnesses and autoimmune conditions, Arka’s symptoms, too, have changed over the course of their life and they turn to doctors to help manage them, especially during flare-ups.
“In my previous flare-up, I had experienced some new symptoms that I was finding difficult to handle. I was having trouble doing work and was sleeping for 12-16 hours everyday. When I asked for advice on how I could support my body through this, the doctor [the specialist they had consulted] remarked that my pain threshold had gone down, and that my psychiatric medication was making me sleep so much.”
Arka tried to explain to their rheumatologist that they had consulted with their psychiatrist prior to the appointment, who had assured them that while such symptoms do show up during the early days following the prescription, since Arka was way past that time window, their medications weren’t causing the reaction. Arka told me, “[The specialist] did not like that I was talking about another doctor [and seemed to perceive it as a defiance of his own expertise]. I had my hands in my lap and he rapped them sharply to make me shut up. It’s not like he hit me hard, but I don’t like to be touched when I am already experiencing a sensory overload. My guards went up and I started crying. Suddenly, the lights felt too bright and like the people around me were talking too much.” Before Arka knew it, the interaction seemed to spiral out of their control. They got up and rushed out of the doctor’s office.
Arka’s experience portrays how experiencing situational mutism as an adult in the context of accessing medical care, can affect the quality of care received.
For years, I had felt myself shutting down in the gynaecologist’s office, unable to answer their questions. Memories of a doctor forcefully conducting a physical examination on a teenaged-me without prior discussion about what it would entail, triggering intense body dysphoria in the process, would rise up every time as if to convince me that others would not understand how I experience my own body.
Jan, an autistic person with ADHD in their early 30s, emphasized on the importance of having doctor-patient relationships built over a period of time. “If you’re going to a ‘family doctor’, they will listen to you, because [they perceive their reputation as being at stake within the community] and expect to be held accountable. That if there are any violations of consent [such as with respect to touch or sharing private medical information], they know that they can’t easily get away with it.”
Queer persons, especially those who live with disabilities and chronic conditions, often find the need to build long-term patient-doctor relationships, so as to feel a sense of trust to be able to open up about one’s identity and medical history over regular consultation sessions spanning across lengthy periods of times.
Arka’s negative experience was despite a 6 year medical relationship with their doctor.
“I was making the effort to communicate [my experiences] to him, and he knows that I usually experience sensory overload at hospitals,” Arka said wistfully. They were visibly hurt over the interaction with their former rheumatologist, which they described as hostile.
As a Dalit person, Jan shared that ze had never met a Dalit doctor and this meant most healthcare providers were not able to relate to zir’s lived experiences when offering medical advice. “I expect a Dalit doctor to have the cultural knowledge [about the experience of caste in society] to know how to interact with me, and this will make me feel safe and taken care of [when seeking their services].”
Across the world, identities systemically marginalized by gender, race, caste, sexuality, and other markers, have been excluded from being represented in healthcare. This is often due to subtle reasons and hoops that they are often made to jump through, such as internship requirements and regulatory guidelines that gatekeep training opportunities and professional access under the guise of maintaining ‘educational merit’ in medical institutions. “Just the other day, I was reading that most medical students skip the mandatory government posting and instead find a way to pay the ₹10 lakh fine to get out of it,” Jan remarked, observing how class hierarchies often form along the faultlines of caste.
This cements the social model of disability, which puts forward the theory that disability is a creation of society, i.e., a person is not born disabled, but is disable-ized by lack of understanding, accommodation, and community offered to them in private and public spaces. In turn, marginalization due to gender, caste, class, race, mental illness, and neurodivergence can all be disable-izing experiences.
Dating around for doctors whilst in medical need is not only an irksome affair, but often an expensive one as well. “In Mumbai, I went to a doctor who was charging ₹2000 per consultation, and she constantly referred to me as ‘beta’ in a very condescending tone. I found it very annoying, and she wasn’t helpful [with her medical advice] either,” recounted Jan, when asked about their experiences with doctors.
As a queer person, it also means putting oneself out there, making ourselves vulnerable to the judgments of a system that positions itself as an expert of our bodies, and dismisses our own lived experience and preferred ways of navigating through the world. This often means a lack of empathy for our complex experiences of alienation, exclusion, and trauma that becomes compounded by its intersection with caste, mental illness, and disability, among others.
Jan was diagnosed with anxiety when ze were 17, and also had an eating disorder. “[Around the same time], I was suicidal and ended up cutting myself, and had to be taken to the hospital. I was bleeding profusely, but since this was a suicide-related case, [the doctors] wouldn’t start medical treatment immediately until the police arrived.”
In India, Section 309 of the Indian Penal Code continues to criminalize an attempt to suicide, watering the seeds of social stigma around suicidality. According to the Act, behaviors of suicidality (otherwise known as ‘attempt to suicide’) would attract fines and potential imprisonment – a bizarre and damaging response to a person in medical crisis. Despite its decriminalisation by the Mental Healthcare Act, 2017, section 309 of the Indian Penal remained a legal provision. These contradictory terms create a lot of confusion in treatment of supporting suicide victims.
“The psychiatrist at the hospital told my mother that I was on drugs. However, given my anxiety and eating disorder (a high occurrence among transgender and gender-diverse folx when compared to the cis-gendered population), I was behaving in a way that [seemed odd and uncommunicative to them],” Jan shared, when asked about the doctors’ response during this time. At that point, ze was on anxiety medication and without them, couldn’t make an assessment about how ze was feeling or why ze was feeling that way. Jan said, “My competence to consent was very blurry. However, outside of therapists and psychiatrists, the medical fraternity is not aware about how to handle this aspect of our health with sensitivity. [Interacting with them and explaining myself] feels labour-intensive, especially for people who are from a caste and class background such as mine.”
Jan’s experience shows how ableism manifests as a stigma around caste, queerness, and disability among healthcare providers, inhibiting their ability to understand layered experiences of persons at these intersections. Many people continue to refer to disabilities like autism and ADHD as ‘invisible’. However, nothing can be farther from the truth. Such disabilities present themselves in tangible ways - such as situational mutism, where our speech abilities are hampered - affecting our material reality and physical health.
Sandi is a therapist in her mid-20s living in Mumbai with cerebral palsy (CP). She is also a survivor of cancer, which she was diagnosed with in her teens. “My disability has been mistaken for incompetence a lot of times,” she reflected. “The only reason I was being consulted in my medical decisions [during my chemotherapy] was because people perceived my vocabulary as “proof” of intellectual competence and presence of mind. Being able to speak is the only way that people can believe that my mind is sound. This bothers me immensely because it makes me wonder what would happen if I was one of those whose speech was affected,” she remarked, referring to spastic cerebral palsy (CP), a commonly-occurring form of CP, which renders a person non-verbal due to nervous system disorder and muscle weakness.
During the treatment of such patients, it becomes important to explore Augmentative and Alternative Communication (AAC) tools and approaches. It can be useful to use tools like drawing and art-based therapy, communication boards, AAC apps and speech-generating devices (such as the one popularized by Stephen Hawking) to communicate with people of varying ages, differing speech abilities (or those experiencing situational mutism due to various factors), including those who may be used to communicating in a different tongue altogether.
Gestures, eye gaze, body language, and wordless sounds are all commonly used ways to communicate that do not involve the spoken word. “There are people who may be in pain, but because of their disability, they may not know how to explain it, except maybe through tears. In such a situation, it may not be possible to get direct [written or verbal consent from that person],” explained Sandi, while talking about the different scenarios that need to be considered.
“In an ideal scenario, unless it is an extreme case of intellectual impediment where the person is in comatose or in a state of psychosis where they are hallucinating, you would still want to have a conversation with them in a way that is understandable and feels safe to them. Their comprehension of the message is key to them making a decision, so you may want to explain in a way that they will understand, and their input must be sought regarding how they would like to proceed with the treatment. If they can understand even a part of what is going on, it is important to ask and not assume that they are incompetent to make that decision [for themselves],” Sandi offered, when asked about how care-providers can communicate with a disabled person who may be non-verbal for any of the myriad reasons during a crucial moment of medical care.
As a genderqueer disabled person myself, I dream of a world where healthcare didn’t feel so daunting and inaccessible. Where I didn’t have to put on armor against microaggressions such as misgendering or heteronormative, ableist assumptions about how my body works, even as I feel the dire need for medical attention and support from trained professionals. The answer doesn’t probably lie in yet another medical startup, but a systemic overhaul in how we study and understand the body, and who is considered an expert on it. It requires acknowledging deep-seated social biases, and returning to a modality that promotes healing and ease of living, instead of “betterment.” Now, how do I find the words to tell my doctor all this in a 30-minute consultation slot?
This story was produced in collaboration with Revival Disability India
Tejaswi Subramanian (they/she) is a Brown, neurodivergent, and queer researcher and journalist. They are a member of Revival Disability Collective.
Shruti Sunderraman (she/her) is a journalist, writer, editor and strategist who splits her time between Bombay and Bangalore. She’s worked in culture, health, gender and science across publications over the last 10 years.
Jose (she/they) is a non-binary illustrator from Kerala whose work highlights personal stories marked by gender, body experiences and their south-Indian heritage. While not lost in their sketchbook, they can be found devouring all things camp and horror.
Nu Misra (They/he) is the founder of Revival Disability India.
