Remaking a World That Wasn’t Built for Us
On South Asian American Disability Activism
By Harshada Rajani |
APRIL 18, 2022
I was the shining star of the predominantly Hindu, Indian American community in which I grew up in Charlotte, North Carolina. I checked every box. I was an obedient and respectful Duke Medical School-student with a handsome, desi, future-doctor boyfriend by my side. Aunties and uncles beamed at the sight of me. They asked me to talk to their kids, hoping some of my glow would rub off on them. They pestered my parents, “What did you do right?”
Then, at age twenty-three, during my second year of medical school, I had a spontaneous stroke that left me with locked-in syndrome. I was paralyzed bilaterally from head to toe and unable to speak, but I was cognitively intact. I lost my career, my love, and my secure future—everything the aunties and uncles of my community once glorified me for and everything I had learned to glorify in myself. All that was left was a wheelchair and shame.
Today, there are approximately 1.4 million Asian Americans with disabilities in the United States.1 Some of our disabilities are congenital and some are acquired; they may be physical, sensory, cognitive or another type of disability. But there’s one thing we have in common. Our perceptions of disability unfold in relation to our respective cultural norms. Ideas of beauty, normalcy, and success emerge through a complicated convergence of our family backgrounds and how we grew up, and this profoundly influences how we see ourselves and our disability. Even though there is not a single or homogenous “South Asian American community” or even an “Indian American community,” for that matter, the intersection of disability and culture has been central to my experience.
Viewing a person with a disability as inferior is referred to as ableism. When people with disabilities project that negative belief onto themselves, it’s referred to as internalized ableism. Outdated beliefs about the competency of people with disabilities, the cause of their disability, and their value in society perpetuate ableism. Some of these beliefs are so entrenched, they are thwarting progress in the disability community because they are reinforcing internalized ableism.
In every community, there’s a battle between old beliefs and new, reductive stereotypes and progressive visions, that needs to be resolved as we work toward disability inclusion and acceptance. This essay considers how South Asian American activists with disabilities and their allies are pushing back against harmful, ableist beliefs. They, like me, are using their voices to try and break through and combat longstanding stigmas against disability.
“We Are Not Less Than”
“Hi Harshada. I’m Raj uncle, Amit’s dad. Do you remember me?” asked Raj uncle as he bent down to my eye level.
My smile vanished like a forgotten dream. Everything inside me clenched up. I searched for the words, but I couldn’t find my voice. My throat felt raw. Just say yes! Or nod! Do something!
But I was stunned and a simple ‘yes’ didn’t feel like enough. My gaze fell to the floor as I waited for him to move on to a conversation with someone else. I felt like the tiniest person in the world.
I’ve known Raj uncle for twenty-five years, but after my stroke he introduces himself to me every time we meet. He’s not the only one. People in my community have treated me like a child on countless occasions, or, like Raj uncle, severely misunderstood what my disability means. They see that my body isn’t what they consider to be ‘normal’ and correlate it with assumptions about my intellect and memory. Whenever I’m at a community event or the temple, for example, strangers will come up to me and hug me, kiss me, or whisper random “God bless you’s” in my ear. Their actions disrupt the fun I’m having with my friends or family and remind me that people don’t see me as normal.
What I’m describing here as my experience is in fact widely shared. In the semi-autobiographical novel Family Life, Akhil Sharma tells the story of the Mishra family’s struggle to create a life in Queens, New York, in the late 1970s. Sharma describes how local aunties or uncles who visit the Mishra’s house first touch the feet of the nonverbal, teenage son, Birju who has sustained a severe brain injury from a diving accident, in order to acquire his blessings.2 The actions of the local aunties or uncles may be well-intentioned, but they conspicuously label Birju as an ‘other,’ as if a wheelchair or scar doesn’t do that enough already.
The profound misunderstanding and overwhelming pity over my disability, and disabilities more generally, are jarring, annoying, and dehumanizing. There’s a palpable dismissiveness in such treatment; it’s as if I’m now worthless and not even worth knowing, or that my significance starts and ends with my disability. This pity-soaked dynamic is othering and creates a hierarchy. Regardless of intentions, it leads to patronizing and isolating treatment of people with disabilities.
I am not alone in this. Cara Yar Khan, the Atlanta-based disability advocate, argues, “Our community still prescribes to the charity model or the medical model of disability and so it is this idea that because now I have a disability, my life will not be as fulfilling or as happy. Or, hope is only possible if there is a potential treatment or cure for my condition.” Her statement underlines that people with disabilities are not believed to have the same potential as able-bodied people in South Asian communities. Jigna Desai, Minneapolis-based professor of Critical Disability Studies, has come to a similar conclusion in her research, noting, “This [ableist] perspective is often based on assumptions that disabled people are less capable, less valuable, less competent, etc.”
Much of Khan’s analysis also comes from her life experience. Khan’s parents were very loving and supportive after she was diagnosed with a degenerative muscle-wasting disease at 30, but members of her extended family expected her to lower her future goals as a result of her diagnosis. In a conversation we had, Khan shared: “I was trying to tell people I’m still the same person, I have the same hopes and dreams, I have the same determination and grit, I have the same desire to fall in love one day and have a husband and maybe have children, but the fact that someone else now thought I was no longer entitled to that or I wouldn’t be able to find it, that for sure was hard.”
Why is it that the default perspective for some people is to see a person with a disability and automatically think she’s somehow 'less than'? This was even my own perspective until a friend said to me, “So what? You’re in a chair. You’re still the same person. Still smart and beautiful.” My mind was blown.
Khan came to a similar conclusion herself: “I don’t need to walk again to be a powerful advocate for my community. I don’t need to be able to raise my arms in the air to be a loving and doting daughter, you know? I don’t need to be able to shake my *ss on a dance floor to be a great friend, you know? I can still be all of those things with the impairments that my condition presents.”
People like Raj uncle and countless others haven’t taken the time to understand different disabilities or maybe just haven’t been exposed to many people with disabilities. Virali Modi, a disability rights activist based in Mumbai, India, told me that when she is outside her home in her wheelchair, individuals will congratulate her for going out. Their statements indicate just how little exposure they have to disabled persons and their experiences. Modi believes that disability visibility is key to changing people’s attitudes towards disability. She and other disability advocates are raising their voices on social media and have become popular influencers in hopes of increasing disability visibility. Modi herself has led successful campaigns to get portable ramps installed at train stations and restaurants in Mumbai to increase accessibility—a huge barrier for the disabled population.3 Modi has also dabbled in modeling and explored online dating; she’s pushing for disability inclusion in all parts of her life and the world in which we live.
Khan agrees: “Exclusion is the result of invisibility.” She says that for any community to change, we all need to see more people with disabilities out in public and at community events. Disabled South Asian Americans need to go out for Diwali or for Eid or even just to the grocery store to increase disability visibility—and they need the support, resources, and access in order to be able to do so comfortably and confidently.
“We will not stay silent”
“What’s in here?” said an unfamiliar boy from just outside my room.
Every muscle in my body tightened. I could hear several boys whispering to each other. I guessed they were about 8 or 9 years old.
“I peeked, I think it’s her,” said another.
It was the first time my parents had invited people over since my stroke. It was just two or three families for a brief puja, but I begged my parents to let me stay in my room and watch TV. I didn’t want to see anyone. I didn’t want anyone to see me. As I sat in my power wheelchair staring at the television, I wished my makeshift downstairs ‘bedroom’ had a door instead of a curtain.
“I dare you to open the curtain and look at her,” the first boy said.
“No way, you do it.” They all giggled.
I felt like a freak.
As a child, I learned that health problems were supposed to remain private and within the family. It was considered “the white way” to speak openly about anything that could be fodder for gossip in the community.4 Flaws and problems were meant to stay hidden. But how was I supposed to hide a wheelchair?
Many of us growing up in Indian American communities have learned to hide things we feel ashamed of, things that don’t fit the norm. In my case, I couldn’t hide my wheelchair, so I just tried to hide myself. It’s still an emotional roller coaster for me when I attend community events, even though it’s been thirteen years since my stroke.
Priya Ray, an Asheville-based artist, musician and founder of DIYabled, had a similar upbringing. “Everyone’s hiding this from this person, and hiding that…But that’s how it was always growing up. [My mom would tell me,] ‘Pretend like it’s not happening. Pretend like you don’t have a problem. Pretend like you’re not disabled. Pretend like I don’t have arthritis,” says Ray.
In fact, research has shown that some Asian American parents of children with disabilities don’t always feel comfortable taking their children out in public either. Another study suggests that in some families, the existence of one disabled child is thought to negatively impact the marriage prospects of the siblings, so the disabled child or disability itself is hidden. The disability is seen as genetic or contagious or, sometimes, a suitor’s family just doesn’t want their own to be caregivers all their life. In some cases, the disability or illness in question isn’t acknowledged or accepted, leading families to avoid treatment.5
In my experience, we flaunt our successes and gloss over our vulnerabilities. I don’t know if it’s because our parents want us equipped with the most attractive biodata or if the question “log kya kehenge?” (“what will people say?”) has us brainwashed, but the obsession with keeping up appearances prevents many of us from acknowledging or discussing real issues. Khan says, “[If] we don’t fit that ideal, it’s frowned upon to ‘put yourself out there’, right? To let people in to see the truth. To some extent, we want to keep this façade of perfection.” If a person feels depressed, he feels ashamed, so he doesn’t talk about it. But the shame exists in the first place because no one talks about depression. It’s a self-perpetuating shame cycle, and it just adds to the stigma.
I used to say I was sick, instead of disabled. Khan told people she had a limp, instead of a muscle-wasting disease. The family of a friend with cancer referred to it as “a little thing on her chest.” In Family Life, Birju’s mother insists on implying her son is in a temporary coma instead of acknowledging his severe brain injury. This erasure of a person’s identity can lead to an inordinate amount of shame and isolation.
Afshin Bhimani, a Mental Health Case Manager from Sacramento, told me, “Sometimes I find myself hiding my disability even from myself, like my brain tries to trick myself into believing that I’m a typical person. But that’s my internalized ableism. The stigma is so strong. My family is not even fully okay with me sharing about my life as much as I do.” In 2021, Bhimani started the website “Desi and Diseased” to give people a space to talk about what it’s like to be chronically ill and South Asian American.6 Despite her family’s misgivings, she wants to be the one to tell her own story.
After my stroke, I felt the same way. I didn’t want whispers and gossip to shape my story, so I decided to give up my shame and sit in plain sight, for all the world to see. Against everything I had learned about vulnerability and privacy, I started a blog and began freelancing for a wide range of publications.7 I was an open book. I described in detail every experience I had in the hospital, as well as every emotion and every weakness. It was raw, honest, and authentic.
Khan refuses to stay silent as well. “No society in the world when you talk about beauty or perfection or the ideal would show someone with a disability, which is a little crazy,” she says. As a result, disability has traditionally never been something people talk about in an honest way. To change this, Khan travels the world and gives candid speeches about her disability; she even broaches bold topics like relationships and disability. She says she’s happy to be “a renegade and a rebel” and shaking up the minds of people in our community by “putting herself out there.”
“Disability is not ‘karma’”
“When will I get better?” I spelled out with my eyes on my alphabet board.
No one said a word. In a small voice, one of the doctors eventually said, “We don’t know.”
I started sobbing. I hated this answer. But it was better than hearing “never,” which is what all the literature at the time said. Most literature said I would stay in this conscious but fully paralyzed and mute state until an infection got the best of me.
I looked up at my parents from my hospital bed, tears obscuring my view. They both smiled back at me and said unflinchingly, “Don’t worry, you’ll be fine. You’ll get better, just have faith.”
I don’t know if I ever managed to have faith—God and I haven’t been on speaking terms since my stroke—but they were right, I did get better. Not at all a full recovery, but my body broke out of its locked-in state.
Religion and spirituality have a significant presence in many cultures, including the predominantly Hindu, Indian American community in which I grew up. Studies show that although families in our community, broadly defined, accept medical explanations for their family member’s disability, they also hold onto what some might call “traditional beliefs.”
Faith can be a beautiful thing when it gives people strength to get through difficult times. Like in my story, faith can give people hope when there isn’t a shred to be found anywhere else. That little, defiant hope might have saved many of us from falling into a pit of inaction and depression. The family of a disabled child is sometimes able to accept the disability by seeing it as “God’s will” or a “blessing from God.” Some believe that “God will grant me the strength to handle this.”
But faith can also contribute to heartbreaking self-blame. What if I hadn’t gotten better? That little hope would not only go from looking brilliant to looking delusional, but it also would make me feel like I was responsible for my own ill fate, as if “I didn’t have enough faith.” As a student of science, I know that this can’t be farther from the truth, but not “recovering” or transcending one’s disability or ill health can feel like a personal failure: “I didn’t believe enough.” The guilt this puts on a person is debilitating and unfair.
The most harmful part of faith for many Indian Americans with disabilities, though, comes from karma, which is both a Hindu-derived concept and one that has been secularized into a general principle of cause-and-effect. Karma “represents the idea of universal justice, the belief that in the end, good will be rewarded and wrongdoing punished. Karma is an impersonal force operating to meet out consequences of actions.”8 When it comes to disability, some Indians, particularly Hindus, believe disability is a result of our karma, or a “punishment for past sins.” Thus, people hold the disabled person, or the mother of a disabled child, responsible for the disability. This is another reason why people with disabilities have so often been shunned and excluded from society. It would be one thing if outsiders just saw a person with a disability and believed it was a sign of that person’s moral failure. But this belief has become so ingrained that even some people with disabilities believe at one point or another that it’s their own fault.
Nicolas Uppal, a political activist based in Atlanta, was involved in a motorcycle accident in Beverly Hills that left him with a spinal cord injury and brain injury when he was 25. He says, “I’ve castigated myself for my injury being as a result of karma.” There’s nothing he could have done, in this life or any other, to warrant such an injury. He’s not alone. I think many people with a disability have thought at one time or another about what they might have done to “deserve” their disability.
Desai speculates that people are just trying to “make sense of atypicalities and provide a sense of causality” by blaming themselves, or searching for behavioral, moral, or karmic causes for the injury, illness, or disability. She says, “It seems to me that this creates some sense of agency that something can be done to avoid or ameliorate the situation.” Moreover, people need a reason to explain why something bad happened to someone else, so that they can feel secure that it won’t happen to them. Blaming a person with a disability for her disability is damaging and pernicious, yet widespread. Trying to undo that “bad karma” to ameliorate the situation can just lead to more false hope and self-blame.
Rhi, who is based in the UK, says she was told for years that karma caused her chronic illness. In a September 2021 Instagram post she writes, “I truly believed that I had done something so terrible, in this life or a past life, to deserve what was happening to me. I believed I was an awful person, that I was evil and tainted.” With time and therapy, she has realized she didn’t do anything to deserve her illness, and now she wants to help prevent others from feeling that way.
She ends her post with a message in all capital letters: “THIS IS NOT KARMA. THIS IS NOT A PUNISHMENT. YOU DID NOTHING TO DESERVE THIS!”
“We do not need to be fixed”
“Harsh, you know what?!” my mom said excitedly. “They held a puja for you at the temple.”
I nodded, feeling a little flutter in my stomach.
“And last week, they dedicated the katha to you. Everyone loves you and is praying for you to improve.”
The flutter in my stomach continued but it turned into a knot. I wanted to get better and needed all the good wishes I could get. I should appreciate this, shouldn’t I?
I nodded again, slowly this time. Imagining all these people feeling bad for me—I felt embarrassed.
Many of us will see a person with a disability and think, “That person needs a cure.” It’s a belief that is the basis of medicine. When I was in medical school, if a patient came in with a fever, our job was to find the right antibiotic to bring the temperature back down to normal. Simple. Sensible. Return abnormality back to normal. Cure the illness. Fix what’s broken. It’s a belief that I and many other newly disabled people have believed as well.
Before my stroke, I was the ideal young achiever. Like so many other Asian Americans raised in a society that views us as “model minorities,” I had learned to value myself in terms of my quantifiable achievements. After my stroke, I didn’t know who I was.
I was determined to fix what was broken and to erase every trace of my stroke and disability. The original Harshada was dead and gone, but I didn’t know that yet. I thought that if I worked hard enough, I could bring her back to life. I was going to fight, defy the odds and succeed, because that’s what I was taught to do. As a child I observed the celebration of spelling bee champions, valedictorians, and tech geniuses. I expected this form of success of myself and everyone around me expected it of me, too.
This pressure to get better is often internal, or sometimes it comes from family. Priya Ray says, “I try to ignore that kind of pressure, but in reality it’s so ingrained in our upbringing that it’s hard to ignore it and we put pressure on ourselves, too. Sometimes even more than the people in our lives.” In our culture, accepting a disability is sometimes seen as admitting failure.9 Thus, many Indian Americans, and South Asian Americans more generally, refuse to fully accept their disability or prognosis. It’s common for families to see a disability as temporary and something that will eventually be fixed. Research shows that parents constantly trying to find solutions to their child’s health problems can actually have adverse effects on the child’s progress. Children can feel the disappointment and frustration inherent in that “emotional over-involvement” and the resulting pressure can have psychosomatic effects.10
Here’s an example of this kind of “solutionism.” Often, walking is linked to “normalcy” and social inclusion, so it is a common benchmark of success. Parents of children with disabilities try to get their child as much rehabilitation as possible because it’s presumed that more therapy will mean success, even if the likelihood of walking is quite low.11 In addition to regular rehabilitation, Indian American families often spend time and money pursuing alternative treatments such as Ayurvedic medicine, naturopathy, homeopathy, healers, prayer and other traditional avenues with the hope of curing the disability in question.12
I used to hate it when my physical therapist would spend our session working on propelling my wheelchair. I didn’t want to accept my disability, and I didn’t even want to accommodate it. I just wanted to fix it. In Sarika D. Mehta’s collection of stories documenting the experiences of the deaf South Asian American community in Washington, DC, Zara Husain shares that her parents refused to learn sign language and encouraged her to get a cochlear implant. Her parents weren’t willing to accommodate her disability; they just wanted it to go away; they just wanted her to be “normal.”13
Such pressure can be external, too, and even come from strangers. Vyoma Raman, an undergraduate at UC Berkeley with Spinal Muscular Atrophy, recalls a time when she was approached by an elderly man at a community function, and he advised her to pray at a certain temple. Every Indian American with a visible disability has experienced some version of this encounter. Well-intentioned strangers offer their opinions on how to get better, even when they don’t know the situation. Raman adds, “I’ve been told about the benefits of Ayurvedic medicine several times, with a poorly disguised intent of steering me to fix my disability (which no herbs can prevent).”
It can come across as cavalier as well. In Family Life, after Birju’s accident, numerous strangers from the Indian American community visit and claim that they can make Birju normal. Ajay, Birju’s younger brother, says, “I did not like these ‘miracle workers.’ It seemed to me that they wanted to try their so-called cures on Birju because doing so would make them feel that they were at the center of important things.”
South Asian Americans with disabilities are pushing back and proving that they don’t need a “cure.” They, we, need a new world. Khan says, “People with disabilities are some of the most innovative and resilient because we live in a world that wasn’t built for us.” Yes, she notes, some may be focused on finding a cure for a particular situation, and there’s a place for that. But people need to know that there’s an alternate way to live your life, and that without that cure, one’s life can still be as fabulous. She says we need to stop thinking that “our value, our happiness is intrinsically connected to a treatment or cure.”
I’m somewhere in the middle of the two paths. I’m still trying to get better and stay healthy, but I know my happiness isn’t contingent on getting better. My stroke and disability are beautiful parts of my identity, and I can find my self-worth not despite them, but because of them. I see my purpose in my loving family and friends, my writing career, and my nonprofit, We Win, that tries to help others recovering from neurological injury find their way forward in our broken healthcare system.14 Because rehabilitation services are deeply underfunded by insurance companies, We Win helps individuals access physical, occupational, speech and mental health therapy. It may not be the perfect life I imagined, but it’s still pretty great.
Lata Mani, an academic who suffered a traumatic brain injury after a car accident in 1993, describes a similar recalibration of her imagined life in the immediate aftermath of her injury: “I found myself needing to rethink everything from the ground up. To give one example, for several years my life seemingly consisted of little other than breathing in and out! I had to learn to set aside judgment and shame about the ‘value’ or ‘purpose’ of my life.”15
Before Ray’s spinal cord injury at twenty-nine, her mother would pester her about her choice to become an artist and date Robert, a non-Indian musician. She wanted Ray to be an engineer and marry an Indian doctor. But after her injury, Ray could still be an artist, whereas a career in engineering might not have worked out. Robert stayed with her and supported her through her injury, and they are still together twenty-five years later. Her uncle joked that if she had had an arranged marriage with a “suitable Indian boy”, he might not have stayed, given the cultural taboo on disability. Ray says, “This idea that you have to go to college, you have to become a lawyer, doctor or engineer…then you have to marry the perfect man that has the perfect job and then you have to buy a house and have children. I think I taught my mom that isn’t always the life you have to live.”
As a community, we have a long way to go to open people’s minds, but I think we’re on the right track. The first step is to increase disability visibility. The next step is to talk about these issues within our families and broader circles. In writing these words, I seek to amplify the powerful voices of activists like Cara Yar Khan, Priya Ray, Afshin Bhimani, Rhi, Nicolas Uppal, Virali Modi, and Vyoma Raman, who are contesting outdated attitudes towards disability. In reading and sharing these words, you, too, are making that change.
1. US Census Bureau. Disability Characteristics, American Community Survey. 2019. Retrieved from https://data.census.gov/cedsci/table?q=S0201&t=Disability&tid=ACSST1Y201...
2. Sharma, Akhil. Family Life. New York, W. W. Norton & Company, 2014
3. Venugopal, Meera. “Virali Modi: The Disability Rights Activist You Should Know About.” NewsBytes, NewsBytes, 3 Mar. 2021, https://www.newsbytesapp.com/news/inspirational/what-s-disability-asks-w....
4. Elias, P. “The silence about mental health in South Asian culture is dangerous.” New Republic (2015).
5. Nguyen, Quynh, and Margaret Hughes. “Perspectives of first generation Asian American parents towards children with disabilities and their educational programs.” The Journal of Special Education Apprenticeship 2.2 (2013): 4.
6. Bhimani, Afshin. Desi and Diseased. www.desianddiseased.com. Accessed on December 13, 2021.
7. See, for example, Rajani, Harshada. “I Loved Fashion & Getting Dressed Up — Then I Had A Stroke,” Refinery 29. March 10, 2017. https://www.refinery29.com/en-us/2017/03/138726/wheelchair-fashion; “Why Do We Choose to Survive after Tragedy,” Huffington Post. May 17, 2017. https://www.huffpost.com/entry/why-do-we-choose-to-survive-after-tragedy... and “After a Stroke, I Spent 4 Months Trapped in My Own Body — Here’s What That Was Like,” She Knows. November 14, 2018. https://www.sheknows.com/health-and-wellness/articles/1142051/locked-in-...
8. Larson, Paul. “Karma.” Encyclopedia of Psychology and Religion (2020): 1318-1318.
9. Kim, Nayoung. “Asian Parents' Perceptions of Child Disability and School Contact for Services.” Diss. 2010.
10. Spiegel, Alix and Lulu Miller, hosts. “The Problem with the Solution.” Invisibilia, season 2, episode 3, NPR, 1 Jul 2016.
11. Daudji, Anisa, et al. “Perceptions of disability among south Asian immigrant mothers of children with disabilities in Canada: implications for rehabilitation service delivery.” Disability and rehabilitation 33.6 (2011): 511-521.
12. Luthra, Nidhi. “The Experience of South Asian Immigrant and Canadian Mothers of Children with a Developmental Disability: A Mixed Methods Study” (2018).
13. Mehta, Sarika D. “Deaf South Asian Americans: Zara's Story.” Sarika D. Mehta, 2 Apr. 2019, https://sarikadmehta.com/2013/07/09/deaf-south-asian-americans-zaras-story/.
14. See https://www.wewintogether.org/
15. Quoted in Subramanian, Arundhati, Women Who Wear Only Themselves (Speaking Tiger: 2021): 115.
Harshada Rajani is a young stroke survivor and freelance writer based in Charlotte, NC. She also co-founded We Win, a nonprofit dedicated to helping people recovering from neurological injuries access rehabilitation services. Read more about her story and her writing at harshadarajani.com.