Digital Kinship
Disabled and/or chronically ill South Asian Americans on finding community
Disabled and/or chronically ill South Asian Americans on finding community
Interviews: Nureena Faruqi | Artwork: Lohitha Kethu
In 2017, I began to self-identify as disabled. I lived with chronic pain for many years. It took expanding my understanding of disability (both visible and invisible) and connecting with other disabled and chronically ill folks to embrace this moniker. Many of these connections were made through the internet.
Disabled and/or chronically ill individuals often engage in acts of reimagining. Our needs exist out of society’s expectations. We reimagine the constructs of time and productivity. Our social lives are different, including how we connect with each other. Virtual space has saved many chronically ill and disabled individuals’ lives. We bond with one another at our most isolated or most ill. Virtual spaces bridge the physical distances. People who live in rural areas, in different countries, or who are immunocompromised and are at higher risk for contracting COVID can find community. Virtual spaces enable disabled and/or chronically ill folks to feel less alone.
Many may view virtual spaces as cold or devoid of authentic connection, but for many of us, they are embodied—filled with care, love, and understanding. This can show up as voice notes left on a day when one is too tired to type, watching shows together online, Facetime calls, Facebook groups, watching disabled creators on TikTok, exchanging memes about chronic illness on Instagram, etc.
Being from the South Asian diaspora adds a whole extra layer of complexity. Disability and illness, at least within my experience and from observing others, are often significantly internalized within our communities. It’s usually ignored, dismissed, hidden, or seen as a failure. Many of us have grown up with guardians who either try to find an immediate cure for us, or who don’t understand the full limitations that can come with one’s disability. Some relatives may advise us not to talk about our disabilities because of how others may perceive us. We also witness our elders and guardians hiding illness and disability because of fear and not wanting to show weakness. Often, this can be to the detriment of their health. While this denial of disability and illness by our loved ones is a result of a survival mechanism to protect us: it is a tactic that ultimately feeds into a larger narrative of ableism.
My hope with this project and these oral histories is not only to allow others to bear witness to these often unheard stories, but also to show that these histories are multifaceted. While these stories have many overlaps, each experience and journey is unique. While this project cannot capture the full breadth of the disabled experience, it does provide a window into how navigating a world set up for abled people is challenging. This project offers an expansive perspective on what building community and finding solidarity can look like.
Sara Naveed
“So I think that specially like, after I started my blog, it opened me up to like an entire new world of amazing people out there that I never would have had the chance of getting to know otherwise…And we've shared so many life experiences and things that are so similar about us and created these friendships that I don't think I could create with anyone in my own life that already exists because they don't know what it's like to live with a chronic illness.”
A.K.
“I think it's important when especially spaces that are like a part of who you are, you know, not just something like you're into, but, you know, something that's like a core part of who your being is, it's important that you when you're in those spaces, you can see yourself in them.”
Anonymous
“Because like, it's not a wheelchair accessible venue, who I am having to like, either get Ubers or like try to get there on foot using public transit which, ‘ow!’ And then I enter there's usually not enough seating, ‘ow!’”
Swati Shastry
“And I thought that was a really rare thing for an eighty-year-old Indian grandmother to say about illness and disability and it kind of gives me hope in a way that heroes of our generation, like, really don't.”
Rupa Valdez
“And that was the first time I thought about that, and about us about thinking about disability as a positive identity.”
Ashna Ali
“There is a really large and complex story taking place that can't be reduced to a set of diagnoses, some immediate meds and then you know, that's the story. It's a holistic, long approach of care that is extremely difficult and very hard to do while balancing the daily obligations of living under late capitalism in the United States.”
Saif
“They didn't take it seriously at all. And I think it was, in large part, because of shame. Right? You don't want to have a chronic condition or you know, that no one can pronounce. And you don't want people to know about that, I think is what I got... that’s very clearly was the impression I got from my parents as a child.”
A note from Nureena Faruqi
The following collection of oral histories and this project as a whole has been an actual labor of love. I’m ever grateful to:
- My advisory board: Priya, Mel and Noor for their insight, guidance, and assistance with image descriptions and feedback.
- My interviewees: whose stories I am so honored to witness and who showed up unapologetically as themselves as we navigated capacity and access. I often worked on this project from bed, editing and conducting remote interviews and often interviewees did the same.
- Lohitha Kethu, whose incredible artwork is featured in this exhibit.
- Volunteer transcriptionists: Maarya, Tanya, Raina, and Deepa, who worked to make these interviews more accessible. (Transcriptions for the archive forthcoming.)
- The SAADA team, who gave me the opportunity, tools, and guidance.
Nureena Faruqi (she/her) is a writer, artist, and caregiver advocate from North Carolina. She is an alum of VONA (Voices of our Nations Foundation) and Kearny Street Workshop's Interdisciplinary Writer's Lab (IWL). She has had work recently featured in IWL's anthology chapbook, Into the Country of Our Kitchen, Triangle Poetry Twenty-Twenty One and has a forthcoming essay in the Offing. Nureena’s project will revolve around how disabled/chronically ill South Asian Americans have had to create communities via virtual space: transcending tactile physical geographical space. She will document the connections, stories, and reimaginings that occur through these virtual exchanges.
The Archival Creators Fellowship Program is made possible with support from The Institute of Museum & Library Services.
The Archival Creators Fellowship Program is made possible with support from The Institute of Museum & Library Services.