Sukhjeen Kaur: 'I think it's helped me accept my diagnosis a lot more, the realisation that I'm not alone'
Illustration by Sukhjeen Kaur © Chronically Brown
Sukhjeen Kaur: ‘I think it’s helped me accept my diagnosis a lot more, the realisation that i’m not alone’
Interview by Anna Morrissey
Sukhjeen Kaur, founder of the Instagram account Chronically Brown, talks to Tummy Ache about the power of online community networks in inspiring social change.
Since March 2020, Instagram has become the bedrock of community-based activism and support networks. With people stuck at home during the pandemic, the insularity of life has forced individuals to look outside of themselves and engage with others on the platform more deeply. Users are recorded to be moving away from curated highlight reels and edited selfies, and are instead engaging in grass roots activism, “circumventing the limitations of traditional media,” and educating each other. When diagnosed with Rheumatoid Arthritis at twenty-one, Kaur felt completely isolated from communities that had previously accepted her. Since beginning Chronically Brown at the beginning of the pandemic, she has discovered the unifying potential of social media spaces, creating a community of disabled South Asians who are dedicated to de-stabilising the taboo of disability within their cultural community and encouraging more of an “inclusion.”
“I went from being extremely healthy, to couldn’t leave my bed, or make food, or anything else.” The sudden physical limitations placed upon Sukhjeen were isolating in themselves, dealing with rheumatoid arthritis at such a young age. Yet, she also found that she was having to cope with another form of ostracization, stemming from a cultural stigma that she had never fully comprehended before. “Ableism is everywhere in society, but so many South Asians are dealing with ableism in their own homes.” The ableist rhetoric within South Asian communities creates a cultural fear towards those with disabilities, “I’ve had comments from family friends who’ve said they’ve avoided coming over to the house because they don’t want to say something to upset me.” This fear stems from “mis-information,” Sukhjeen explains. “They’ve already avoided so many disabled people and chronically ill people, they don’t know how to act.”
“Ableism is everywhere in society, but so many South Asians are dealing with ableism in their own homes.”
The cultural silencing of disability in South Asian communities meant that, for Sukhjeen, she felt completely alone in her experience of disability as a South Asian woman. “I could never find anyone who looked like me, who had the same condition, and who I could relate to on that kind of level.” On turning to social media to document her experience living with a new diagnosis, other disabled South Asians with similar experiences of conflict between their disability and culture, began to come out of the woodwork. “I think it’s helped me accept my diagnosis a lot more, the realisation that I’m not alone.” This personal experience of the power of representation allowed Sukhjeen to reject the position of ‘other’ she had been made to feel as a twenty-one-year-old South Asian woman with arthritis. Representation is invaluable and Sukhjeen has created a space that fosters this for her community. Chronically Brown is now a non-profit organisation focussed on dispelling mis-information surrounding disability within South Asian communities. An online space “dedicated to empowering South Asians with invisible and visible disability through education and support,” as stated in its Instagram bio.
“I think it’s helped me accept my diagnosis a lot more, the realisation that I’m not alone.”
This move from personal polemic to educational platform was not a seamless transition. “There’s actually a saying that is said about taboo topics,” the South Asian maxim ‘Log Kya Kahenge,’ which translates to ‘what will people say?!’ is often used to maintain a status quo through shame. “That was literally going through my head, I don’t know what they’re going to say and what they’re going to think,” Sukhjeen comments, in reference to the family members following her account. “There have been instances with my family where they’ve unfollowed me… they don’t want to listen to it, and they don’t want to recognise their behaviours in the things I’m speaking about.” The continued dedication to disability representation and visibility within the community, even after familial backlash, is undeniably radical. “It’s really hard to get people to share their stories. I think mainly because it’s so stigmatised, people are either not used to talking about their conditions or they’ve been told to be quiet by their family members.” Chronically Brown is a radical expression of disability awareness and re-education within a community that is reluctant to change their perspectives. Sukhjeen is harness the power of personal storytelling, paired with educational resources, “to get more people included in the community because, it’s almost as if you have to fit this specific criterion to actually be included, when the criteria shouldn’t even be there in the first place.”
The importance of Chronically Brown as a community that supports and validates the experiences of disabled and/or chronically ill South Asians extends outside of South Asian communities. #DisabilityTooWhite is the inaugural statement in the Chronically Brown Instagram bio, signalling the need for inclusive disabled spaces. “I dealt with a lot of racism growing up, so an erasure of my background was normal for me.” When Sukhjeen attempted to seek support from disability networks online, she was hurt, but not surprised by the white-washed narrative she was presented with. “I was part of a Facebook group during the start of my diagnosis, a lot of white women were in the group, and they spoke about wellness and herbal remedies. There was one point when they were talking about turmeric capsules, and I was like ‘No, it’s way better to have it fresh,’” Sukhjeen describes how it is “normal practice” in South Asian households to have fresh turmeric as an anti-inflammatory remedy. “As soon as I put a comment, it wasn’t even a post, I got kicked out of the group. I think that was the point when I was like, wow so I have to pretend that I’m not brown to be in these communities.”
Through the Chronically Brown community, Sukhjeen has been able to validate her experiences of racial bias within medical spaces. She recounts how doctors often treated her with suspicion. “They kept saying I didn’t need painkillers. I thought, I have to exaggerate a bit more, take my crutch when I didn’t need it, then I was given painkillers. After that they caught on to the fact that I was exaggerating and then they thought I was making it up all together, but I wasn’t making it up, I was in pain and I just needed them to listen to me.” When Sukhjeen posted about this online, she was amazed by the amount of other South Asians who had been treated similarly. “It was like a ripple effect – that’s when I realised this was a bigger problem, it’s just we haven’t actually had it written down and confirmed. You just think it’s in your head otherwise.” “I was exaggerating in response to what [the doctors] were doing to me,” Sukhjeen explains, “but because I was exaggerating I made myself think I was making it up in my head, and that I was just doing this for attention.” It wasn’t until others came forward with their similar experiences that Sukhjeen realised this was an endemic problem that was racially motivated. “There is a term medical professionals use against older South Asian women, ‘Mrs Bibi syndrome,’ and it’s actually been coined by medical professionals to undermine older South Asian women, as they are dismissed as overreacting and therefore aren’t listened to.” The platform Sukhjeen has created is that confirmation that many disabled South Asians need, that they aren’t making up the pain, or the micro-aggressions, or the medical gaslighting. Within a cultural community that silences honest conversations around disability, endemic problems can become misinterpreted as personal – Chronically Brown allows the community to identify patterns, raise awareness and offer support.
“There is a term medical professionals use against older South Asian women, ‘Mrs Bibi syndrome,’ and it’s actually been coined by medical professionals to undermine older South Asian women, as they are dismissed as overreacting and therefore aren’t listened to.”
Illustration by Sukhjeen Kaur © Chronically Brown