Chronically Brown: The Importance of Cultural Representation in Chronic Illness Communities, With Sukhjeen Kaur

Topics covered in this episode include:

• Stigmas around disability within South Asian communities.
• Sukhjeen’s personal story with rheumatoid arthritis and how that led her to form the nonprofit Chronically Brown
• Exploration of medication shaming.
• Lack of representation of people of color’s voices in online chronic illness communities.
• Discussion about how South Asian practices (like yoga, herbal remedies and turmeric) are sometimes bashed within the chronic illness community.
• Dos and Don’ts for when reacting to someone’s chronic illness or disability.
• What should medical professionals consider when treating someone of South Asian descent?
• Exploration of white privilege and microaggressions

Speaker Bios:

Sukhjeen Kaur is the Founder of Chronically Brown which aims to address the ableism in South Asian communities. Chronically Brown is a non-profit organisation dedicated to empowering South Asians with invisible & visible disability through education and support. Sukhjeen has lived with rheumatoid arthritis for 2 years.

Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and enjoyable patient education and self-management resources.

This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life.

Episode links:

• Sukhjeen Kaur links:
  • Facebook: https://www.facebook.com/Chronicallybrown
  • IG: https://www.instagram.com/chronicallybrown/
  • Twitter: @chronicbrown https://twitter.com/chronicbrown
  • Website: https://chronicallybrown.com/
• Resources and Articles mentioned in this episode:
  • South Asian culture affects people’s experiences with chronic illness.
  • Medication shaming
  • American College of Rheumatology - 2021 Photography contest for skin of color (due date - July 2021)
  • “Not everyone with a chronic illness is a skinny white woman” graphic, which was inspired by “Invalid Art”
• Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook group
• Cheryl’s Arthritis Life freebies:
  • Free Handout: Cheryl’s Master Checklist for Managing RA
  • Free Training: Arthritis Life Hack Crash Course
• Arthritis Life Program Links
  • Join the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.
  • Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.
• Cheryl’s Arthritis Life social media pages:
  • Cheryl & Arthritis Life on Instagram
  • Cheryl’s website: Arthritis Life
  • Arthritis Life Tiktok: @ArthritisLife
  • Arthritis Life Facebook Page
  • Cheryl’s Twitter: @realcc
  • Arthritis Life Youtube channel

Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Breakdown:

1:00 - Sukhjeen shares her initial difficulty adjusting to her chronic illness due to lack of representation of people of color in online communities. She shares how she learned to accept her condition after connecting with others from her cultural community.

5:30 - Sukhjeen explains how and why she formed the nonprofit Chronically Brown. She shares how she grew up in a predominantly white area and felt her cultural background was erased during her youth. The exclusion and stigmas for people of color with disabilities leads Sukhjeen to form Chronically Brown.

9:05 - What does “intersectionality” mean and how does that apply to a person of color living with a disability? What does it feel like to be excluded from both your culture and your disability community?

10:30 - Specific stigmas around disability within South Asian communities, including “What will people say?” Pressure to hide your chronic illness, not use mobility aids, “fix” or cure your illness, maintain an image of perfection and more examples.

15:00 - How Sukhjeen became comfortable being more outspoken about her experiences with disability.

20:00 - Sukhjeen explores medication shaming within South Asian communities and the chronic illness community at large.

22:00 - Exploration of how South Asian cultural treatments (like yoga or herbal remedies or turmeric) are sometimes bashed within the chronic illness community. The importance of the language we chose; “have you tried yoga” can be exclusive or derogatory towards South Asian communities.

26:45 - Exploration of the phrase “herbal medicine” and how that often signifies nonwhite practices versus “Western medicine.”

28:35 - Recognition of the emotional and energetic labor that goes into educating others about culture. Recognition that not every South Asian person wants to speak about their culture.

30:30 - Sukhjeen explains her “Dos and Don’ts” when reacting to someone’s chronic illness or disability, and what to say when you don’t know what to say. Why is it so harmful when people say things like “you just need to push through it” or “my friend tried XYZ and they are cured, you should too.”

35:15 - What does Sukhjeen want medical professionals to know about South Asian cultures and disability?

41:00 - Sukhjeen’s final message: the importance of including South Asians in all efforts around chronic illness and disability, and uplifting the voices of people of color.

44:00 - Reflection on #DisabilityTooWhite. The importance of representation of people of color’s experiences. Cheryl’s reflection as a white person about the importance of recognizing your blind spots and subtle forms of racism and biases.

46:00 - Sukhjeen’s examples of racial microaggressions when filling her medication and a pharmacist delaying her medication due to his difficulty understanding her name.

50:00 - Cheryl’s reflections on having white privilege, the importance of recognizing it and using it in a helpful way rather than taking advantage of it.

51:30 - Where to follow up with Sukhjeen.

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