Tending the Flame

Creating a community-led peer support space for neurodiversity in Bangalore, on the intersection of varied marginalities.

- Non-judgmental support space

- Equity for voices from marginalised communities to ensure fair participation

- Regular meetings to develop community

- Facilitated safe spaces to embrace each member's authentic experience

- Constant creative engagement with feedback to maintain community voice

How this came to be

The neurodiversity movement, though active in the west, is yet to find grounding here in India. I found out about my own neurodivergence from watching TV, and subsequently reading further. While it is easy to relate to a fitting diagnosis from within, I let go of steps towards a formal diagnosis early in my search for several reasons - getting a diagnosis as a female neurodivergent can be complicated because many medical practitioners don’t take masking into account, although that is slowly changing. The legal framework in India doesn’t allow for adult diagnosis of autism, for example, because it is considered a ‘developmental disorder’. If I were to get a formal diagnosis, it would have to be abroad, and the one quote I did pursue, meant that I would spend the equivalent of five months of rent on a diagnosis. This is not affordable for many, including me. Even if I were to get a formal diagnosis, India doesn’t offer the socio-economic support or mental health care facilities that make it worth getting diagnosed.

All of this meant that I am self-diagnosed as neurodivergent, without systems that support the disability that the divergence can bring in an environment designed for the neurotypical person. Fortunately for me, I found relief in my diagnosis and support in the strategies that others have used to deal with their neurotypes. I was also able to find a neurodivergent therapist who can support my needs and advocates for self-diagnosis and understanding. This benefited me immensely, especially alongside having supportive friends and family who have been responsive to my needs.

In my search for likeminded community, I happened across peer support spaces in the USA who are open to all, trusting each person’s experience to be valid. It was a blessing of the covid-19 pandemic that transferred meeting spaces to Zoom and allowed me access to spaces that are geographically on the other side of the globe. Finding a sense of belonging in unlikely community enlivened a wish in me to have similar support spaces locally in Bangalore, where there is a strong need and lack of access to mental health support defined on one’s own terms.

Additionally, India in general has a deep-seated stigma against mental heath issues, judging people seeking mental health support to be pathological, broken or weak. This is slowly changing, but there is a long way to go before mental health care is normalised. Looking at autism again, for example, a simple google search reveals that most organisations in Bangalore openly claim to “cure” autistic children and seek to “normalise” them, Some even offer electroshock therapy. In such a ghastly environment, it is crucial now, more than ever, for spaces to exist that embrace neurodivergence and offer support to people who struggle with the neurotypical paradigm.

Research has also shown a visible link between neurodivergence and trauma. At this historical moment in India, many communities are facing persecution from the majority in religion, caste and politics, notably muslims, DBA (Dalits, Bahujans and Adivasis) and people from the LGBTQ+ community. I aspire for this space to emphasise on intersectionality and uplift voices from marginalised communities.

It is essential for voices of diversity to gather and feel safe and held in community. It is my hope that this initiative can offer the seed that the community takes forward into creating a circular, democratic, peer-led support space.

Seeking support from the community

In order to move forward, I would love support from the WorldPulse community in the following ways -

- Ideas, needs and opinions from those who identify as neurodivergent. Please share what would make you feel comfortable in a support space. What would you love to see/receive in order to feel safe and held?

- Guidance from leaders already doing this work. Please offer wisdom for the next steps to set up a peer-led support space for neurodivergence. Especially the roadblocks to look out for further down the road, and ways to ease and refine the process.

- Information about similar organisations. Please share any organisations that you are part of or might know who do similar work, especially in India. It would be great to connect, collaborate and cross-pollinate.

- Information about organisations that offer funding for such ventures. Please connect me with organisations you may know who would love to support a peer-led support circle for neurodivergence in Bangalore, India. I would like to offer this circle free of cost to make it as accessible to marginalised communities as possible. Funding would support payments for design, facilitation, organisation, collaterals, zoom services etc.

- Resources. Please share any books, articles, movies or other miscellaneous resources about neurodivergence, trauma, intersectionality, facilitation, circles etc. I intend to make a separate update collating those resources so it may be of benefit to the community as well.