‘Skin Stories’: The courage in carrying on

“When researchers and journalists interview us, they ask us, ‘What issues are you facing in society?’ and we have to perform our pain over and over again. No one asks, ‘What holds you together every day when people try to stare you out of existence’,” writes Upasana Agarwal, organiser of the Kolkata-based queer feminist art space Amra Odbhuth, in a personal essay published in Skin Stories: Essays on Sexuality, Disability and Gender.

Skin Stories is a landmark contribution to the growing discourse around sexuality, gender and disability. Edited by Shreya Ila Anasuya, who works with the Mumbai-based non-profit organisation Point of View (POV), the essays first appeared in a digital publication of the same name before they were woven together into this volume.

Skin Stories: Essays on Sexuality, Disability & Gender; Shreya Ila Anasuya (ed.); Point of View; Non-fiction; ₹750

POV seeks to equip “women and girls with disabilities across India to break societal barriers and start seeing themselves as sexual beings who are entitled to pleasure, desire, and intimacy (like anyone else).” This mandate is gloriously articulated throughout the anthology, which delights in challenging assumptions and breaking stereotypes.

Each section is a story cluster built around an overarching theme such as mind, body, romance, friendship, sex, work, violence, marriage, self, children, discrimination and myths. The 46 stories in the anthology hold the kind of power that can only come from lived experience, which forces one to be creative and resourceful in a world that is made to alienate people who are disabled, neurodiverse and non-normative in other ways. The writers featured in the book are not looking to be held up as inspirational icons; rather, they merely want to be heard and seen on their own terms, without being reduced to a symbol or a cause. For instance, in her essay, Christina Thomas Dhanaraj, who is the co-founder of the Dalit History Month project, writes about the enormous toll caste takes on the mental health of Dalit women who are not only mocked for benefiting from reservation quotas but also systematically marginalised, ill-treated and passed up for job promotions. “This, in turn, forces us to overcompensate, mandating us to be ‘high-functioning’ all the time, everywhere — at our workplaces, our movements and our art. We are told to be better and to do better, in the supposition that it is us who’s lacking, who’s not good enough,” she writes.

Her essay highlights why it is important for therapists to understand that mental distress is deeply connected to the socio-political structures that individuals have to navigate. It is rare to come across mental health professionals who are willing to examine their own caste privilege and unpack how it shapes the therapeutic space they build with clients.

Hyderabad-based disability rights researcher and trainer Srinidhi Raghavan writes about living with fibromyalgia, a disorder characterised by widespread musculoskeletal pain, and the frustrating experience of having doctors dismiss her chronic aches. She writes, “I grew up in a house where being ‘tough’ was very important. So when I didn’t feel tough, I pretended to be. Now when I need support or help, I think of myself as weak and disgusting. This ‘toughness’ is a disease. It’s hard for me to accept that sometimes I cannot wash my own clothes or cook my own food.”

Her essay is a provocative meditation on how pain is normalised in patriarchal societies, where women are trained to expand the limits of how much they can bear, and applauded if they can do it without complaining. This denies people the agency to recognise they are vulnerable and seek support.

Skin Stories suggests that storytelling itself is an act of agency for people who want to combat the stigma associated with disability, mental health issues, chronic pain and prolonged illness. The stories are told in ways that defy a singular script for recovery or closure. They celebrate what works for people — medication, travel, humour, therapy music, support groups, art making — in the context of their own lives, without setting up any standards for what normalcy would look like.

Bengaluru-based law studentParvathy Gopakumar writes in her essay, “I have given up on making conscious efforts to prove how chill I am about living with an amputation[...]The hollow part of my prosthetic arm is where I hoard chocolate at times, and I love applying nail polish on the silicon fingernails these days, because why not?” On the other hand, Priyangee Guha, a lawyer dealing with vicarious trauma after working on cases of sexual violence, had to quit her job. It was a hard decision to make. “I came to the realisation that I could not do justice to my work, and I could not represent my clients zealously and passionately if I was not healthy — physically and mentally,” she writes.

The stories would not be half as impactful without the uplifting artwork by Alia Sinha, Upasana Agarwal and Naresh Suna, as well as the book design by Sherna Dastur. Visual appeal is a priority for many book buyers, and thoughtfully written books often lose out on readers because they look text-heavy, dense and forbidding. Let’s hope this book is able to change that.

Chintan Girish Modi is a Mumbai-based writer, educator and researcher