Nidhi Goyal is a Mumbai-based disability rights activist and stand-up comedian. She is the founder and director of an NGO called Rising Flame. She sits on several boards and committees including that of national Human Rights Commission India, FICCI, UN Women New York, and Dutch Ministry project Voice. She is the youngest and the first disabled president of Association for Women’s Rights in Development, a global nonprofit. She is the co-author of sexualityanddisability.org for the non-profit Point of View where she led the Program on sexuality and disability for several years and spearheaded the training on sexuality, gender, disability and violence. Three of her essays appear in the recently published book Skin Stories (2019), which contains personal essays about gender, sexuality and disability.
In this interview, she speaks about comedy, activism, and the often unseen connections between disability and mental health. She opens up about her own experience of living with depression, healing through self-care practices, and breaking the stereotypes associated with blindness. Read on, and get to know her.
Chintan Girish Modi: You are celebrated as ‘India’s first blind female stand-up comedian’. What does this mean to you personally beyond a tagline that others use to describe you? How do you feel when you are up on stage making people laugh?
I love being on stage. My presence as a strong, opinionated, disabled woman shakes up all the assumptions audiences bring with them, and this has contributed immensely to my success as a stand-up comedian. I am happy when I make people uncomfortable and also make them laugh at the same time. They are not used to seeing someone embodying all the different identities that come together in me, so I wait for them to recover from the shock. I do not mind the tagline at all. I like to own it and open up the space for more female comedians and disabled comedians to get on stage and shine.
Chintan Girish Modi: In your essay titled ‘As a blind woman, I belong to a community of friendship, love and care’, published in Skin Stories, you write, “My favourite part of belonging to this community is what I call blind humour, that a non-disabled person will unfortunately rarely be able to comprehend or enjoy!” What helped you work around this challenge while preparing for the stage?
My humour in the blind community is quite different from what I perform on stage. These are jokes that you are allowed to laugh at only when you are from the community. Let me give you an example. Recently, I had invited some of my blind friends home to watch a film. When I was picking up the glasses, one of the guys was pulling my leg and troubling me. I walked towards him, kicked his foot, and said, “I am so sorry, I am blind.” This is below-the-belt humour, only for insiders. We would not tolerate this from a non-disabled or sighted person.
Chintan Girish Modi: I noticed that you use the expression ‘non-disabled’ instead of the more commonly used word ‘able-bodied’. Could you please talk a bit about what makes you choose one over the other?
The shift in language is meant to emphasize my worldview and perspective as a disabled person. If I am with a sighted person during a power cut, I say, “Don’t worry. Hold my hand, I will guide you.” When I become the reference point, the other person is non-disabled. If the able-bodied person is regarded as the norm, I become the ‘disabled’ other. Though I believe that language can produce a change in mindset, I am not obsessive about it. The inclusion of disabled people in mainstream spaces is more important to me than merely adopting inclusive vocabulary but alienating us in practical terms.
Chintan Girish Modi: What does humour do for your mental health as someone who has to navigate the ignorance and the insensitivity of ableist social and professional spaces quite regularly?
My general outlook towards life helps me cope. There are times when laughter is my response to something horrible that has happened because it is just so unbelievable. On other occasions, I feel quite aggravated. These might be extreme reactions but this is how things work for me. What I find hilarious feeds into my comedy, and what makes me angry feeds into my activism. However, being a stand-up comedian is not a substitute for active self-care practices that are needed to ensure mental well-being.
Chintan Girish Modi: What are some of these practices?
I am a private person, so I do not feel like going to a therapist to talk about the issues that bother me. I prefer being vulnerable with a small circle of people who are my personal support system. Apart from that, I have a regular meditation practice and blocks of time carved out for yoga and physiotherapy. If I do need a therapist at some point of time, I will not hesitate to look for one. That said, finding a good therapist is a bit like finding a good life partner. They are difficult to come by.
Chintan Girish Modi: In your essay titled ‘I live with blindness, but it is not the hardest thing I have to deal with’, published in Skin Stories, you write, “Yes, I don’t look blind, I don’t look ill, but what if you just trusted me instead of trusting your own estimation.” How do you feel when people project these ideas on to you, and how do you respond to them?
It is frustrating to be with people who refuse to acknowledge that I am blind. They say, “Are you sure? Can’t you see even a little bit?” They want me to perform my disability in a way that they can comprehend. Why would I pretend to be a blind person? I am not even a creepy man who is desperate to hold their hand. There are people who have suggested that I should wear dark glasses to indicate that I am indeed blind. They are stuck in popular imagery, and cannot handle the fact that a blind person can be exuberant. I was chirpy before I lost my sight, and I continue to be that way. I tell them, “Black is so boring. I prefer pink and purple.” I want to be treated as an equal, not as someone in need of sympathy.
Chintan Girish Modi: In the same essay, you say, “If I push myself too much or don’t sleep enough, my digestive system collapses… It dulls my brain, worsens my memory, and shortens my attention span. It is challenging when you especially depend on these faculties as a blind person.” To what extent do disability rights forums make space to listen to concerns like these? What would make you feel more heard and supported?
I think that disability rights forums are not yet ready for a conversation about chronic illness and pain. They understand that illness can be disabling in many cases but they engage with it only when it comes from a space they already understand. If something is not a disability, they do not consider it their domain. You would expect that someone experiencing one kind of marginalisation might readily empathise with someone experiencing another kind but that does not happen automatically. It takes awareness, time and effort.
Chintan Girish Modi: Would you mind talking a bit about the effects of blindness on mental health? What are some of these effects that you wish there was more conversation about in feminist and disability rights networks?
We, at Rising Flame, are working on a podcast that will address the subject of disability and mental health. A lot of mental health professionals do not understand what constant discrimination does to a person in terms of social life, romantic pursuits and sexual engagement. They typically look at everything through a non-disabled, heteronormative lens, which does not explain the lived realities of people on the margins.
Even in feminist and disability rights networks, there is a tremendous lack of awareness about how disability impacts mental health, not just of the disabled person but their whole family. Most of the empowered, outgoing and assertive disabled people in these spaces have a strong support system of parents, siblings and grandparents. These family members absorb half of the trauma. They often do not get invited to social events because the hosts are worried that the disabled person will come along and be a source of embarrassment at a wedding, party or celebration.
Chintan Girish Modi: How can the Rights of Persons with Disabilities Act (2016) and the Mental Healthcare Act (2017) help fill this gap in terms of discourse, advocacy as well as services?
We give a lot of importance to legal reforms but social behaviours do not change overnight. How many non-disabled people will let their kids play with a child using a wheelchair? How many of them have met a person with a psycho-social disability, and not called them mad? How patient are they with someone who needs simpler instructions and repeated explanations? How conscious are they about the mobility challenges that come from elements of architecture and design? The society ranks individuals on the basis of their perceived worth, and disabled people are often not treated as fully human.
Chintan Girish Modi: In your essay titled ‘What My Depression Taught Me As A Disability Rights Activist’ for feminisminindia.com, you have written about using medication to take care of your mental health. Even people who are usually open to seeing a psychotherapist seem to stigmatise medication. What might be the reason behind this?
You are right. Depression can make people feel powerless, so they are afraid to talk about it. If there is no stigma around going to an orthopaedic doctor, why should there be any stigma associated with seeing a psychiatrist or a gynaecologist? You feel unwell, you need help, you see a doctor. That’s all there is to it. I felt that medication would work for me, so I pursued that line of treatment. My regular Ayurvedic doctor is someone I trust a lot, and he gave me some lovely calming medicines. My sister too is a doctor, and she helped me plan out a routine that was perfect for my needs.
Chintan Girish Modi: A lot of your recent work has been around the intersection of disability and sexuality. Could you talk about what led you to explore this, and how you have been going about it?
With Point of View, it was a real joy to build the Sexuality and Disability programme ground up. I must admit that I entered with a lot of naivete but I eventually figured out what I really wanted to do. There are very few disabled women speaking about gender, sexuality and violence at this time in India. And this is challenging work because the backlash is huge. With Rising Flame, our focus on consent has been largely shaped by the #MeToo movement. The voices of disabled women have been missing in that discourse, and we want to make up for that absence by consciously developing a vocabulary around consent in the disability rights sector.
When you are disabled, you need a caregiver, and the consent is often assumed. The agency of the disabled person is not acknowledged, and they become vulnerable to sexual abuse. We have been conducting a series of workshops called ‘Na Mein Na Hai’ to sensitize people on this topic. We are also running a campaign called ‘Dil Vil Pyaar Vyaar’ to publish personal narratives on love, intimacy, relationships and disability.
Chintan Girish Modi: In your essay titled ‘The love story that wasn’t’, published in Skin Stories, you write, “It is hard for me to forget my first lesson in rejection, not because the man in question didn’t like me but because assumptions about my disability superseded everything else.” Why is the burden of fighting these assumptions placed on people with disabilities rather than on allies?
A lot of people who consider themselves allies do not want to take on responsibility. They only want to feel good about themselves while all the labour is done by the disabled people. They do not realise that people with disabilities have hardly any negotiating power in an ableist society. Accessibility guidelines for designing physical spaces as well as digital spaces are widely available but those who are in charge of decision-making pay no heed to them. They sit up and take notice only if disabled people file petitions or complaints. We have to advocate for ourselves all the time. It is really annoying.
Chintan Girish Modi: How easy or difficult is it for blind people in India to access mental health services when they are nursing a broken heart or dealing with everyday microaggressions in families and workplaces?
Finding a therapist who comes from a non-ableist lens, and who understands the access barriers that disabled people face, is quite rare. The economics of getting professional support is also something that needs to be addressed. Not many can afford it because they already spend a significant amount of money on creating accessibility in their life given the absence of public infrastructure. Their families are already quite stretched in terms of money, so expenditure on mental health is considered a luxury. A lot of mental health support comes from within the community itself.
Chintan Girish Modi: If the disability rights movement, the queer rights movement, and the Dalit rights movement in India began to work more closely with each other, what gains do you imagine for each of them?
If we all began to work together, we would set a precedent for inclusion that the whole world would be forced to learn from. Right now, there is homophobia in the disability rights movement, casteism in the queer rights movement, ableism in the Dalit rights movement, and so on. We will have to address the structural inequalities in our own movements; that is a precondition for building progressive alliances.
Chintan Girish Modi is a writer, educator and researcher who loves hugging trees, contemplating the teachings of the Buddha, and working towards a queer affirmative world sustained by poetry.