Skin Stories launched in August 2017, as a digital publication focusing on first-person narratives by people with disabilities. Its origins were in an unnamed blog, part of the Sexuality and Disability programme at Point of View.

After over a year of publishing our essays — during which we won two awards, were featured in workshops, conferences, festivals, and talks, widely republished on mainstream and alternative media, and used as resources by non-profits and university classrooms — we launched our second season in June 2019.

Our second season featured our signature personal essays, but also expanded the scope of Skin Stories to reportage and commentary about disability.

Here’s looking back at what we published online in 2019.

In our #DisabilityIn mini-series, four essays looked at the intersection of disability with one major cultural or political arena. My own essay looked at how mainstream English language media represents disability. Payal Dhar looked at how disability is represented in children’s literature. Akriti Paracer analysed disability in political discourse, and Madhavi Shivaprasad reported on stand-up comedians addressing disability in their work.

Akshita Nagpal reported on Deaf culture in Delhi, while Riddhi Dastidar looked at problems with implementing the new mental healthcare act in India, especially around institutionalisation.

Dr Nandini Murali looked at the devastating impact of stigma surrounding suicide in an essay about her own experience in the wake of her husband’s death by suicide. Amit Dhar talked about living as a queer and disabled person, and how these intersecting identities have impacted his experience, especially in the workplace. Niluka Gunawardena wrote about prosthetics, and the politics and possibilities of a cyborg world.

Debojit Dutta talked about his experience with therapy, and the socio-political contexts which mental healthcare professionals must take into account. Archismita Choudhury wrote about surviving domestic violence, and how trauma continues to impact her relationship with her co-survivor — her mother.

We also published a comic by Tanika Godbole on living with social anxiety, and panels questioning abled norms, illustrated by Val Resh (Reshma Valliappan), first seen at CREA’s reconference 2019.

The second post included text by Janet Price, Niluka Gunawardena, Nidhi Goyal, Rupsa Mallik, and Resh herself — all part of the working group for the disability track at the conference.

In December, we were delighted to launch the Skin Stories book– an anthology of our work featuring the work of thirty-five writers and three artists. Read more about the launch, held at Title Waves Bookstore in Mumbai on World Human Rights Day, here.

In the coming year we will be taking the book to more cities, as well as organisations, collectives and individuals who can use it in their own disability and gender justice work. Please check back with us for more details on where the next few offline events around the book will be held.

For those of you who have asked, Skin Stories online submissions are closed for now as we focus on sharing what we have already published – and taking the book to a wider audience.

A very happy new year from all of us at Skin Stories, and happy reading!

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A year in Skin Stories: 2019 was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

Image description

Panel 1

A graphic representation of a person conjoined to a skull sporting flowers. The skull speaks to the person through a speech bubble that reads, ‘Knew who I was this morning. But I’ve changed a few times since then.’

The two figures are conjoined at the bottom to wheels. Text on the left of the panel reads, ‘At what point did you realize you are abled?’

Panel 2

A comic representation of the Alice in Wonderland caterpillar sitting on a wheelchair on a mushroom throne while smoking a pipe. It is asking, ‘Who are you?’ to the outline of a figure holding an umbrella on the right.

There are flowers, petals, and heart signs drawn across the panel. Text above the art reads, ‘How do you cope with not standing out in a crowd?’

Panel 3

The Alice in Wonderland rabbit dressed in a suit and carrying a pocket watch points towards a stage curtain and asks a figure to the right, ‘Don’t just do something, stand there!’ The figure to the right — Madhatter dressed in jester clothes, carrying a key, thinks to self, ‘What’s the hatter with me?’

Text above the art reads, ‘Does it worry you that abled speech and behavior are stigmatized as boring and routine?’

Panel 4

On the right is the Alice in Wonderland queen wearing a regal gown and carrying a card with a heart drawn on it. She points to the head of a figure situated on the left of the panel and screams, ‘Off with his head!’ portrayed using a speech bubble and electric bolt and exclamation marks drawn around it.

The figure on the left has its head inside a glass container. It says, ‘How do you deal with the pressure of constantly appearing sane?’

Panel 5

Text:

REFLECTIONS ON AN ABLED NORM

We aspire to an elusive ‘Abled norm’ — an assumed uniformity of fitness, independence, autonomy and rationality. This is reflected in the way bodies are read and represented.

These questions are a way to challenge our deeply held beliefs. What if the society we live in is based on Disability as the universal norm? What if those who claim to be Abled had to respond to biases that the Disabled norm creates towards them?

We invite you to open your mind to a deeply personal encounter with Disability in its myriad forms. Disability calls on us to reach deep within and look beyond the myth of independence and possessive individualism to see the inter-dependence that enables life and living.

Art by Reshma Valliappan (Val Resh), who is ‘The Schizophrenist’: ‘I practice schizophrenistry — the art of turning multiple realities into words, pictures, and actions without any social constraints to enable those with lesser realities an access into mine.’ (re-quoted from Todd Murphy)

Text by Janet Price, Niluka Gunawardena, Nidhi Goyal, Rupsa Mallik and Reshma Valliappan (the working group for the disability track at reconference 2019).

Panel design by Sherna Dastur.

Original source: Illustrated panels; disability curated space. CREA reconference 2019. The curated space included art, performance, live graffiti, films and conversations.

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Through the Looking Glass: Questioning Dis/Ability was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

‘He called today because he couldn’t remember what year it was.’ Sonam Luthra* is talking about Kabir Chadha*, an inpatient at VIMHANS — Delhi’s leading private mental healthcare institution. Chaddha lives with schizophrenia. His family uses institutionalisation to ‘outsource his existence,’ says Luthra, who was both his partner and sole caregiver for years, before burning out.

Having moved out of the city for work, she visits monthly while figuring a ‘better set-up’ for him near her. ‘He’s family,’ she says. Chadha is too ill to speak with me himself, so my conversations take place over a month with Luthra. When we first speak in September 2019, it’s been two months since he was admitted.

In 2017, the Mental Healthcare Act (MHCA) was passed. It aimed to bring Indian standards of mental healthcare in greater alignment with the United Nations Convention on the Rights of Persons with Disabilities (CRPD) which India ratified over ten years ago.

The CRPD binds India to certain standards — like the right of persons with disabilities to dignity, to live independently and in their community. This includes persons with psychosocial disabilities — or ‘persons with mental illness’ in the words of the MHCA.

While the MHCA should prevent human rights violations, implementation of its various provisions — including setting up crucial bodies responsible for enforcement, and ending forced institutionalisation — has been slow and troubled. Further, as activists like Amba Salelkar have pointed out, the MHCA itself contains worrying aspects.

Chaddha’s typical day at VIMHANS looks like this: He wakes up when he wants, is given medication and canteen-breakfast. He paces the room, sleeps some more, eats lunch, sleeps, loses track of time. A doctor or nurse checks in. He does not leave his room. His family — Luthra tells me, wealthy and unwilling to grapple with that kind of ‘problem’ — have hired an attendant to accompany him.

Recurring institutionalisation means that Chaddha has given up. At his family home he’s slipped into alcoholism. Luthra says, ‘His last two times at VIMHANS he’s been like “…if you’re going to make me do things, you’re going to have to make me do them.”’

As it turns out, not only can mental health establishments ‘make’ people do things, under the MHCA it’s completely legal. Further, even admissions like Chaddha’s — against his will — are regularly not recorded as involuntary.

Salelkar says, ‘If you speak to people who work in mental health a large number of admissions are shown to be “voluntary”. Someone is brought to the place and they are kind of “convinced”, for lack of a better term, to get admitted. This is perhaps dubious but cuts out a lot of red tape. Supported admissions [ordered by a court or other statutory body for homeless persons or overruling the will of the person if a case is established by family] form a minority of admissions in many institutions.’

The CRPD prohibits deprivation of liberty merely because of disability (Article 14), and mandates that support measures uphold the best possible determination of the person’s ‘will and preference’ (Article 12).

The MHCA seemingly upholds this. It specifies that treatment of patients admitted to institutions must have informed consent. However this depends on what kind of patient you are. Under the Act there are two kinds of admissions to a mental health establishment:

1. Independent admission (meaning voluntary, self-initiated) and

2. Supported admission (meaning not quite voluntary; initiated by caregiver or family in a crisis)

The MHCA does not use the words ‘voluntary’ or ‘involuntary’. Instead, the distinction between ‘independent’ and ‘supported’ admissions hinges on whether the person is considered to have ‘capacity’ upon assessment by a mental health professional.

Someone can be involuntarily institutionalised as a supported admission if they have attempted or are at risk of harming themselves or someone else or if they seem unable to care for themselves to a degree that puts them at risk of harm. Supported admission must also be the ‘least restrictive care option possible’, enforced only if the person requires ‘very high support from the caregiver.’

Chaddha, who ticks all these boxes, can be legally admitted against his will.

Conversations with several people admitted to mental health establishments around when the MHCA came into force (29 May 2018), showed a strange blurring between independent and supported admissions.

Swati Mukherjee*, a Delhi-based academic, lives with atypical schizophrenia. In April 2018 while working in the US, she experienced her first psychotic episode. Telling no one and carrying just her phone and passport, she boarded a flight to Bangalore. Once there, she lived ‘between hotels and the streets’ for nearly a week before police picked her up. On the aegis of her parents, she was taken to NIMHANS, the premier public institution for mental healthcare.

Her regular psychiatrist there asked if she’d consider staying in the facilities for a few days. Because he asked, she agreed. He told her it’d be seven to ten days. She stayed a month.

‘NIMHANS is a good place. It wasn’t some superbly oppressive atmosphere,’ she says. ‘Except I wonder if I could have been discharged sooner. I wasn’t violent — so there wasn’t any reason for me to be in there so long.’

Under the MHCA, supported admissions are limited to 30 days, if the patient no longer meets admission criteria. Independent patients must be discharged immediately upon request.

Although Mukherjee was institutionalised right before the MHCA became legally binding, things haven’t changed drastically since.

In October 2018, a terrible fight with her girlfriend triggered a breakdown for Durga Mathur* and she ‘resorted to self harm for the first time’. This frightened Mathur, who lives with bipolar II. She decided she needed inpatient care. To comply with VIMHANS’s usual policy requiring an accompanying relative stay, her father took leave from work.

‘I thought I’m still in control,’ she says. ‘I picked the place, sought help, decided the doctor and the time I’d go.’ When staff attempted to confiscate her phone, she resisted, realising many patients had personal items taken away. ‘Earphones could be risky but why take away my link to the outside world?’

After her first night, Mathur moved to a private room in the psychiatry ward on the low-risk first floor. Here, she found patients moved around and there was a strict timetable of mandatory activities.

‘It was irritating because the activities were very childish, like paper-folding and word puzzles. And whenever staff saw me with a visiting friend, they’d ask where my father was,’ she says.

Mathur’s stay lasted two weeks. ‘I had intended a week but after five days, I kept asking my psychiatrist when I could leave,’ she says. It took more convincing and three days of her father insisting, till she was allowed to fill paperwork voluntarily terminating treatment. This was in direct violation of the law governing the discharge of independent patients.

Mathur recalls a girl from small-town Bihar, who had been admitted five months before her for bipolar I. ‘Her mother kept asking the staff, doctors, even the art teacher, “When will this end?” And they’d always brush it off like abhi nahi (not yet)’.

There was another reason behind Mathur’s desire to leave: ‘On the 5th day, one of the staff kept a bill on my dad’s table and it was like a lakh!’ Mukherjee’s stay at NIMHANS (a public hospital) cost her Rs. 27,000.

The MHCA has two novel provisions — Advance Directive (AD) and Nominated Representative (NR).

Advance Directives are put in place to specify what sort of care someone would want or not want in a scenario where they are judged to lack capacity. The Nominated Representative is someone chosen to take decisions on their behalf.

Significantly, under the MHCA, the onus of presenting the AD to medical professionals is on the patient/caregiver, as is the onus of reporting violations. This fails to acknowledge serious power and knowledge imbalances.

‘There has been no serious attempt [by the Government] to publicise the rights-based provisions in the law or to enable registration of Advance Directives [by official bodies],’ says Salelkar.

Unsurprisingly then, Mathur, Mukherjee and Chaddha were unaware. At no point during admission were they informed about the MHCA including their rights as patients like the right to legal aid, or to know grounds for admission.

Further, the MHCA creates certain exceptions. If a medical professional/caregiver desires not to follow an AD or NR, they can apply to the district Mental Health Review Board to alter or cancel it. In case of emergency, ADs do not apply at all.

‘What can be construed as emergency?’ asks Jhilmil Breckenridge, mental health activist and co-founder of Bhor Foundation. ‘In India, one can just say yeh meri wife hai (this is my wife), she is mad, and it’s their word against hers. Families will say tumhari bhalai ke liye hai (it’s for your own good).’

A 2014 Human Rights Watch report on abuses inflicted on women in mental institutions across India bears her out.

The Mental Health Review Board (MHRB) is the body where people can appeal if their rights have been violated, and where ADs and NRs are registered. Along with the State Mental Health Authority (SMHA), it drives implementation of the MHCA.

‘These district boards are the biggest protectors of rights in mental health,’ says Dr Soumitra Pathare, one of the architects of the MHCA. In Delhi, the MHRB has not yet been constituted. This is because one of the primary duties of the new SMHA is to set it up and that hasn’t been constituted either.

The MHCA mandates all state governments to constitute the SMHA within nine months of assent from the President (7 April 2017). It’s safe to say that it has been over nine months.*

If you spend some time in a public mental health institution, you’re reminded of something: the lower down you go on the socioeconomic ladder, the more limited is your access to information and resources.

On a Saturday evening, IHBAS’s Emergency wing is buzzing with people. Daughters, single mothers and brothers have brought family members based on word of mouth. Some traveled from other states. Everyone falls in the lower-middle class or lower demographic.

‘We need to ask why do families go for institutionalisation?’ says Dr. Chitra Venkateswaran, the Clinical Director at Mehac Foundation in Kerala. ‘All don’t do it to be hostile or abandon family members. [But] there is no good alternative!’

Mehac provides long-term community-care and home-visits. Their multidisciplinary team partners with people in the community like a Panchayat or NGO. ‘If there were facilities like daycare homes or residential programs comprehensively integrated with other systems, you’d have less institutionalisation,’ Dr. Venkateswaran says.

Deinstitutionalisation is essential to uphold the CRPD. Strikingly, it’s the one issue on which there is consensus among all psychiatrists, activists and lawyers I speak to.

Dr. Nimesh Desai, Director at IHBAS is emphatic that all mental disorders, however severe, can be managed through outpatient services. ‘The past 4 years here have seen increasing success with at least prevention of institutionalisation,’ he says. Proof: the 1% admission rate and 2–3 week average duration of stay.

‘There is no reason for custodial institutions!’ he insists.

Even after reforms, the top-down custodial model of ‘treating’ the mentally ill as opposed to ‘caring’ for them as partners persists. IHBAS itself is a model public institution, built in place of Delhi’s Shahdara Mental Asylum. A small block preserves Shahdara’s ruins: narrow cage-like cells with rusting grills, cobwebs, darkness, silence.

In contrast, IHBAS looks like a university campus with vast green grounds and brick buildings. The wards are clean and swept. The group activity room has a quote of the day: Just because you are struggling doesn’t mean you are failing. Keep fighting.

Can fighting be enough? Where do people with psychosocial disabilities go after deinstitutionalisation and who will be their community? What do they do for a living? How then would they be protected from discrimination?

‘Without programmes that work with people to address socio-economic issues, we’re just sending them back to the place where they’ve been pushed into a corner,’ Salelkar says.

Val Resh, ‘schizophrenist’ and founder of the Red Door Project makes similar points. In case of persons with schizophrenia, by the time you get beyond unhelpful treatment or stigma, she says, you’re already behind on a career or being self-sufficient — which impacts your self-worth.

On World Mental Health Day, she’s inundated with interview requests. ‘Is there not another schizophrenic people can contact?’ she asks. ‘That really speaks to what the situation is in reality.’

After Shahdara was razed, 42 ‘inmates’ stayed on at IHBAS. Part of the country’s historical backlog in mental institutions, they had nowhere else to go. Two years ago, they shifted to Saksham, Delhi’s model long-stay home. Here, 23 women and 15 men, all over 60 live just off the IHBAS campus. When I visit, the men are watching TV and the women are catching the evening breeze in the courtyard.

The MHCA directs the government to provide adequate facilities to homeless persons with mental illness in the form of longstay and halfway homes. There is a dire shortage of such facilities and Dr. Desai believes this is the crucial ‘next block’ that must be fixed.

Overall in 2019, not only is involuntary admission still a practice, the public remains largely unaware of rights-based provisions in the MHCA and unequipped to protect themselves. There is a dire need to scale up rights-based and community care models to assist people in mental health crisis situations — particularly when poor or homeless.

No one I spoke with wanted to ever be admitted to an institution again. All reported feeling lack of control and information regarding how long they would stay, money constraints and a deep loneliness.

In 2019, mental health is on our lips, screens and advertisements more than ever. It’s not even close to enough.

*Names changed to protect privacy

**Note: The Delhi government put out notice seeking nominations for formation of the new SMHA only as of September 2019. In the interim, the old SMHA has been functioning as both SMHA and MHRB.

Riddhi Dastidar is a queer Delhi-based poet and journalist. She is a postgraduate student of MA Gender Studies at Ambedkar University Delhi, working on ‘severe’ mental illness, ontology and discourse in contemporary India. She lives with OCD. You can follow her @gaachburi.

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Even under India’s new mental healthcare act, institutionalisation is still a problem was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

The room I grew up in has changed a lot in the five years since I left my home in Guwahati. The ceiling fan doesn’t work any more, the bed has luggage strewn all over it. The curtains are different — with mundane-looking yellow and blue stripes on them, instead of slightly creepy cartoons. Only my bookshelf has remained the same, each useless thing — expired lip gloss, perfume I received on my sixteenth birthday, empty bottles of foundation — preserved like a relic.

I reach for a particular book. I haven’t opened it in a while. It’s a compilation of short stories by Enid Blyton, and as problematic as I’ve known her to be in my adult years, she was a solace to me while I was growing up. I open the omnibus to check if I remember my history correctly. I do. Half of it was torn into two by my father to hurt me, when he realised that I had gotten too used to his blows to cry.

When I look back, I remember how this violence shaped our lives every day, especially after sunset.

Your whole day is spent walking on eggshells, trying as much as possible to ward off the inevitable point at which he will crack.

The crack is something you live in perennial fear of — this fear is undefined, and looms large. You live with it everyday, knowing that it may shatter at any moment. Your father has to shout at somebody every night to get some sleep, and if he fails to find somebody else, he will find you.

When I was younger, my mum sent me to singing lessons. I didn’t really want to sing, but I was a child, and felt compelled to go. I went for a while, and even performed at a few small events in the neighbourhood. I didn’t keep up with the lessons, and after a while I forgot about them.

A couple of years later, one night, my father called me into my parents’ bedroom after a shouting match they’d had. He told me that I was a terrible singer, that I should never sing, that he was ashamed I’d even thought I could sing in public. I was completely bewildered. And my mother was silent throughout this exchange, as she was through many others like it.

‘It seems like it was so long ago. I can hardly believe we went through it!’ she says at dinner one night, during one of my visits. She wants me to nod, to agree with her. To say, ‘Yes, it was so long ago, I can hardly remember it.’ But I do. If I concentrate for a second, it comes back exactly as it always was — the bewilderment and the terror I felt as a child as I heard them screaming at each other. Him, drunk and bullying her; her, frightened but pushing back. I remember how much I wanted it to be over.

It did finally get over when I was nineteen, one night when things came to a head and my mother and I had to walk out of home — I was barefoot — at 1 am.

My father had thrown a full water bottle at me, which missed my head by an inch and shattered into the wall. He had seized my mother’s phone and smashed it on the floor.

This was the end of two years of failed negotiations between my parents, during which my mother — I really must say — tried everything. Everything — from going to his estranged (also toxic) family to taking him to addiction specialists to recover from his alcoholism. She also forced me to come back home, for I had escaped into my college hostel, where I could keep the violence at bay.

Back then, she had really believed that he could ‘recover’. But how can you force someone to? They must want to, of their own volition. I had suggested he get counselling. Sometimes, I still think about it — if addiction wasn’t surrounded by stigma, if therapy was something everyone could access without judgment, would he have gone to meetings? To appointments? Would he have challenged the many ways in which he was suffering himself?

My mother and I survived him together. We understand each other, veterans of a war that took place inside the four walls of our home. When we encounter violence around us, we look at each other with an understanding of how intimately it can affect lives, relationships, mental health. The fear is visceral, years later, and we understand it in each other. We are two survivors reaching out to each other. Yes, I understand what you’re feeling.

Yet, sometimes we couldn’t be further apart in how we respond to this journey we’re on together. I want to go to therapy, but she’d rather calm her anxiety with medication. She’s unwilling to go through therapy again, maybe because it was such a colossal failure with my father.

And there’s the other crucial difference. My mother talks about those years as if they are long gone. I can’t.

She worries about the cases in court that are still pending, she frets over the house — she is still reeling from the economic violence that was inflicted on her. I, on the other hand, am stuck in gruesome recollections of my childhood helplessness.

Ten days after he hurled a bottle at me and smashed my mother’s phone, my father tried to break open the lock to our house in a violent rage. (We were safe, watching from a neighbour’s house.) After this, she got a collapsible gate installed.

For the first couple of years after he tried to break in, she locked it religiously, every night. Now even though she doesn’t lock it, she makes it a point to close it every night. In the beginning, this would frustrate me. What was the point? But I realised it to be a ritual that gives her the peace of mind she needs to sleep at night, symbolic protection that wasn’t available to her when she most needed it. If she had the collapsible gate back then, she wouldn’t have needed to call the police. She didn’t want to.

When I think of that night, I remember how afraid and helpless I felt. But I remember feeling even more helpless being in my room, hearing my parents shout, waiting for my father to barge into my room, where I’d be forced to get up. Be shouted at. Beaten. My mum in the other room, probably catching a breath.

Most of the time, she didn’t care enough to stop him. This was the sacrifice that was needed to keep their marriage together, for society’s sake, for my sake — for the sake of my education, and keeping us out of financial need — as she explains to me now. Yet some things matter more than money — safety, security, well-being.

My relationship with the house itself is ambivalent. But when I come home now, my mother and I no longer have to whisper, or keep the TV turned low. It is safe to laugh, or even fight. We don’t walk on eggshells, or live in constant fear of the crack. It feels like home.

My mother cannot understand why I keep going back to how she behaved while the violence was ongoing, and the ways in which she became complicit in it. To her, this should be water under the bridge.

She cannot understand the part of me that blames her for standing by while I was being made the scapegoat in a conflict between adults — an insight that came to me from sessions with my school counselor.

I couldn’t understand how the fights between my parents inevitably boiled down to severe violence against me. As the most powerless one in our nuclear family of three, there was nobody I could turn towards. There’s a part of me that still resents her for this.

She accepts her share of the blame, and apologises. But are apologies enough? Can they soothe the child’s fear that I still feel? The openness I need for this hasn’t come yet; I am still healing.

Still, there is a bridge. It’s not what you would expect it to look like, but it’s there all the same — mediated by phone calls when we are apart, and dinner conversations when we’re together. It is a figurative holding of hands, through the most mundane things we need to do for each other. Are you okay? How are you feeling? Do you need money? What happened at court today? We’re stumbling, but we’re plodding through.

As time goes on, there’s hope for forgiveness and meeting each other halfway on the issues that still evade us. For moving through our traumas together and being there for each other, in ways we could not before.

There is no map for this, and any path we take will be created by our being on it. My hope is to light a lantern on the way.

Archismita Choudhury was born and brought up in Guwahati, and has a special place in her heart for the riverbank. Dreaming, reading, drinking tea and petting cats are all good ways to spend the day. She tweets @archismita.

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Still healing: A daughter’s view of domestic violence that I survived with my mother was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

In a classroom among the many in a three-storey Noida building, 27-year-old Shweta Goyal teaches nearly 40 pupils, aged between their late-teens and early twenties. There’s no spoken word as Goyal teaches what she herself learnt only last year — Indian Sign Language (ISL). Her learning of ISL was also at the same institution, the Noida Deaf Society (NDS). ISL is a language of hand movements and gestures, and is the primary language for persons with hearing and speaking disabilities.

A person with deafness herself, Goyal moved to this Delhi suburb in 2018 to learn signing. Her friends, specifically in online communities, catalysed this decision. Goyal eventually picked a teaching job here, rather than using her fashion designing diploma done in her home city of Haryana’s Panipat.

As a child, she would commute for two hours every day to go to school in the state’s Rohtak district.

At Kripal Badhir School, a school for deaf persons, her teachers — none of whom were themselves deaf — did not teach in ISL. Goyal managed school by reading text on the blackboard and from teachers’ lip movements. She tells me all this through Manish Shukla, an NDS staffer, who interprets my spoken words and Goyal’s manual communication in ISL. ‘Explanation was difficult at school,’ Goyal says.

In September 2018, Nipun Malhotra, a disability rights activist who lives with a locomotor disability, petitioned the Delhi High Court to make Indian Sign Language India’s twenty-third official language. This entails preserving and promoting ISL like other official languages in this linguistically organised Union of India.

ISL is essential for communication for over 71 lakh Indians (that’s nearly as much as the population of Hong Kong), according to the Census of 2011. ‘It’s such a shame, right, that we just have close to 800 ISL interpreters in the entire country?’ asks Malhotra. The number of certified ISL interpreters is even lower, at 300, as per the Indian Sign Language and Research Training Centre (ISLRTC), a government institution set up in 2015 in Delhi to promote learning of ISL. ‘If you look at any foreign language in India, it would have thousands of interpreters as against ISL, that’s an Indian language.’

This thought wasn’t the only trigger for Malhotra’s petition.

Malhotra’s interactions with friends and colleagues from the deaf community, and with companies and institutions gave him insights into the challenges faced by the community. ‘When I took a workshop for Delhi Police personnel, most of them sadly didn’t even know about Indian Sign Language,’ he says.

Dr Alim Chandani, a deaf rights activist who was born with deafness and who founded Access Mantra, a resource centre for deaf persons in India, agrees. ‘Making sign language official will provide a positive transformation to deaf education by pushing the teachers to learn and teach in sign language.’

According to him, barely any of the 350 deaf schools in India use a bilingual approach — that is, teaching in sign language as well as English.
‘I had grown up in a mainstreamed environment and until I went to college in the USA at the age of 21, where I met over 2,000 deaf persons who were using sign language, I was never confident or comfortable in expressing [myself],’ Dr Chandani says over text message. ‘From then on, I embraced my identity with confidence and was able to achieve a PhD.’ His PhD dissertation focused on the feasibility of managing deaf programmes in higher education institutions in India.

One of Goyal’s students, 19-year-old Jyoti Makhija, also found that her private school in Vikas Puri had no ISL-trained teachers or interpreters. She and her friends invented a personalised sign language to communicate — a common practice among persons with hearing disability to whom language is denied.

‘I teach my parents and sibling what I learn here and now we’re able to converse a bit,’ Makhija says of her first go at learning ISL, that started only in May 2018.

She commutes 42 kilometres each way between her home in Delhi’s Tihar Village and NDS. She points to the wall opposite to her to tell me what signing has taught her. Five words in multiple colours are painted on this wall — dedication, responsibility, education, attitude, motivation. She beams when I turn back to her after reading them.

In 2017, a video of an American infant called Charlotte Keane — who was born with a condition called bilateral congenital profound hearing loss — reacting to hearing her mother’s voice for the first time, went viral.

Prior to that video, Keane had been provided hearing aids to make her ‘brain and auditory nerve used to vibrations and simulation…’ In the two years since then, Charlotte’s parents had her fitted with cochlear implants and started training her in American Sign Language (ASL). Over two years old now, Charlotte communicates by speaking and hearing, and by signing in ASL, as she wishes. Her mother has documented this learning journey on her Instagram account.

To the majority of people who hear, this may seem like a straightforward story. But these choices between hearing and signing are a rare luxury for a majority of people with deafness. They are also part of a major ethical debate on deafness and disability — deaf activists have majorly pushed back against the idea of forcing deaf people to hear and ‘assimilate’ by using technologies like cochlear implants.

‘The Deaf (with a capital ‘D’) are a tight-knit community. They view deafness not as a medical condition to be cured, but as a cultural identity to be celebrated,’ writes Carina Davis in an essay for Nature.

Deaf culture stands against the impulse to force people to hear, insisting that oral language is not the only language that deserves legitimacy. A fully formed linguistic culture exists around sign language and the idea that deaf people need to be ‘fixed’ by making them hear is ableist at its core. Deaf culture dismantles this idea, by emphasising the formation of strong communities, shared hobbies, and collective experiences.

‘It is natural for deaf [people] to sign with their hands,’ Dr Chandani says. ‘So why invest so much money in “fixing” the ear when we have such a beautiful language and culture to embrace?’

An island containing a thriving example of deaf culture exists in New Delhi’s Kamla Market.

The Delhi Association for the Deaf was started in 1950, though it took on its present name only in 1977. Until then it was called the Deaf and Dumb Association — derogatory terms that have since been replaced with growing public awareness about the impact of ableist language.

Amar Dev, a support staff member here, shows me his membership card — a photo ID that is held by over 1,500 others across India (as part of the All India Federation of the Deaf). Members participate in annual events like sports day (for school children), annual day, dating and marriage congregations, picnics and festival celebrations, and avail assistance in navigating interactions with governments, local bodies, and legal as well as other institutions. Every Wednesday and Saturday, members also come to the association’s premises — the size of neighbouring shops in this market — to socialise.

Dev came to Delhi from his village in Jaunpur, Uttar Pradesh, when he was seven years old, the age that the younger of his two sons is now. His father admitted him as a boarder at Government Lady Noyce Senior Secondary School for the Deaf in the walled city’s Delhi Gate area. He studied here until class 9, and then moved to work in the informal sector. ‘Before joining here recently, I worked as a helper in a one-room school, and with a mechanic,’ Dev says.

Unlike Dev, his wife who grew up in the village, had no access to ISL. She picked up a little sign language in Delhi, where she lived in a shanty in Kalkaji after her marriage to Dev. ‘She has mental health problems, and has left Delhi with my younger son for our village,’ Dev says. Neither of their children are deaf.

Raja, the interpreter who facilitates my conversation with Dev, is hearing and can sign, and runs a shop selling air-coolers opposite the Association’s office. ‘I have a seasonal business of six months, the rest of the time I’m a social worker.’ Raja identifies as a [sign-language] interpreter and an advisor to the organisation, with which has been associated with for over three decades

‘In the 1980s, I was at an event for deaf persons at the YMCA along with my deaf friend,’ Raja says. ‘The chief guest spoke his address even as there was no sign language interpreter.’ The event prompted Raja to learn sign language himself and to start work with the Association.

Ruma Roka, the founder of Noida Deaf Society, has a similar story. ‘I saw a lady signing the Sunday news on Doordarshan and that was the catalyst,’ she says, ‘I had no background of deafness.’ She learnt ISL, and became the first teacher at the NDS. The institutions now has 57 trainers working across five Indian states. NDS also holds bi-weekly classes for hearing persons who want to learn sign language, in addition to weekend classes for parents of deaf persons. ‘We have to let go of the rigid mindsets that we have to teach them [deaf persons] to speak,’ she says, ‘Let’s get into the new “normal”, which is acceptance.’

In July 2019, the Delhi High Court gave its judgement on Nipun Malhotra’s petition, declining official language status to ISL while stating that adequate legal protections for ISL already exist. Despite this, Malhotra believes his petition triggered a useful conversation. ‘ISLRTC has become more active; during this year’s Cricket World Cup, for the first time there were sign language commentators, and the Indian National Congress in its 2019 manifesto promised to recognise sign language if it came to power,’ Malhotra says.

In March 2019, ISLRTC came up with second edition of its sign-language dictionary, as a follow-up to India’s first-ever ISL dictionary that it launched last year. Malhotra now hopes that the government will introduce a bill in Parliament to recognise ISL as India’s 23rd official language.

‘This PIL was the first step to ensure that the government starts working on sign language,’ he says.

On my way back from NDS, I rode for part of my journey in the Delhi Metro with NDS staffer Kalaparthi Sudheer, who showed me a YouTube tutorial on sign language. At the end of the journey, I thanked him for his help, in ISL.

Akshita Nagpal is an independent multimedia journalist based in New Delhi. She tweets at @AkshitaNagpal.

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Nothing to ‘fix’: Sign Language and Deaf Culture in Delhi was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

‘Mujhe na stand-up karne ke liye bulate hain dus minute ke liye, paanch minute baithne mein lag jaate hain.’ (People call me to perform stand-up comedy for ten minutes, but it takes me five to just sit on stage.)

This is how comedian Sweta Mantrii begins most of her stand-up comedy routines.

Based in Pune, Mantrii is also a freelance writer, filmmaker and disability rights activist. She was born with spina bifida and uses crutches. Mantrii is one of the few comedians in India talking about disability through the medium of stand-up comedy.

Stand-up comedy in India today is booming, with people thronging to comedy clubs and cafés to watch their favourite comedians perform. The material tends to revolve around the performers’ lives as city dwellers — experiences of dating, life in college, or working corporate jobs.

It is a context in which ‘issue-based comedy’ or comedy that addresses a larger cause or has a political angle is still nascent.

I decided to find out what other kinds of comedy that could also be defined as ‘political’ is being performed in India — specifically on the subject of disability.

In the course of this research, I found a handful of people like Mantrii, who actively identify as disability activists outside of their lives as comedians. And I also found a few others, like Aakash Mehta, who talk about disability (in Mehta’s case, living with depression and anxiety) without necessarily identifying as activists or making disability central to their acts.

For Mantrii, talking about disability on stage is about having control over her own narrative in that moment, in defiance of a social context which has been overprotective of her.

‘When I perform what I write, I own even those five minutes that I am on stage. People are listening and reacting to my opinions and jokes,’ she says.

Scholars have conceptualised prevalent attitudes and perceptions around disability in the form of models. Three of these models are the most widely known.

The medical model looks at disability primarily as a disease, that is located within the individual. It is seen as a ‘defect’ that requires medical intervention. Naturally, this model has been severely criticised by advocates for disability justice.

The social model of disability developed as a reaction to criticisms of the medical model. According to this model, it is society and its focus on abled people that causes disability. It looks at how inaccessible environments cause barriers and locates the problem with them rather than with the bodies of people with disabilities.

A third model looks at disability as culture, which argues that attitudes around disability are shaped by cultural practices.

Using this third lens, and looking at disability as culture, we could place the work of comedians like Nidhi Goyal, Aakash Mehta, Sweta Mantrii and Pooja Vijay as turning the gaze back to audiences when they make jokes about their disabilities because their material is centred more around how society perceives them as opposed to how they may feel about themselves personally.

Goyal, a feminist disability activist, often begins her sets by saying, ‘Hi, I’m Nidhi Goyal, and I’m blind. But so is love. So get over it!’

Goyal gradually lost vision in both eyes due to a congenital condition that manifested itself when she was 15, and is the founding director of the non-profit Rising Flame, that works on the rights of people with disabilities, especially women and youth.

She first performed at an event organised by a non-profit, at the encouragement of a colleague, but kept going because she saw that audiences were able to understand what she was driving at. ‘For me, it wasn’t even that people laughed but that they became more aware and reflexive about their behaviour… that encouraged me to do this more often,’ she said.

Comedians are also exploring psychosocial disability in their work. A few are making conscious attempts to talk about living with mental illness, and are being vocal about accessing therapy.

Recently, comedian Tanmay Bhat came out about his struggle with depression and the fact that he is on medication for it. However, he was criticised by some, including fellow comedians Aditi Mittal and Mahima Kukreja, for seeming insincere — the context of his disclosure was in the aftermath of #MeToo, and Bhat’s complicity in cases of sexual harassment. (Bhat himself is not accused of harassment, but of not doing anything even when alerted to a former colleague, Utsav Chakraborty’s, harassing behaviour.)

Pooja Vijay adds that it is not so much mental illness but women talking about sexual harassment that is unwelcome. ‘If a woman comes up and says her mental health is deteriorating because of being sexually harassed, she is seen as an attention-seeker, or as the stereotypical “hysterical”, “emotional” woman who is always “whining” (by both audiences as well as fellow comedians). But when a man does it, especially after he has been accused of sexual harassment, it is like, “Oh, we need to forgive him for all his trespasses because he has so much courage.”’ In other words, mental health cannot be used as a shield to excuse unacceptable behaviour.

Aakash Mehta has been vocal about his anxiety and depression on stage for quite some time. He recalls that the first time he spoke of mental health on stage was when he talked about his own suicidal thoughts. He finds both the on- and off-stage spaces within the comedy circuit relatively safe when it comes to opening up about mental health as opposed to with family members and friends outside comedy circles. ‘It is easy to vocalise things in front of an audience that is comprised of people you don’t know, and more importantly, people who will think you are kidding anyway. Backstage, with fellow comics as well, there is an unspoken understanding that one will not pry into the details of what was performed on stage,’ he said.

Kukreja tells me that talking about her mental health on stage, especially since the #MeToo movement was ‘uncomfortable’ for the audience and fellow comics as well: ‘[They’re thinking] should we laugh, or should we nod sadly? For me, it’s catharsis, a coping mechanism if you will. And sometimes it’s good to hear uncomfortable jokes that make you come to terms with reality.’

The inaccessibility of venues is still a problem both hindering comics and audiences with disabilities from participating in the growing culture of stand-up comedy in India. Places like Canvas Laugh Club or The Cuckoo Club in Mumbai, which are coveted by comics for the open mic performances they host, are completely inaccessible to people using wheelchairs.

Mantrii performs at open mics across Pune at least twice or thrice a week. But this is not always easy because she has always to check for the accessibility of a particular venue before she agrees to a performance there. Comedy producers have tried to be accommodating of her by sending her pictures of the washrooms at the venue so she knows what facilities are available.

Access to these public services, which should be available to everyone, and not just the abled, are even more of a challenge during monsoon. Something as basic as this sometimes means that Mantrii cannot make it to some open mics. ‘I tell producers, who generally require advance registration, that I will make it to the venue if it doesn’t rain that evening. They usually keep a spot open for me in that case,’ she adds.

Fellow comics have also assisted Mantrii in case of unforeseen accessibility issues, such as leaks in washrooms. But sporadic individual action can’t take the place of infrastructure that is designed and maintained in a way that everyone can use it, not just people without disabilities.

If physical access is one barrier, then social access is another. After making their way onto that stage, these comics are often performing material that stretches most audience members beyond their comfort zones.

While Indian audiences may have taken to political comedy a la Kunal Kamra or Aisi Taisi Democracy, the Indian landscape is currently conducive to popular (read: status quo) comedy that does not ‘ruffle too many feathers.’

The comedians I spoke to believe that the audience is the final judge on whether a certain kind of joke will work or not. Mehta says that sometimes the audience ‘pulls back’ when a joke about suicide is cracked. ‘There are different kinds of silences as well. one is the silence of reflection, when you may agree or disagree with my opinion. But the problem is when they will simply not even give it space to be expressed,’ he said.

Both Goyal and Mantrii also sometimes find audiences pulling back because of both gender bias and ableism. According to both comedians, audiences are used to looking at certain types of bodies on stage — primarily young, abled male comedians. So when they see a person with a disability perform, especially a woman, they are already looking at the performer from a gaze of pity. Getting them to laugh at their jokes in such a situation is a challenge. ‘Earlier, I had a joke that talks about how fat I am, which I would mostly share with my friends. But while they would laugh, the audience I performed to would not. It was then I realised that it is important to make the audience your friend for that brief moment if you want your jokes to work,’ said Mantrii.

For Goyal, setting the context is key when it comes to talking about disability. Telling them about her context requires her to spend more time with the audience. ‘People with disabilities have only just begun performing comedy. The audience needs more time to get used to us,’ she said.

The signature punchlines both Goyal and Mantrii deliver at the beginning of each set is therefore crucial to their performance on stage, making sure the audience is with them in the ‘first 40 seconds of the show’, as Mantrii puts it.

‘Communicating is a complex process involving several intersecting identities. It is not so simple as to say that one is pandering to the mainstream narrative by talking about their disability as a joke. As a performer, it is important to acknowledge diversity considering there were other kinds of bodies who may have performed before you or will perform after. As a person on the street, you are not obligated to address your disability, because it is none of their business whether you are blind or not. But as a performer you are. It could also be called the basic principles of communication — connecting with the audience,’ says Goyal.

Goyal finds that people laugh the most when she talks about her experiences as a woman, especially about dating, marriage, and relationships. But it is also in this realm that she faces another major barrier. ‘In fact, even disability is acceptable in some situations. What is not acceptable is sexuality. Even when I tell them I won’t crack sex jokes but want to talk about sexuality, they refuse. Sexuality is not okay in any context — disabled, non-disabled, whatever. I am told to keep the content “decent.”’

Goyal has been vocal about the intersection between sexuality and disability in much of her work as a disability activist in the past. Through her activism, she tries to break the assumption that people with disabilities are asexual because ‘they have more important things to worry about than sexuality.’

Criticising the Modi government’s push to call people with disabilities ‘divyang’ (divine-bodied), Mantrii says, ‘Our need to glorify anything we pity is high. Calling me ‘divyang’ does not change the reality that i have to navigate treacherous streets, which have led me multiple times to have severe injuries,’ she said. ‘These terms are only used to make able-bodied people feel better about themselves.’

This same attitude leads people to ask her inappropriate, prying questions. And it is humour that she deploys to respond to these. Once, when she was asked whether she could shower alone, she said that she showers ‘with a boy from the neighbourhood every day.’

Vijay, who has a stutter, also makes similar jokes. ‘I would say that during sex, by the time I say his name, he’s done,’ she quipped.

Both Goyal and Mantrii are pushing boundaries to redefine what the purpose of comedy is, blurring the line between their work as activists and their art, as performers of comedy.

Mantrii organises a show called ‘With This Ability’ where in addition to performing stand-up, she first asks questions of the audience to address the stereotypes they believe in about people with disabilities, followed by an ‘Ask Me Anything’ session at the end. ‘The idea was to-break psychological barriers that people have built around disability,’ said Mantrii. She is now performing corporate shows to raise awareness around inclusivity.

Comedy is an integral part of their identities as feminist disability activists. However, while they wait for audiences to catch up, they continue to actively campaign for the rights of people with disabilities.

Madhavi Shivaprasad is a PhD scholar in the Women’s Studies centre at TISS, Mumbai working on stand-up comedy and gender for her doctoral dissertation.

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‘I’m blind. So is love. Get over it!’ Disability and stand-up comedy in India was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

Image description:

The image is a comic strip with seven panels.

In the first panel, a person is shown being punched from both sides by two thought bubbles. One is these is red and the other is blue.
Text — Social anxiety attacks me with two opposing thoughts…

In the second panel, a person is shown on stage, being booed by the audience.
Text — Thought 1: Everyone is constantly watching and judging everything I do.

In the third panel, six characters are silhouetted against the background. While five of them are solidly coloured in black, one of them is barely there — drawn in dashes.
Text — Thought 2: No one will ever notice me. I am invisible and unwanted.

In the fourth panel, four people link arms and stand clustered together, while a fifth person stands by themselves, away from them, arms folded.
Text — To others, it appears as if I’m being too reserved, or arrogant.

In the fifth panel, the two thought bubbles shown previously battle each other.
Text — Recently, I’ve started pitting these thoughts against each other.

In the sixth panel, a person is shown wearing a striped shirt, with a whistle around their neck.
Text — And I’ve become a referee in this fight!

In the seventh panel, the referee is shown speaking, with their hands up. The blue and red thought bubbles are drawn on either side of them.
Text — The red thought bubble says ‘Everyone constantly judges me!’
The blue thought bubble says ‘No one knows I exist!’
The referee says: ‘If no one notices us, let’s just to what we want without fear of being judged!’

On the bottom right, the comic is credited to @missfitcomics.

Note from the artist:

Social anxiety is difficult to live with, mostly because it fills your mind with thoughts of self doubt. On the one hand, it tells you that you’re constantly being judged (negatively) by everyone, no matter what you do. On the other hand, it tells you that you’re not even noticeable to anyone, and none of your thoughts or actions matter.

Since childhood, I’ve always found it difficult to be around people and make friends. I am great with one-on-one interactions. But when there are more people, I lose confidence. I hardly ever say what I want, and never assert myself. I try to accommodate everyone’s opinions without expressing my own, because somewhere at the back of my mind, I feel that my views don’t matter. I also feel that revealing my personality too much will open me up to a lot of ridicule and humiliation.

During my school and college days, I found it very hard to form strong bonds with others. I used to sit, dress, and behave in a manner that didn’t invite any sort of attention. Only when I was alone in my room did I feel like I could truly be myself.

These two opposing thoughts — that I am invisible, and that I am being ridiculed — are terrifying during social situations. But what if I were to pit them against each other? If I am invisible, there is no one watching me with judgmental eyes. So I should just do what feels right! This idea, along with a little bit more self esteem (which keeps growing day by day), has made my life so much easier.

I no longer feel the need to hide myself. I am still awkward and uncomfortable, but I make it a point to be true to myself, and show everyone what I am really like.

Who knows? They might even like me.

Tanika Godbole is the artist behind MissFitComics, which features comics about current news, feminism, and pop culture.

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Comic: Living with Social Anxiety was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

‘There is a crack, a crack in everything.
That’s how the light gets in.’

Leonard Cohen, ‘Anthem’

The safe spaces of my childhood were not in the rooms of my house, or any house for that matter. During regression therapy, when my former therapist asked me to find a particular room that made me feel safe, I could not. Lying on the therapist’s couch, in my mind I would walk down dark staircases, and always get stuck midway. Stairs would vanish with me standing, with one leg dangling midair. I did not know what I did not know. My therapist would tell me that there was something stopping me, and that that something had to be given a shape — a ghost, a ghost with unrequited feelings or, as I was often told during the course of therapy, my mother.

But my safe spaces were not rooms. They were in my palms joined together and held tightly over my eyes. They were my eyes firmly shut into a darkness so dark that I could see flashes of light. I could see a candle flame hanging in the air. When I was younger than I am now and more naïve, I tried tilting my head to see how much control I had over this light. As I got accustomed to these patterns of light, which I later discovered were called phosphenes, I could imagine the patterns to be various things — an arrangement of candle flames could be such that you could mistake it for a reindeer from Christmas decorations.

I could spend hours immersed in these visual puzzles as the world around me fell apart. They helped me survive my parents’ quarrels, fights, and serious threats of separation. From an early age, I knew I was blessed with a superpower: like Plath, I could shut my eyes and the world would drop dead. When I opened them much later, by evening, the world would sort its mess out and gather the semblance of a home. While for my parents it had already been a long day, from morning to evening, for me only an instant had passed, in the blink of an eye.

Over the years, as I tried to recover from a long phase of depression and anxiety, I went to various therapists. I spoke to them about my personal history — my mental health, my rage which I wore like a shield, its impact on people around me, and, of course, my family and my eternal search for home.

We spoke about the lovelessness that I experienced as a child, and the emptiness from there that never leaves. We spoke about my insecurities: what happens if I lose my romantic relationship? Why do I think I would not survive without it?

More often than not, the conclusion through the various gateways of regression would lead us to my mother. I cannot count the number of times we repeated the patterns: ‘Who does this insecurity belong to?’ ‘My mother’; ‘Who does this fear belong to?’ ‘My mother’.

These were questions I felt I had to come up with the correct answers for. I was rote learning the cause of my illness. I was told I needed emotional and physical distance from my mother. I did, for my well being, but not in a way in which I needed to stop existing or caring for her.

What was not taken into account was the socioeconomic and sociocultural realities that made my mother, her own ill-equipped battle with mental illness, and what, despite all these issues, she gave me.

Her always-ignored domestic labour throughout my childhood and early adulthood bought me the time now, to sit here and write this essay. I cannot think about how many times when it was all darkness, closed doors and lost hopes, she stuck around with clenched teeth, choosing to invest in me instead of her own clinical depression.

She could not teach me the idea of boundaries and space, which perhaps as a second generation Sylheti migrant in Assam, most of whom lived in unimaginably big joint families with one member feeding ten, was a concept never available for her. But she taught me that caring for people is a moral responsibility, which even if you think is problematic or conservative, is a belief I refuse to entirely give up.

She of course considered her emotional and physical labour her duty as a mother and a wife. Patriarchy, generations of patriarchal preaching, had made her believe a ‘good’ woman, an ideal wife and mother must tick certain boxes to be seen as ‘complete’. Social norms mandated that she even take pride in her world and identity being limited to her parents, in-laws, husband and me.

‘In South Asian culture mothers of particular generations become repositories for trauma and really have no access to support or help in raising children or even parenting,’ psychologist and author Scherezade Siobhan tells me. ‘What you then see are mother-child relationships fraught with gaslighting and abuse. Classical analysis fails to account for this…It is also woefully unequipped to handle or decipher aspects of inter-generational trauma at the root of mental health and wellness when it comes to people of colour, non-white/non-European/non-mainlanders.’

My mother too is an archive of everything that went past and is continuously happening to her. She is a woman, a mother, a wife, a daughter-in-law — and has to constantly navigate all kinds of emotional burdens that those roles carry. She is, of course, a survivor of her own trauma but her body and mind are also riven by the Partition, the experience of being a refugee, regular bombings which were common in Assam when I was growing up, the language movement where people were burnt alive in broad daylight, the fear of loss of land and of deportation.

When she calls me now to check if I have returned from office, she is as afraid as she was when she would call and check on everyone of us after an ULFA bombing. No therapy or healing can happen without addressing these realities.

My conundrum is if the relationship between my mother and me does not heal, can I heal without a brutal divorce from her? And, even if I convince myself to separate from her, how do I stand in front of the mirror the next night and talk about lofty ideas of ethics, historical oppression and intersectional understandings of politics?

Psychological practices that do not engage in larger political dialogues — on casteism, patriarchy, capitalism, heteronormativity, ableism — function in their own bubble. They tend to preach recovery as an individual goal divorced from the world that will continue to affect us.

In March 2016, the New York Times published an opinion piece by a US-based therapist called Richard Brouillette. The article. titled ‘Why Therapists Should Talk Politics’ raises pertinent questions about therapy’s need to engage in political dialogue.

Brouillette writes:

‘Typically, therapists avoid discussing social and political issues in sessions. If the patient raises them, the therapist will direct the conversation toward a discussion of symptoms, coping skills, the relevant issues in a patient’s childhood and family life. But I am growing more and more convinced that this is inadequate. Psychotherapy, as a field, is not prepared to respond to the major social issues affecting our patients’ lives.’

Most of us seek therapy in deep crisis and pour ourselves in the four walls of the shrink’s room. That’s when we are most vulnerable and we expose ourselves because we believe this might be a space where we will learn how to breathe without choking.

When this space and person too makes you feel you do not belong, therapy can become a tool for furthering social ostracisation, as Rachelle Bharathi Chandran observes in zir essay for Skin Stories, narrating zir personal experience with therapists:

‘I only met upper caste psychologists and psychiatrists with whom I never felt comfortable discussing money or the general anxiety it brought, especially because I was constantly in and out of hospitals because I was ill.’

In my regression therapy sessions, we were spending too much time dealing with tangible persons and spaces that my therapist believed were the causes of my condition. Perhaps my therapist thought that a narrative made up of non-abstract characters would help me get a grip on the already slippery, faceless depression that was overwhelming me.

A villain? I did not need a person to put the blame on. What I needed was the understanding of how social structures oppress people in various ways. What I needed to understand was that if the world was unkind to me, it was even less kind to my mother.

In hindsight, so much could have been different. I could have been less lonely as a child. My parents could have been perceptive enough to get that my aloofness was my resistance against years of shaming me for my body and my emotions. When I feigned illness, it was a cry for attention that should not have been dismissed or pathologised by taking me for IQ tests where I was declared unintelligent, or to doctors who summarily dismissed me as ‘a maniac’.

Maybe then, I would have been able to tell them about the transphobic slurs that were hurled at me by neighbourhood bullies every time I walked out of the house, just because I had a protruding chest as a fat child. I would not have been a wobbly walker, who is still worried about being watched from behind. I would not have thought that by joining the gym and becoming lean, one could get back at society. I would not have, for the longest time, believed that sexual abuse cannot happen to men, even though it happened to me many times.

I have never asked my mother if she knew why when after a quarrel with a private tutor I once had, she decided to beat the crap out of me. I don’t know how to have a conversation with her about why she becomes uncomfortable and heartless with anyone new around me, be it a flatmate, a friend or a partner. I cannot even communicate my need for space to her, because we do not have the same language anymore.

Therapy did not teach me how to reach her. It did not give me the tools to even start my journey towards healthy intimacy. If the aim of therapy was to teach me how to navigate the world with compassion, it gave me no overt signal of its willingness to do so.

It perhaps has something to do with the fact that I tried regression therapy, which is obsessed with locating your trauma in the past, and if necessary stretching it to even an imagined past, and creating an interaction with the present through hypnosis.

Siobhan feels regression therapy ‘is so rooted in the abject force of determinism and being tied to a past one couldn’t have controlled that it renders itself ineffective.’

A practising psychologist, Sadaf Vidha, tells me that therapy must guide you beyond singular ideas of victimhood. Therapy, Vidha says, must help you answer, ‘Okay, this happened, and now what? How do I not re-traumatise somebody else?’

An awareness of our surroundings equips us to practise what is at the heart of our mental health discourses — empathy. Therapy practices that do not recognise this push us into a vicious cycle of victimisation, finding a way out of which is difficult.

Telling myself a thousand times that my problems are my mother’s is not going to rid me of them. If I believe depression is a person and pushing them away cures me, what will I do when the people are gone and I am still here with the living and breathing pain inside me? Does therapy make provisions for these concerns? If it does not, it should.

Debojit Dutta is a writer and editor based in New Delhi, from where he co-runs the literary webzine Antiserious. His works have appeared in Himal Southasian, Scroll.in, The Wire, The Bombay Literary Magazine and Aainanagar among other places.

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Dear ex-therapist, when I say one thing, I don’t mean my mother was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

by Niluka Gunawardena

‘Bet they don’t sell those at H&M,’ is probably what she thought while peering into my bag. I was humming tunelessly — oblivious to the peering, as I was to the staring — until my little sister pointed it out. So we stared back. Peering, staring, glaring — what a delightful past time for a mass of people involuntarily clumped together on a bus.

That day, I was quite clumsily and carelessly carrying around what was perhaps my most expensive accessory. My parents were so proud. It was something girls from our ‘community’ wore to indicate their ‘coming of beauty.’ At the threshold of adolescence, I was the last person on earth to wear a gaudy thing that my parents thought would make me look pretty.

I was also a ‘good girl’, cognisant of the fact that they had spent a fortune on this crown of utility. So I kept making all kinds of polite excuses — it’s too hot, it’s too heavy, it’s too stuffy, it’s too new, it’s too sweaty — a string of unbearable sufferings. Having exploited their parental compassion, I managed to stuff my new accessory in to an H&M bag.

Before getting on the bus, I thought it was pretty well-concealed, but I soon realised that my secret was a little too long and kept jutting out and literally waving at all those jealous people. Suddenly, the bus halted. Being tourists on a shopping spree, it took a while for us to realise where we were.

My roadrunner mother suddenly jumped out and held the door for the rest of the brood, hurrying everyone along. I was still in a state of oblivion. It took the bellowing calls of my mother to really wake me up.

She had reasons to bellow:

a. my obvious inattention and forgetfulness
b. the prospect of losing a precious child to the London metro
c. the prospect of losing an esteemed accessory to the London transport system

With all her energy and in all earnestness my mother shouted:

‘Niluka! Don’t forget your arm! Get your arm out of the bus!’

So I desperately clung to my arm and rushed out with a hundred eyes glued on me. I was flushed pink inside and thanked god that I was brown outside. Suddenly, the ridiculousness of it all made me roll over with laughter. My family laughed, the driver laughed, some passengers laughed. The lady’s suspicions were confirmed so she also laughed.

Most were still perplexed. Some probably thought my foreign-looking mom didn’t know English. Perhaps others thought arms in bags was a matter for Scotland Yard.

Whatever people thought, I said goodbye to that bus holding (not wearing) my very first arm.

Functional, cosmetic, both — prosthetics have become the must-have accessory in the disability world.

When I was younger, random strangers would ask me one of two questions:

a. what happened to your arm?
b. why don’t you wear a prosthetic?

As utilitarian as a prosthetic is, I personally find it burdensome. This is not to discount the countless benefits of using a prosthetic. It happens to be an individual preference. It’s probably due to my obstinacy and aversion to change. I have come to love the fleshiness, touch and corporeality of an ‘androgynous’ stumpy arm.

With that, comes resentment towards hard, robotic, silicon appendages that break the tactile intimacy that I share with the world, disrupting the aesthetic wholeness that I often (but not always) feel.

My memories of that bus ride are probably exaggerated, but it marked the birth of a feminine alter-ego. Despite all my refusals, I was always coaxed into wearing my new limb to social events, especially weddings.

Weddings are occasions when the bride looks ravishing and all the other females, especially the single flowers in her presence, are expected to adorn themselves to the high heavens to affirm their bridal aspirations and perhaps even catch the eye of a handsome stranger. It is an occasion for social approval. Simply put, it is an event for the appraisal of many daughters by parents of sons in a semi-incestuous system of class- and caste-based matching, pairing and status sealing.

At these events, some relatives tried to ignore my magnificent accessory, more gender-affirming than any other costly jewellery worn by fellow maidens. Others tried to guess what change has brought about my newfound elegance. My well-meaning grandparents delighted in my new symmetry and said that maybe one of those cute boys would now look my way.

They failed to realise that not all flowers bend towards pretty boys… They failed to realise that I just might accidentally and very powerfully hit a cute boy with my Dr Octopus like free-minded arm while trying to dance. I noted how I (accidentally) crushed a glass with my lady arm at the previous wedding. Perhaps my arm and I were not such delicate damsels after all.

After those spectacles she would be summarily wrapped up in a bag and chucked into the darkest recesses of my closet. ‘Thanks for helping me pass,’ I’d say to her with a smirk and walk away.

Not long after that last wedding, I read an article in Reader’s Digest that argued that the secret to a woman’s beauty lay in her symmetry. My achchi always kept a picture of a pretty, symmetrical granddaughter in her room on a very prized shelf.

Donna Haraway famously wrote a manifesto for a cyborg world where notions of gender roles, identities and the power dynamics of corporeal doctrines would be obsolete and incomprehensible. I was certainly getting closer to a cyborg world of my own… but one that was far from Haraway’s.

I’ve come across plenty of cyborg stories. Prosthetics for survivors of disasters, survivors of wars, and most importantly, heroes ‘fallen’ at war. These days in postwar Sri Lanka there is a great din over raising funds to equip wounded soldiers with prosthetics. With a bit of imagination, all the stories could be summarised as the miraculous restoration of masculinity, virility and dignity of incomplete, scarred, battered, once-heroic bodies through limb technology.

The other day I read an article about a new bionic arm, the most state-of-the-art myoelectric device available under the auspices of a titan Scottish biotech firm. Such coverage talks about how soldiers are back at target practice, running through the rugged fields thanks to new technology. The coolest thing I noticed about this arm was that it wasn’t merely a fudge of steel bolts, wood, plaster, silicon and all the other ingredients used to bake an arm. Rather, it looked like a super-tool built with space-age material, giving armless guys the cool, formidable Terminator edge and stumpy girls a sleek, chic, Amazonian persona. Now who wouldn’t want that!

After years of hiding my lady arm I suddenly started scouring the internet to find the perfect accessory. After years of having being told that short sleeved clothes were a no no, I finally had a fashion advantage! No ‘fully armed’ person would ever get to wear it! That was my primary motivation in addition to the news that this new toy was more flexible, adaptable and aesthetically palatable than any other arm created before.

Site after site, I saw the same stories: veterans extolling the life-changing virile potential of it, women chopping vegetables and holding babies with arms gentle enough for a mother. Men drilling holes, wielding power saws and opening cans — the real macho man. I kept resenting how guys always get the best clothes and toys; not necessarily because I wanted to drill holes but because women always wore the ‘natural’ looking ones with painted nails while men got the steels, metallic, futuristic ones in colours of their choice.

I hoped they would customise and build me a magnificent androgynous one.

Many of us with ‘impairments’ become cyborgs. We become cyborgs so that we may not be ‘disabled’. We become cyborgs through prosthetics, speech aids, pacemakers, reading glasses and a plethora of other technologies.

Millions of self-proclaimed non-impaired people become cyborgs every morning by affixing their minds and bodies to computers, TVs, video game consoles and more. Gadgets begin where the skin ends. Plenty more than stumpy-armed folk become silicon cyborgs through implants, lifts, fills and enhancements.

Cyborgs are all around us in an all-natural world. Perhaps cyborgs are naturally who we are. Our flesh and psyche become — intimately, embryonically — entangled, inter-twined, fused and merged with the hardness, the boldness and the molecular, nanoscopic immortality embodied in technology.

Of all, disabled cyborgs are the most beloved and the most dangerous.

Famous cyborgs like Robo Cop and the Bionic Woman were ‘once impaired’ mortals who became invincible in their hybrid bodies.

Cyborgs like Aimee Mullins — broken, delicate damsel in her cosmetic legs; sexy Artemis in her athletic legs. What other girl can change her legs, body and being at will like Mullins?

Such is the existence of a disabled cyborg. They inhabit a space that is neither mortal, immortal nor liminal — a space yet to be defined, yet to be conceived of. It’s the unknown, the myth of the cyborg that places those of us with impairments in a unique state.

The prospect of a disabled super body is a full-frontal assault on the supremacy of the ‘normal’ body. Interestingly, cyborg bodies guarantee immortality to vulnerable, ‘normal’ mortal bodies. A cyborg culture may lead to the complete acceptance of the mortality of human corporeality through the obsolescence of the concept of human corporeality as we know it. If they are broken, they may function as well as or even better than ‘before.’ Broken bodies combined with the promise of eternal youth create disabled cyborgs — demi-gods!

Much of that works in theory. In reality, I’m losing interest in strapping or fusing on a bionic lady arm. It feels like yet another passing phase — the kind of hype that came and went with Avatar, another blockbuster movie about disabled people, cyborgs, aliens and more.

The next time someone stares at you when you are using an assistive device just look at them with a terminator glint in your eyes. You will either scare the life out of them or they’ll come to you with requests for autographs and other favours. That constantly happens to a good friend who uses a communication device in her public presentations. People have more questions about her super cool voice than her actual presentations!

The fact remains that our prosthetics, aids and assistive technologies still propagate many of the notions of ‘normalcy’ that we hold, whether they are about bodily form, gender or sexuality.

Our cyborg bodies, despite their tremendous subversive potential, still become canvasses for the same power dynamics that we as activists constantly try to challenge. Perhaps it’s because cyborg bodies as we know it are born from those very same dynamics. We do not even realise that our appendages, and hence our bodies, are indeed agents of pre-existing dynamics, often in the most hyper-masculine, hyper-feminine, binary and heteronormative forms.

We also do not notice how sometimes, perhaps even accidentally, these cyborg bodies radically undermine pre-existing notions of ability, gender and sexuality. We don’t realise this because when it comes to our bodies, our cyborg bodies, our bodies adorned with hearing aids, glasses, crutches, prosthetics, canes and more, we often hide, resent or forget.

I used to run
Run from pain
Run for refuge
Run alone
And now with you
I still run…

Niluka Gunawardena is a disability rights advocate, researcher and educator based in Colombo, Sri Lanka.

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Stumped: the possibilities and pitfalls of a cyborg world was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.

‘Can a dyslexia programme help a 40–50 year-old child?’ said Prime Minister Narendra Modi with a chuckle to a gathering of students at IIT Roorkee. This was a tasteless statement in which he was alluding to his political rival, Rahul Gandhi.

It shouldn’t come as a shock that Prime Minister Modi made such a statement — it wasn’t his first time. As the Gujarat chief minister, while trying to make a seemingly progressive statement, he made an unbelievably casteist and ableist remark, drawing parallels between Dalits and children with intellectual disability.

These statements are not coming from a place of lack of understanding but form part of a political status quo — across party lines, politicians in India regularly take jibes at their opponents by deliberately deploying crass ableism.

PA Sangma, when contesting the presidential election with BJP’s backing, infamously said that the country needs a ‘functional PM, not a deaf and dumb one’, while PM Modi during his 2014 campaign made yet another discriminatory comment, stating that India does not want a ‘handicapped government.’

In 2015, CPI(M) MLA Elamaram Kareem attributed the losses of the Kerala State Road Transport Corporation to the concessions granted to people with disabilities, which triggered a massive row in the state.

In 2017, actor-turned-politician Raja Ravi, who joined the DMK, mocked the party’s rivals by likening them to children with disabilities that wanted to play with abled children. He did this while making derogatory facial expressions during his speech, which was widely condemned and saw disability groups and activists taking to the streets in protest.

These are just a few examples of the widespread insensitivity and lack of empathy that characterises political discourse by the leaders of the world’s largest democracy.

According to the 2011 census, 26 million people or 2.2% of the Indian population is disabled, a figure exceeding Haryana’s population. However, the World Bank estimates the figure to be significantly higher, between 40 to 80 million, equalling Poland’s population on the lower side and of Germany’s on the higher.

The Election Commission pulled off the world’s largest democratic election, with facilities to help people with locomotor disabilities to exercise their franchise, yet no national or regional party has fielded any candidate with a physical disability.

As mental health and other invisible disabilities are more difficult to quantify on election affidavits, and given the nature of the general stigma around them, no elected representative or political candidate has spoken about any mental health issues they may be living with. On the contrary, the Indian Psychiatry Association has had to advise politicians to exercise restraint while taking potshots at their opponents during elections and refrain from using slurs like ‘mental’ or ‘go to a mental hospital’ while doing so.

The 16th Lok Sabha saw disability being discussed in both houses of Parliament, with the Lok Sabha raising 51 questions on disability and the Rajya Sabha raising 40. The questions ranged from whether separate governmental departments exist in states to look at disability affairs, to sensitising government officials and making public spaces accessible, to the provision of disability quotas in government jobs. It also saw the passage of the Rights of Persons with Disabilities Act, 2016, which lists 21 different disabilities.

Yet, disability and mental health are rarely the linchpins of political conversations, with work on accessibility and inclusion sparse at best.

BJP, in its 2014 manifesto, proposed ‘identifying people with special needs, making public spaces more accessible to them and providing higher tax relief for their families.’ In 2015, the Accessible India campaign was launched and the Prime Minister suggested a change in nomenclature to address people with disabilities as ‘divyang’ or ‘divine bodied’ instead of ‘viklang’ or ‘disabled’. A seemingly well-intentioned move, but one that reeks of ableism, and does little to address the real problems of discrimination. Calling people with disabilities ‘divine’ instead of thinking of them and treating them at par with abled people further marginalises them — countless people with disabilities have talked about the problems with this kind of language.

And it doesn’t translate into any real change — we are still far from achieving goals like driving licences and designated parking for people with disabilities, cars which can be used by both the abled and disabled, and accessible pavements so that people with disabilities can independently traverse public spaces.

The Congress manifesto covered disability only as an afterthought by including a provision for ‘life and disability cover’, entirely overlooking measures for education, employment and non-discrimination.

The 2019 manifestoes improved marginally, with the BJP emphasising the ‘accessibility of public spaces, strengthening pre-school, and Anganwadi systems to recognise disability at an early age and offering higher FD rates.’ The Congress put in slightly more thought, to not only emphasise accessibility and non-discrimination, but also the sensitisation of ministers and government departments.

The Congress also proposed making all aid devices GST free, ensuring quality education is imparted, and the inclusion of Indian Sign Language (ISL) as part of the country’s official languages. This could have been prompted by the BJP including ISL during the live coverage of the Republic Day and Independence Day celebrations.

The problem isn’t restricted to manifestos alone, but applies to political agendas as a whole.

Women with disabilities enjoy even less bodily autonomy than their abled counterparts and are frequent targets of sexual violence. A Human Rights Watch report from 2018 highlights the challenges women with disabilities face in obtaining justice, right from registering their complaint to having their trauma being taken seriously, to getting medical treatment and adequate compensation from the judicial system. While politicians state that women’s safety must be ensured, they forget to mention how some women, specifically women with disabilities, are even more vulnerable to physical and sexual violence.

The Bhopal Gas Tragedy is another strong example of how people with disabilities are routinely ignored by the government. Since 1984, the central and state governments have not been able to provide adequate compensation to the families affected. The final compensation most people received was between Rs 25,000 and Rs 1,00,000, while the toxic waste accumulating in the area has seeped into the water. This impacts children with disabilities affected directly by the event.

This lack of prioritisation of disability extends to concerns of accessibility as well.

There are a few stray positive examples. The Archeological Survey of India (ASI) has been championing the cause of accessibility. Since 2014, ASI has selected 10 monuments nationally to install Braille signage at, published a guidebook of northeastern monuments in Braille, and selected 50 monuments specifically in Gujarat that would also have Braille-signage after Ahmedabad was chosen to become a ‘smart city’. The Jammu and Kashmir High Court has asked for an accessibility audit of public spaces, while the Meghalaya cabinet approved increasing the quota for the disabled in government jobs.

However, not all government bodies have prioritised accessibility.

Most state government establishments and private companies have not notified and registered their Equal Opportunity Policy, two years after the Disability Act was passed. The Accessible India campaign launched after the Disability Act with a view to make 50% of all public transport and buildings fully accessible by June 2018. For this exercise, 1,707 buildings were identified and pointers were given by auditors across 57 cities on how to make spaces more accessible. But four years on, only less than 10% of all public buildings and transport have been made fully accessible.

After the new series of currency notes were launched, a PIL was filed in the Delhi High Court in 2017 after an online petition by The Blind Graduates Forum of India (BGFI) stated that visually impaired persons faced difficulty carrying out daily transactions, as the currency notes were indistinguishable from one another. When the last series of notes was released, the RBI held consultations in 2009 and 2011 with committees with visually impaired citizens, that decided on tactile markers which would help people distinguish between the notes. The new notes have not only forsaken the markers but the difference in the size of the notes is also greatly reduced, further adding to problems.

Unless you’re extremely privileged in other ways, getting access to basic rights and services becomes an immense obstacle if you’re a person with a disability in India.

Getting an education becomes a hurdle as lakhs of students in the country need to travel far from their homes to reach a school. Even if a person with any disability were to travel to a school, the space itself is likely to be inaccessible in multiple ways, all stemming from ableism.

Avenues for employment and opportunities for career growth that the abled can access much more easily are not available, in either government or private jobs. There is a basic lack of public infrastructure designed with everyone in mind, and not just the abled.

Most politicians have been circumventing the conversation and failing to enable a constructive dialogue on disability unless they have to use it for votes.

The current environment is more receptive to talking about disabilities and mental health than it was earlier. The time is ripe for elected representatives to remove the ableism from not only their discourse, but their agendas and approaches, and act on the promises they have been making to people with disabilities.

Akriti Paracer is a writer and environmentalist based in Delhi. She can be found debating politics on Twitter (@akrii_p) or giving book recommendations on Instagram (@akritiparacer).

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Note: This article previously incorrectly stated that MLA Elamaram Kareem spoke about the Karnataka State Road Transport Corporation. It has been updated to the correct location, Kerala.

From speeches to implementation, Indian politics is discriminatory to people with disabilities was originally published in Skin Stories on Medium, where people are continuing the conversation by highlighting and responding to this story.