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“You Don’t Look So Disabled”: I’ve Been Navigating Life In An Ableist World

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Trigger Warning: Experience of Bullying and Ableism.

How do you make friends? You can’t even walk properly.” These were the words that I heard in the first year of my college hostel room. Traumatic memories of the ableism that I’ve experienced as a disabled person.

I have had Cerebral Palsy with Spastic Hemiparesis on the left side of my body since my birth. My mother usually says, “If I didn’t have Jaundice during my pregnancy, you would’ve been born normal.” The idea of becoming “normal” was put in my mind from the very beginning. Normal meant “being cured or to be fixed“. In the ableist society, disabilities are often seen negatively as a burden and the narrative of getting cured of the disabilities to lead a normal life is just problematic. The cure-focused ableism is what I’m experiencing every other day.

Seedhe chalo, haath khol ke rakho. Jaldi hi achhe se doctor ko dikhaynege aur sab theek ho jayega” These phrases by my able-bodied relatives keep on echoing in my mind, among other things. The instructions to do things a certain way had made me conscious of my own body and identity.

Internalising ableism peaked when I was in high school. Mostly everything is wrong with Indian school spaces: toxic, inaccessible, ableist, homophobic, and whatnot. Non-Disabled people are often curious about disabilities, often to ridicule people with disabilities and their sexuality. Similarly, my classmates from the new school were curious about my disability and why I walked a certain way, only to predict the incoming bullying. Answering disability-related questions could be anxiety-provoking for people with disabilities as it means going back to traumatic experiences and we might not even feel safe while opening up to somebody.

If you genuinely want to know about disability and be a supportive ally, then you’re most welcome. You could even find online resources around disability and educate yourself before asking any inadequate questions to make disabled people feel uncomfortable, sadly online resources could be inaccessible. Language can be used as an oppressive tool, and using slurs in everyday life which are ableist in nature could be triggering for the people from the marginalised disabled community.

The sports/games period was always a time in school during which I panicked the most. I felt anxious getting on the playground, as I’ve been bullied and called names many times for walking a certain way and for having different hand movements. I started getting an aversion to sports in school because of the constant bullying by a few classmates for running differently and maybe not being able to catch the ball.

I was usually the last person to get selected in teams during the few times I gathered the courage to go to the playground and play. I used to move back in the line when my turn was about to come for running and always found a group of friends who didn’t want to play and just sit and talk. Oh, the fear of not being judged had taken up a huge space in my head and I felt normal only inside the enclosed walls of my room when no one was around.

Always being surrounded by the toxic behaviour of boys who boasted about their non-disabled bodies for being able to do great in sports, I wanted to be accepted. Yes, I loved watching football during my childhood and played it with my brother at home, but when the time came to play football in school, the anxiety of not having a “normal body” came in. This worsened with each passing year and I felt happy on the rainy days because no sports on those days, and this has continued into my college life too. I don’t like to play sports with more than two or three people.

Genderization does create a lot of hierarchies and inequalities. Boys and girls, from an early age of 8 or 9 years, are expected to do things in a certain way. I did expose myself to activities that were supposed to be done by boys only through socialization. Now, I’m unlearning things.

Image of an empty wheelchair in front of a desk that has a an open laptop with a blank screen on it. In the corner or the image a part of the bed is visible.
Image only for representation purposes.

Sports activities in school are not inclusive and are a constant source of anxiety for students with disabilities. In addition to that, my body weight, which was constantly increasing during adolescence, doubled apprehensions surrounding my very own self.

A classmate in seventh grade made an ableist slur in Hindi in the comments of my full body profile photo on Facebook. I felt publically humiliated, and since then, I’ve had apprehensions about putting myself out there on social media.

My disability isn’t immediately visible unless there are some limbs movements. The most common ableist phrase I hear is, “Oh, You don’t look so disabled“.

We need to call out such statements as by simply looking at someone, you can’t tell if a person is disabled and there are many invisible disabilities, and it’s always not physical. All kinds of disabilities are valid and you don’t need to necessarily respond to those who question your disability, it could be triggering.

It was a few months back that I started embracing my disabled identity after years of lived experience as a disabled person, and I accept my differences. I’m Disabled and not specially-abled or differently-abled. Stop tone-policing and intimidating people from marginalised communities. In no way, able-bodied people should narrate the lived experience of people with disabilities. We would reach out to you if we need help, don’t offer us unsolicited help or care.

I acknowledge my privilege of being a cismale; coming from an upper-middle-class family and I’m aware of my social position in taking up space. We need more disabled people taking up space from various intersections and sharing their experiences to make a more inclusive, accessible and socially aware society.

There aren’t “special needs“, but the discriminatory policies and regressive institutions are inaccessible to people with disabilities and mostly cater to the needs of the able-bodied people. Accessibility is an absolute necessity. It’s not something “extra,” it’s not only about getting through physical spaces but about communications, social media, in availing resources, being able to enjoy your music and so on.

July was the Disability Pride Month and I continue to learn and unlearn so many things about disability from some amazing disabled people online. Every lived experience of disability is important. Inclusion is important.

It’s been quite a journey since I’ve started to embrace my disability from that day in the first year, and I would end by saying, “Disabled people are not inspirational and not there to make able-bodied people good about themselves, and I need no cure. One more thing, stop being extra nice to us.

This article is written by Ananay Koushal, who is a student of St. Stephen’s College of the University of Delhi. You can reach the Convenor of JAF Shameer Rishad on Twitter.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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