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Working With People With Disabilities, I Realised How Inaccessible Our Society Is

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In July 2019, I attended a workshop conducted by Javed Abidi Foundation (JAF) on disability rights. I felt like a huge bubble that I was living in had just been popped through this workshop, as until then I had been completely oblivious to the ‘invisible minority’, i.e. people with disabilities and how they lead their lives.

Group photo of RTI workshop conducted by JAF in Bangalore, in partnership with CHRI & DRIF
Group photo of RTI workshop conducted by JAF in Bangalore, in partnership with CHRI & DRIF. Image provided by the author.

The Right to Information (RTI) Act of 2005 is a great tool to hold people in power responsible for their duties, and to begin a journey of advocacy. I, along with other participants who were predominantly from the disabled community, learnt how to draft and file RTI applications on different issues, analyse the response, and further take steps to advocate change so that the issues faced by persons with disabilities can be reconciled.

By working with people with disabilities, I realized how inaccessible the society I lived in was. A majority of the conversations about movies, news, art, websites, built environment, and something as basic as the entrance into a park, are inaccessible to people with disabilities, in one form or the other.

In order to draft RTIs, I was tasked to hold meetings with a cross-disability group. For this, as an organiser, I needed to ensure that the locations were wheelchair-accessible and easy to get to for people with orthopaedic disabilities, and further, to make the meeting completely accessible and inclusive, a sign language interpreter was present.

Sign language interpreters are just as important to a deaf person as a cane or screen readers are to the blind or ramps to wheelchair users. When there isn’t an ISL interpreter they would have to resort to lip-reading, only catching bits and pieces of the conversation around them or just straight up being completely left out.

Samah and a Sign Language interpreter working together to draft RTI applications with a group of people with disabilities
Samah and a Sign Language interpreter working together to draft RTI applications with a group of people with disabilities. Image provided by the author.

Before 1995, until the signing of the Proclamation of Equality and Full Participation of People with Disabilities in the Asian and Pacific Region and the Persons With Disabilities (PWD) Act was enacted by Parliament, people with disabilities were not treated like human beings.

To quote an article by Martand Jha that traces the history of India’s disability rights movement – “Most of these people were either seen as beggars or in better cases they were associated with the field of music. Even the system thought of them as a liability; these people were considered to be of little use to society and hence their concerns were severely disregarded. Many people thought of disability as the result of someone’s previous life’s sins and thus held them responsible for their present condition. This absurdity led to various forms of injustices in India.”

The next big step in the Disability Rights movement was when the Indian parliament passed the Rights of Persons with Disabilities Act (RPWD) of 2016. The Act stands as a powerful tool to ensure the rights of persons with disabilities are met and they can live a life of dignity with equal access to opportunities and replaced the PWD Act, 1995. It has provisions relating to accessibility, reservations and protection while seeking to empower persons with disabilities. Like the RTI Act, the RPWD act also helps in advocacy measures.

The movement to establish the rights of persons with disabilities has been ongoing for over 40 years. It is baffling that they are still not treated or seen as equals in our country and as a person without a disability, I too in the past have contributed to the community’s invisibleness. Until I was sensitized, these issues were never a part of my understanding.

Samah and a Sign Language interpreter working together to draft RTI applications with a group of people with disabilities
Samah and a Sign Language interpreter working together to draft RTI applications with a group of people with disabilities. Image provided by the author.

A WHO report says that there are 15% of people with disabilities in India. Disability rights activists also say that 10% to 15% of the Indian population is disabled. But, since the Census data says 2.21% of people constitute people with disabilities in India, the government does not seem to take the disabled community seriously. We choose not to see people with disabilities.

Also, since they are one of the most marginalized section of society they are never in the circles that we have our interactions in and really drives home the point as to why we only see a few persons with disabilities out and about in our daily lives. Some of the factors leading to this are discrimination at the workplace, unequal employment opportunities, no access to education, lack of accessible surroundings, and the ableist society we are a part of.

Today, in these trying times of a global pandemic, people with disabilities are left out yet again. Through the meetings held by JAF with various people with disabilities a lot of issues they were facing have come to light. To name a few issues, beginning with the information that was circulated about COVID-19 back in March being inaccessible to them, caregivers not being provided with passes during the long periods of complete lockdowns which left the persons receiving care completely at their own mercy.

The news given by the PM was not interpreted in sign language except for in one channel which had an extremely small display of the sign language interpretation. Online classes are still non-inclusive. For example, notes were not provided in accessible formats. PWDs were further not given preference at grocery stores and ill-treated.

JAF had launched a webinar series which started in April. It focused on issues of Taking Stock of Disability Rights Advocacy in India & Steps Ahead, Disability Perspective on Art and Poetry as tools of Advocacy, Data and Disability,  The Role of Youth as Key Stakeholders,  Political Participation and Accessible Elections, The Meaning of Accessibility: Then and Now, Using Media and Social Media to do Effective Advocacy, Grassroots Perspective on Disability Rights covered by exceptional speakers like Rama Krishnamachari, Nipun Malhotra, Abhishek Anicca, Dr Malvika Iyer, and so many others. Their stories were truly inspiring and yet again, an eye-opener.

I used to be apprehensive about approaching and talking to people with disabilities but only by doing so, I have broken this barrier that I had as a person without a disability. We need to understand disability as a part of human diversity. As diverse individuals, it is true that they do face a lot of barriers.

Many of these barriers are due to the perceptions and attitudes of society and the physical inaccessible environment. I feel that rather than turning away from them or ‘outcasting’ them we need to be more inclusive. Society needs to value people with disability and start perceiving them as a human resource capable of doing both ordinary and extraordinary things.

A person in a wheel chair in front of an inaccessible entryway.
Representational image.

Some small steps that we can do to be more mindful, are, for example, when attending a webinar let’s ask ourselves, is there a sign language interpreter available? or are there transcriptions being provided? Does the movie I’m currently watching have subtitles? Does my college/institution have a ramp? Do my online classes have a sign language interpreter and are the notes being distributed in accessible formats?

I’m still on the path of being sensitized and learning how to further support the movement, and there is a lot that I still don’t know but hope to learn and bring awareness to in the coming years.

This article is written by JAF volunteer Ayesha Samah, who is a student of fine arts. 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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