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Polio Struck Me When I Was 3 But I Refused To See It As A ‘Disadvantage’

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By Abha Khetarpal:

Whenever our lives are spoken of, disability is often interpreted as a ‘limitation’ in our culture and society. But I refused to accept it as a disadvantage. I was determined that the story of my life would never be presented in a distorted fashion, either through bizarre portrayal of a girl who always had tears rolling down her face and pain lurking in her eyes, instilling pity or monster-like anger, arising out of the frustration of being dependent or full of super-human feats, pressing the society to call us ‘divyang’. I wanted to give a human angle to the story of my life.

I was a healthy baby, almost eight pounds in weight when I was born and achieved all the age-related developmental milestones like any other child till the age of three. When I was three, polio virus struck me. And now the road to achieving the milestones became a rough bumpy ride dotted with hurdles of all kinds. My resilience had invariably come to my rescue at every step and, like a rubber ball, I always bounced back from adversity.

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I was more ‘systemically’ challenged as I suffered more due to the lacunae in our social and political systems rather than being ‘physically challenged’, a euphemism that is often used to describe persons with disability. Whether it was higher education or healthcare facilities, the systemic and social barriers, repeatedly, made me all the more disabled. I had to outsmart and out manoeuvre the norms of ‘perfection’, independence and speed. I believe in Darwinism, that is the survival of the fittest and showed the world that I was enabled enough to survive in a not-so-hospitable system.

My father started the Beti Bachao Beti Padhao’ campaign 40 years back in real terms. It was not only a tag line or slogan for him. My parents wanted to me study as much as I wanted. But schools were not friendly and inclusive. After being home-schooled till Class 8, I managed to attend a regular school for four years. After that, all my university education was done through distance mode. My education has proved a ‘brahmastra’ (weapon created by God to fight evil) for me. I am a proud possessor of three masters’ degrees i.e. Master’s in Economics, Master’s in English and Master’s in Psychotherapy & Counselling. Broadening my mental horizons, it has become the foothold of my career.

In my opinion, financial independence brings totality to every other form of rehabilitative process for a person with disability. I started teaching at my parents’ tutorial centre. After some time, there crept in a kind of uneasiness. I felt stagnated. I had to do something more.

This led to the conception of Cross The Hurdles in 2010. It was the first-ever online counselling website catering only to the needs of persons with disabilities. Apart from this I framed it as an information resource and a community-based website. Soon it picked up. It was free, and above all the services were accessible for them. The idea behind it was that online therapy overcomes barriers that may preclude others from seeking therapy. Individuals residing in rural or remote areas where there are no counselling services could benefit from it. Those who were unable to leave their homes or their caregivers easily access my services with little inconvenience.

Though the concept was newer in our country, I started offering therapeutic email exchanges, telephone sessions and video-chat sessions, which are conducted via secure and encrypted technology ensuring privacy and confidentiality. I was glad to find that it worked and I was successful in bringing many of them out of their shells and made aware of their own strengths. I am of the opinion that text-based self-disclosure induces a high degree of intimacy and honesty. All this brought better emotional healing in them. I do not charge money so it proves cost-effective for them. With the promise of anonymity, I am able to make them discuss more important, personal issues in a therapeutic relationship online quickly. This reduces their fear of social stigma and prompts them to ask for assistance when they might otherwise have hesitated on issues like sexuality, body image and sex education. I also launched the first-ever mobile application for the persons with disabilities by the name of Cross the Hurdles. The application is a one-stop shop with all the information for persons with disabilities.

I am a woman, who has navigated her way through the inaccessible system and survived. Being a woman with disability, I realised how much this sub-section within the disability sector was doubly marginalised. They miserably lack appropriate education, sexual and reproductive health, and healthcare facilities.

For instance, there is not a single wheelchair-friendly mammogram machine even in the capital city of our country, forget smaller towns. I have written two handbooks for them; ‘Keeping You Abreast’, which is on breast cancer self-examination and awareness and ‘Going With The Flow’ on Menstrual Management and Hygiene. I want to kick-start a new kind of feminism where we all can find an opportunity and feel obligated to take other women with us through the door.

I have taken hold of my personal power, which was a huge challenge for someone like me since birth, and being a strong and committed disability advocate is one of my most enriching roles. I have learned to use my voice, not only as my first line of defence but also want to be the voice for people who have not ever been heard. My never-ending fight for inclusion and accessibility still goes on.

I must insist that our community requires looking deeply into its beliefs towards the capabilities of persons with disabilities. When we talk of ‘Make In India’, we must, at least, consider the making of accessible toilets for us. When we talk of skill development, we must keep in view, the labour market demands and kind of training imparted to disabled youth. When we talk of ‘Start Up India’, we must start believing the power of diversity and inclusion. When we talk ‘smart cities’, we must consider making our cities smarter enough to give us our right to movement and leisure.

All I want to say is encapsulated in this one line: “Give us accessibility and we shall give you productivity.”

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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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