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

Posted on June 15, 2016 in Disability Rights

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.

abha khetarpal
Shared on Facebook by Abha Khetarpal.

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.”