Abha Khetarpal: An Introduction
Abha Khetarpal is the President of Cross the Hurdles – a disability rights organization based in New Delhi, India. She is the winner of numerous prestigious awards including NCPEDP Mphasis Universal Design Award 2015, National Award for Role Model 2016 and Henry Viscardi Achievement Award 2019. Ms. Khetarpal is well-known for her work on sexuality and disability. She was one of the four protagonist in the 61st National Award winning documentary Accsex.
The WeCapable Team met Ms. Khetarpal to bring you her thoughts on a variety of topics.
WeCapable: Do you mind sharing the type and nature of your disability? How does your disability affect your daily life?
Abha Khetarpal: I had polio when I was three that left me more than 80% disabled. All my four limbs and spine got impacted. Because of muscle power and mobility impairment, I use a wheelchair for movement, certain other assistive devices like a pick up tool for picking things from the floor and bringing my wheelchair near me (if kept at a distance), Google Home and smart devices like smart fan, smart light etc. So, many essential chores of daily life do not get stuck because of my disability but yes, I still need an attendant for many things. But I would not mince words here. Daily life, as compared to the persons without disabilities, not in any negative sense, is absolutely different because of disability.
WeCapable: How do you see your disability? Do you think your disability has shaped your personality the way it is?
Abha Khetarpal: I would be a hypocrite if I say that God has chosen me for testing my endurance or I might have been chosen for some ‘greater good’. Let us put this in simple terms; my disability has made my entire life really very hard! But I won’t also deny the fact that I don’t see this as a disadvantage. Difficult doesn’t mean disadvantageous. Though the ride has been bumpy, it is worth it. What I have done with my disability I would not have even thought of doing it without it. Having navigated through a completely inaccessible system has made me tough, a different kind of commando training I may say. A do or die attitude has never made me procrastinate. I have developed problem solving and managerial skills. If I sit and introspect I feel that my disability has made me a Type A Personality. In order to prove my self-worth I have developed a need to win at everything, from work to relationships, even though these activities aren’t inherently competitive.
WeCapable: What are the most annoying questions you have been asked by people curious about your condition?
Abha Khetarpal: There is a long list; Why don’t you exercise to lose some weight? Why have you stopped walking? (since they are totally unaware or uneducated about post polio syndrome and my actual physical condition). One year after my marriage many were curious to know when we were going to have a baby and to some extent even preached to plan as soon as we could without even trying to understand its implications on my physical health at this age. Unsolicited advice and nonsensical comments sometimes become more stressful than my disability.
WeCapable: It is said that girls/women with disabilities are at double disadvantage. What does your experience say?
Abha Khetarpal: Women with disabilities face not only double discrimination but triple discrimination. They are discriminated against on the basis of their gender, disability and are most likely to live in poverty. Being a woman with a disability I myself have confronted varied kinds of challenges. Had I been a man with a disability, I feel I would have attended regular colleges, or enjoyed vacations or stayed independently. Girls and women with disabilities are always at higher risk of gender-based violence, sexual abuse, neglect, maltreatment and exploitation. I live in a society that places great importance on youth and beauty, it has not been easy to be a woman with a disability. Their sexuality is viewed quite differently in relation to men with disabilities. Women with disabilities are victims of over-protection and in so doing their families prevent them from leading a normal life.
WeCapable: Infrastructural Barrier (lack of accessible infrastructure like ramps and braille signs), Attitudinal Barrier (biased behavior of people around you), Societal Barrier (negative attitude of the society as a whole). How will you rate the three barriers with respect to their impact on your life?
What I feel is that the barriers that persons with disabilities confront on a daily basis are all mutually inclusive. The barriers that you have mentioned do not exist independently. These barriers should not be and cannot be seen in isolation. Sometimes they even overlap each other. Many times they share a cause and effect relationship. Infrastructural barriers are experienced because the world in which we navigate is designed and developed for and developed by persons without disabilities. Attitudinal barriers are the consequence of an ableist mindset. As a result we remain invisible to the world, our need for accessibility remains hidden as well as unmet and the vicious circle goes on. Frankly speaking, if you ask me I can’t rate them. If we, as society, as a country and as a culture want to break this vicious circle, we would have to work on removing these barriers simultaneously.
WeCapable: What, according to you, is the biggest loss you might have suffered due to your disability?
Abha Khetarpal: Autonomy, independence, participation and social integration are key concepts for everyone, but it was difficult for me to achieve all this because of my disability. And the biggest loss that I feel is the loss of autonomy and independent living.
WeCapable: With regard to Post Polio Syndrome, what concerns do you have for the future?
Abha Khetarpal: Let me first tell the readers here that post-polio syndrome refers to a cluster of potentially disabling signs and symptoms that appear decades — an average of 30 to 40 years — after the initial polio illness. Since polio has almost been eradicated, even the medical professionals also do not know much about it, leave aside the common man. I too am going through Post Polio Syndrome at present with increased muscle weakness, feeling of fatigue all the time, sleeplessness, progressive joint pain and all. Since the symptoms are progressive, I am really worried about my condition, I try to conserve my energy as much as possible. I am very much apprehensive of my deteriorating strength in years to come. Lack of research in this area in our country along with almost negligible awareness about it is really a matter of concern for thousands of polio survivors in our country.
WeCapable: You have done some work on disability and sexuality as well. What are the major points that you learnt on this subject?
Abha Khetarpal: I can write a book on what all I have learnt, not only regarding the subject matter but also regarding how people think and are forced to remain silent on this. Persons with disabilities have the same needs and desires as those without disabilities. They want a partner, a companion, a friend. They want to love and be loved. They do not only want to know the mechanics of sex but they need validation that they too are sexual beings. They are mostly ignorant about contraception and kinds of contraception to use, have learnt the importance of consent and even sometimes cannot understand they are being exploited and taken advantage of. They need to be given information in accessible formats regarding to maintain their sexual and reproductive health.
WeCapable: Have you tried reading and understanding about your condition?
Abha Khetarpal: Yes I have read and researched every available journal and article on the internet regarding polio and post polio syndrome.
WeCapable: If you are given the charge of the Department of Disability Affairs, Government of India. What would be the one most important practical change that you would want to bring about?
Abha Khetarpal: Ah! What a great responsibility! There are so many things to change! But if you ask me the one most important practical and feasible change that I would like to bring about is to make sure that the staff members, officials, even the Secretary and the Joint Secretaries get compulsory training in disability issues, disability rights and disability etiquette. Such internal training is especially more significant for those coming from different departments as they do not have even the slightest idea of the issues faced by 15% of the country’s population.
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