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Interview – Abha Khetarpal

Abha Khetarpal is a disability rights activist and self-advocate, writer, motivational speaker, and President of Cross the Hurdles, a resource centre for online counselling, information, education and mentoring, focussing on issues of disability. Abha has lived experience of mobility issues and the challenges that arise as a consequence. On the subject of dating, Abha says “ I never believed in hiding that I am a person with a disability, but many men even hid their marital status. I have always believed that visible disability in one way or the other helps in filtering out negative people from our lives. So the way a person reacted to me shed light on what kind of person he was. Though many times rejection was painful, but rejection can happen to anyone.”

Shikha Aleya (SA): Many thanks Abha, for agreeing to be interviewed on the subject of dating and sexuality. To begin, please share some part of your life story with us.

Abha Khetarpal (AK): It’s my pleasure to be here on In Plainspeak. I love to share my personal experiences as it creates and strengthens the resilience in me.

I was three when I got polio. The initial infection was so severe that I even lost my voice! Life after that involved a never-ending process of facing challenges and continuous development of management strategies to face those challenges. It was a matter of my survival and I thus became the most important project of my parents’ life, and my rehabilitation became their foremost goal. Though financially not very strong, they took me to the best hospitals and best doctors in the field.

I literally became a piece of bio-medical-engineering with many surgeries to straighten the curve of my spine, nail to straighten the little toe of my left foot, construction of a pulley to transfer tendons in the fingers of my right hand. Leg braces to walk, splints on my legs while sleeping, kneecap to stabilize my knee, crutches, walker, wheelchair etc. These things have remained a part of my being during different phases of my life.

Fortunately my education never took a back seat. After home-schooling for 10 years, I attended regular school from 9thstandard onwards. I completed my university education through distance mode and got three masters degrees. Though I had always dreamed of joining the Civil Services, the lack of accessible facilities available during those days stopped me from fulfilling my dream. I got absorbed in the teaching work at my father’s coaching centre and thus became financially independent. But as a person with disability I could understand how different I was from my non-disabled peers. I never had the chance to go out partying with my friends. I did not go shopping for my clothes, never went to the movies, never even thought about my likes and dislikes. For everyone I was a ‘good girl’, compliant, ‘more mentally mature than my age’.  Without friends, and being ‘daddy’s good girl’, I had well adjusted to the life that I had fought for just to survive. Now I realize that in reality I was undergoing ‘duck syndrome’. On the surface level I was effortlessly gliding across the rough waters of life but below the surface I was ferociously paddling to maintain the superficial graceful appearance.  Calm on the surface level while in reality frantically trying to keep up with the demands of life especially on the emotional front. I could only overcome anxiety and depression when I decided to find meaning in my life.

I established Cross the Hurdles, an organization that aims to provide online counselling for persons with disabilities. After that there was no looking back.  I worked on many ideas; the first mobile application for persons with disabilities, providing information they require, a mentoring program for women with disabilities, online classes for students with disabilities who are unable to go to regular schools. I developed self-paced courses for persons with disabilities on Comprehensive Sexuality Education and also a manual on Sexual and Reproductive Health and Rights of Women with Disabilities. I got a National Award from the President of India in 2016 for my contribution to the disability sector. Last year, that is in 2019, I was honoured to receive the Henry Viscardi Achievement Award from the USA and became the first woman from India to get this award.

On the personal front, life was still a roller coaster, with my parents aging, my father bedridden with Parkinson’s Disease, and my own role reversal to become their caregiver. With my limited physical resources things were quite difficult to handle.

Social media and technology came to rescue me from my loneliness and social isolation. I had no friends and no one to share my feelings. I wanted someone who could understand me, love me and accept me as I am. I made a lot of friends online on various platforms and had various kinds of experiences with different kinds of men. Some were out on the Internet just for fun and extra spice in their lives. Some had bad marriages and were looking for an emotional connection. Some were simply bored of their spouses. It’s a long list of such like. I even met some men who had an attraction to people with disabilities. I take all this as a part of my learning process.

Then, later, I met someone, we became good friends and after three years of courtship we got married.

SA: Thank you for sharing your experiences with us. Abha, do you remember when you first came across the concept of dating? How did you understand it then and how do you see it now?

AK: Though I can’t exactly remember when I came across the concept of dating, Bollywood movies and songs on the old black and white television had been my major source of entertainment since childhood. In the movies, I used to see young couples singing and dancing in public parks and spending time together. It was during my senior school years that I really came to know what dating is, because my class-mates used to discuss their dates. I heard about Valentine’s Day for the first time when I was 18. To me it meant going out and being with someone that you loved and who you can be intimate with, and then getting married to the same person. Dating only meant having a first sexual encounter, rather than being a part of a process of socialisation. With all the overactive hormones everything seemed very thrilling and dreamlike, but at the same time I, somewhere in my heart, was aware of the reality that all this was not for me.

Now if I sit back and think I might have internalised the messages that I received from the environment. Silent and subtle messages from all around somewhat conditioned my mind, so that I felt I must not think about desire, intimacy, love or sexuality.  The all-important for me was my education and physical rehabilitation. Even my friends did not confide the details of their experiences to me. The boys in my class never made any a pass at me. Perhaps they did not find me attractive in the ‘conventional sense’. I was not a part of such conversations among friends and cousins. Frankly speaking I faced exclusion due to a silent and subtle rejection of me.

As time passed I got a clearer understanding of the whole concept. A certain kind of vacuum had filled my heart. I had no companion. But then, technology proved to be a blessing for me. With the advent of social media, chat groups, dating apps, a whole new world opened out for me.

Online dating ranges from feeling a sense of companionship to shared activities with a person whom we may feel sexually attracted to. It is a great opportunity not only to explore, or learn about sexuality, but also to establish meaningful relationships. Not only people with disabilities, but also non-disabled people may find more potential partners of any orientation or lifestyle than they could find offline.

The situation here too remained unchanged for me for some time. Even during online encounters I could not leave my wheelchair out of my dating profile. I never believed in hiding that I am a person with a disability, but many men even hid their marital status. I have always believed that visible disability in one way or the other helps in filtering out negative people from our lives. So the way a person reacted to me shed light on what kind of person he was. Though many times rejection was painful, but rejection can happen to anyone. I have never wanted to use my disability as a method for finding the right partner. I believed in my intelligence, sense of humour, my smile, my confidence, my sexual self-esteem, my positive approach towards life, my emotional stability. These were more visible than my disability. And I was successful in getting a companion who fell in love with me and became my life partner.

SA: Abha, in your experience, how does disability influence or impact sexuality?

AK: Sexuality is a term that has diverse meanings. It keeps on changing at different times and in different situations. Neither sexuality nor disability can define a person. Certain disabling conditions may lead to issues in the areas of desire, arousal, orgasm, or  physical discomfort and pain during certain sexual activities. There can be sexual difficulties arising from direct trauma to the genital area due to accident or disease, spinal cord injury, or an illness like cancer. There can be changes in sexual expression –  the way we engage in sexual activities and even the ways in which we communicate and present ourselves to others, and to our partners may change. These changes may also include the way we express our sexual thoughts, feelings, desires, and fantasies.

It is the way that non-disabled people perceive disability that makes us appear to be non sexual. Deformities, scars, assistive devices, spasticity remain outside the ambit of conventional standards of beauty. The stereotypical norms of beauty propagated by popular media exclude disabled bodies which may not be symmetrical and proportionate and are thus considered non sexual. Persons with disabilities are bombarded with such messages from everywhere and develop a negative body image. Body image is a significant dimension of sexuality.

This happened with me in my younger years. I had to wear a spinal brace attached to my leg braces. My whole body used to be bolted inside a metallic cage. The clothes that I wore had to be loosened in order to fit over the brace. You can very well imagine how a girl would feel about her sexuality in that scenario. She would then be an object of pity only. I did not let an inferiority complex engulf me, but yes I started avoiding socialising. Gradually I reclaimed my sexuality which had got hidden somewhere under all the negativity.

When I entered into a relationship with the person who is now my husband, I could feel that he’s with me not because of my disability or in spite of it. He dated me because he liked me. My disability and my wheelchair were never a problem for him.

SA: In an interview available online, you have spoken of your husband and said that, “Before we got married, we never dated”. Please share the pressures you felt then and tell us, do you think the situation has changed for other young people with disabilities, in the five years since that time?

AK: Initially the decision to date seemed to be emotionally risky. It also became a daunting task because of various barriers coming our way. Physical inaccessibility of places, permission from the family, social pressures coming from friends and relatives, made it all the more difficult. As I have said before, when asked this question, if somehow we found an accessible place like shopping malls or public parks, the blatant stares of people made us feel guilty or as if we were out there committing some crime. Many times my husband was regarded as my brother or my caregiver. How could a woman in a wheelchair be out in public places with her boyfriend!? How could she be involved in a romantic relationship or how could a non-disabled man be in love with a woman who uses a wheelchair!?  We literally had to steal time and opportunity to spend even few hours together. For me going out every week with a male friend was difficult to be accepted by the family. He was also seen as a suspicious character who would take advantage of my vulnerability.

Mostly we used to just go for long drives and sit in the car where we could hold hands or I could at least put my head on his shoulder!

It is good to see some positive changes now. With the growing accessibility of educational institutions and public places youth with disabilities are going out more often and their visibility is increasing. They themselves have become bolder and are now more aware of their rights.

SA: Yes that’s interesting and a positive change. Abha, in the current situation with the #covid19 pandemic and #socialdistancing you have spoken online of #lockdown  saying that this has “impacted the disabled community, including me, in various different ways — physically, mentally, emotionally and also financially”. In the context of dating and relationships, please share some tips and insights on emotional and mental care at this time.

AK: These are tough times. Many types of disabilities put us in a ‘high risk category’ for the infection. It is natural that as a disabled woman, I feel more insecure about what would happen if I fall prey to the virus. Fear, loneliness and apprehensions of many kinds sometimes make me feel stressed out.

Rather than sinking into the quagmire of depression, I am utilizing these days to learn new things. Technology has empowered us so much that we can all do that. Being creative and staying connected is the mantra these days. Also I think this as an opportunity to build stronger relationships.  If we are living together, then shared activities with our partner, such as watching movies, singing each other’s favourite songs, cooking together, these things can be sexy. A simple flirtatious teasing  has the power to stimulate oxytocin (love hormone) in our brain. It is just that we need to be adept in effective communication with each other. Even if we are in a long distance relationship, all this can be done on different sides of the screen along with engaging in sexting to keep the flame alive!

I have spent all my life in my home because of mobility restrictions and inaccessibility of places so this #lockdown is just a small step beyond  what I have undergone my whole life. I am proud to say that I have conditioned myself emotionally and am able to deal with this.

SA: Thank you for your candid responses Abha! One last question. What is needed to make this space of dating and relationships a positive, sexuality affirming, inclusive and safe space for everyone, online and in the physical world?

AK: We are all sexual beings and have the right to express our sexuality, right to love and to be loved, to desire and to be desirable, irrespective of disability, color, sexual orientation or economic status. The right to privacy is a basic human right and must not be encroached upon.

As a first thought, the removal of physical barriers and improved accessibility may ensure greater visibility of persons with disabilities in public places.

When we talk about creating a safe, inclusive, sexuality affirming space for dating and relationships, we need to learn about consent and the skill of decision making. And a word of caution on online dating: there are many out there waiting to pounce upon a person who is vulnerable. Be careful about wearing your heart on your sleeve unless you are absolutely sure of someone.

Education is a pre-requisite to creating safe spaces. I am not talking about formal university degrees, though if we can get them it would be much better. By education I mean to say that we must be well informed and must learn decision-making strategies. Persons with disabilities must have access to age appropriate comprehensive sexuality education. We need to know our rights and our duties. We need to not play the role of a victim. The more we indulge in self pity, the greater is the risk of getting exploited. We tend to see ourselves as controlled by chance. We regard others as powerful and stand there as hapless victims of destiny. Because of emotional loneliness we might then become ready to compromise at any level. Our mental state pushes us to take what we get.

Practicing self-advocacy is essential for persons with disabilities, especially women, and self-love is imperative. Unless we love and accept our own self we can’t make others accept us. Get ready even if you are not going out or if nobody is there to compliment you. Wear your favorite colour, wear your favorite lipstick just for yourself. Feel beautiful. Feel confident. Feel sexual.

Cover Image: Author

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Article written by:

Reads, writes, does Sudoku, grows plants and walks with dogs as a reasonable option to running with wolves. Is a consultant with TARSHI, focusing on health, disability, gender and rights issues. A post-graduate from XLRI, graduated from Hindu college, Delhi University.

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