Disability Social Models – Taking on ‘FULL’ Sensual Lives with ‘HALF’ Sexual Bodies…!!
By Sai Padma Murthy
Disability has been a subject of great interest for many. No wonder there is an increasing curiosity as more and more individuals with disabilities – with ‘deviant’ and half bodies as per societal norms – are actively participating and fulfilling various roles in life. People have many questions about disabled people: What are we? How do we live?
People ask so many questions but there are still many inquiries which they DON’T make. These queries are hidden underneath their body language, their demeanor, and the way they assess our visible disability. Such unasked questions are easily understood by individuals with disabilities. This kind of curiosity and social inquisitiveness towards disability makes all the difference in their daily living, health and perception of men and women. A disabled person contains within himself/herself an environment of care-providers, family members, friends, and supporters. A disabled person depends heavily on them. Most of the learning of a disabled person is through them and they highly influence disability decision-making.
Sometime back I wrote a quote, ‘What You Need to Learn as a Disabled Person – RESPECT YOUR BODY…Listen To Its Shrieks and Shrills and Uffs and Crinkle of Tired Bones…Listen to Its Spoken And Unspoken Syllables…They Are Syllables Of Your Living With Spirit…!!’
But as regards listening to bodies, I always wonder how many persons with disabilities listen to their bodies on a daily basis. How many are in tune with their own thoughts and how many are given a chance to explore life? For a person with disability, sometimes even the acts of successful social model might prove a hindrance to experiencing life to the fullest. Many disabled people suffocate themselves in following the social models, as they believe that such models are necessary to be a contributing member of the society. For example, the expression of heavy gratitude by being a care-receiver creates certain presumptions in disabled person’s minds, as to what is expected of them. Many women with disabilities, who are unmarried, invariably adopt the offsprings of their brothers and sisters as a way of ‘paying back’ for the care they received.
India is a land of paradoxes, multi-layered customs of both acquired and acquiesced perfections. Although most people in the society consider marriage between a disabled person and a non-disabled person as ideal and utopian, the same notion influences disabled persons not to even consider marrying persons with slight disabilities. For example, many disabled men want a care-giver as wife with ‘complete’ body. I still remember a friend saying to another friend (both are wheelchair users), ‘Wish you were not in wheelchair, I would have married you long back. I can’t make my family accept a disabled daughter-in-law.’ Men and women with severe disabilities don’t even count for marriage purposes. Some successful disabled men want only able-bodied wife as they want to prove to the world that they are indeed NORMAL. On the other hand, many deaf-mute women and men often feel that they should marry within the same disability community, as communication would be a problem with others. I worked with a community where persons with speech and hearing challenges strongly believe that they should marry a person with the same disability. They even allowed bigamy and polygamy relations.
Here I want to elicit the most common social models that act as hindrance to Disability Expression and Full participation in a peaceful life.
Love Towards the Opposite Sex
Love is a natural feeling. There is nothing uncommon about it. But in the case of the Indian disabled, it’s always layered with taboos. In Indian context, love is more or less associated with perfect body. Many disabled men and women suffer for the lack of access to love. I interact with many disabled men and women in India on a daily basis and I understand that they are left with few choices and hence have to make a lot of compromises in love. Society doesn’t give them an opportunity to explore love. They themselves feel they are inferior in terms of body and always make hasty decisions in choosing their soul-mate. The haste for love and the acceptance from outside will make persons with disabilities a weak decision-maker. Due to lack of societal acceptance, they are more withdrawn into their own physical and mental self. People with visible impairments, who do not conform to stereotypes of beauty – because of drooling, dwarfs, or any such visible problems – are often treated as asexual by their immediate environment. A woman I have interviewed and who is an albino, told me: ‘Because I have this visible problem of skin, from childhood my father used to tell me, no one will come to marry you. You better focus on your career.’ These negative vibes leave an unwanted mark on the psyche of the individual.
Social Models of Marriage
Marriage is an approved institution for leading a life of togetherness with the opposite sex. It combines economic, social and other models into one unit for family’s prosperity into the next generation. The same basis, on which a normal person dreams of marriage, acts as an obstacle to persons with disability. Social conditioning about perfection in marriage works as a base for many marriages and having a physical and visible disability limits choices in a marriage. Marriage is the last choice or option for the disabled. Adults with disabilities are treated as children, and the primary decisions in their life are taken by their care-providers. A woman with severe gait problem is always treated as a child. ‘Drooling happens not just in children, I want to shriek’, says a woman with cerebral palsy. When I ask many women with disabilities what’s the most frustrating question they ever encountered, the most common response is: ‘Is marriage necessary for YOU? MARRIAGE IS RISKY FOR WOMEN WITH DISABILITY.’ This question from close care-givers and immediate environment has ruined many lives and the quality of their decision-making.
Many men and some women with disabilities, whom I have interviewed, don’t want to marry a person with disability. Even in a marriage between two disabled persons, the level of disability and visibility plays a huge role in social rituals. A woman was asked to keep aside her mobility aids during the marriage rituals so that they don’t look ‘odd and out of place’ in the function. In the Indian scenario, marriage is not easy for disabled men, too, as sometimes they marry immediately when they get government jobs, and some want to marry from orphanages, while some suffer after marriage due to incompatibility. In the case of a visually challenged man, a bride left the groom, citing that she never expected the level of his disability would be so severe. Incidents like these leave people with disabilities with little faith in marriage as an institution of trust and love.
Sex and Sex Education
Sex and sex education are just words clinically spoken in conferences and workshops in India. Still there are so many apprehensions about sex in the minds of the persons with disabilities and their families. The sexual rights of persons with disabilities are often treated as unusual and unnatural by their immediate environment. The media portrayal of sexuality of the disabled hasn’t changed much, only it is upgraded from showing disabled as comic characters to sex-starved human beings. These deep-rooted myths and misconceptions are jeopardizing lives of several disabled women, who end up in abusive relationships. Several disabled teenage girls are victims of abusive relationships with boyfriends and close friends.
With lack of information and proper education in place, the transition from childhood to adulthood seems to be NORMAL. But there are so many associated problems and concerns about the same. Sex is still a taboo. Further sexual frustrations and health problems accentuate the severity of the issue. Marriage is the only option for persons with disability to have sex. Several women I have interviewed opined that for them, sex is painful because they are disabled and they don’t want to get married as they are unaware of their bodies and its functions. For several couples, sex is a problem due to frigidity and pre-mature ejaculation and they attribute every common problem regarding sex to disability. Disability tiredness in sex is an issue which is rarely discussed. People are not even aware of its consequences (whether it is beneficial or hazardous).
Well, what I have discussed above is just the tip of the ice-berg. The problems are multi-dimensional and multi-layered. I have collected the above information from different parts of the country with different cultures and customs. But basic question is:
WHEN WILL SOCIETY TREAT US AS WE ARE? WHO IS NORMAL ANYWAY???
Awaiting your responses on this article!
[Sai Padma Murthy is a polio survivor with 70 per cent disability. She is a disability activist and has gained experience in the management of Not-for-Profit organization that focuses on health and education in the coastal rural, tribal, and semi-urban communities. She administered and monitored Pratham, Home & Community based care and support, child labor school, Urban Health Center, Andhra Pradesh AIDS Control Society Projects and also worked for the management of persons with disabilities. She is instrumental in the conceptualization and establishment of boys’ and girls’ hostel in rural area and 6 tribal support schools in hamlets. She has been serving as an executive trustee of LFWPT handling project, in the legal and finance areas. She is the Founder-President of Global AID ( http://www.globalaid.in), a registered organization that aims to bring change in the lives of persons with disabilities facilitating Mobility, Accessibility, Employability and Sustainability. She is a writer/singer/fund-raiser for causes. Her articles on areas of disability in India were published in ILO journal, India Disability journal, Indian Women Online etc. A short collection of her poetry titled LIFE was published. She graduated in commerce and law. She is in the process of completing M.B.A. Finance and CA Final. She lives in an accessible home that stands as a model home in Visakhapatnam, India. She is married to Mr. Pragnanand Busi, a Development Professional and a Human rights activist.]