Social exclusion in general is a process and condition that hinders the participation of individuals, fully or partially in achieving their basic necessities of life. It is a multidimensional concept and depends on social, economic, political and cultural factors, being dynamic in characteristics, it varies according to time and space. People with disability have continuously been excluded from the mainstream, and when the intersection between disability and gender happens, the exclusion becomes more prominent. In India, presence of different societal and cultural norms have restricted access of reproductive and sexual rights to people with disability.
In every society, something/someone is portrayed as an ‘ideal’ in a particular field. In mythology, religious deities are represented as ideals and human being are supposed to achieve those ideals or at least try to imitate them. Then, those who fail to live up to these prescribed standards to it are either neglected or ostracized from the mainstream.
In India, disability is considered as an aberration with different connotations attached to it; at some places, it is considered as a sin of the past life or the result of the sins of the parents, primarily the mother. The disabled person is considered as a burden and a matter of shame; the presence of a disabled person even leads to ostracisation of the whole family. The other view towards a disabled person is to consider him/her as someone ‘dependent’ who needs assistance and sympathy. Even though all these prevalent views are now being challenged and disability is now being considered as a social construct rather than a difference, the same view is not upheld when it comes to sexuality.
The concept of ‘sexuality’ has been continuously evolving; sexuality broadly encompasses sexual behaviour and other aspects like sexual identity, thoughts, orientation, relationship patterns etc. with respect to an individual.
As per the definition of World Health Organisation (WHO), “Sexuality is a central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors”.
In India, it is defined by society which considers it as a taboo and is usually restricted to sex and related issues like sexual abuse, safe sex, unwanted pregnancy etc.
Moreover, the intersectionality of disability and sexuality is a contentious and somewhat mythical issue. There are different kinds of stigmas attached to both disability and sexuality. The societal perception about the people with disability is to consider them either as over sexual or asexual, incompetent and unfit as a life partner and parent. In case of disabled women, these get attached to them and deprive them from the life of femininity, active sexuality and motherhood.
Gender in India is largely considered as binary rather than fluid, and even within this restricted notion, the patriarchal base of Indian society curtails the freedom of women, especially freedom related to sexuality. They have to follow the rigorous norms of sexuality and for disabled women the condition is worse.
At the intersection of gender and sexuality, disabled women are at the lower rung of a ladder when compared with disabled men. It had led to the stratification of society on the basis of gender and disability, which has influenced the access to sexual and reproductive health differently and has lead to their exclusion in some of the most derogatory ways.
The sexual and reproductive health as per the definition by the United Nation Population Fund is “a state of complete physical, mental and social well being in all matters relating to the reproductive system. It implies that people are able to have a satisfying and safe sex life, have capability to reproduce, and the freedom to decide if, when, and how often to do so.” It covers sexual and gender identity, sexual expression, relationship, and pleasure and it also includes negative consequences related to it, like sexually transmitted diseases, unwanted pregnancy and abortion, sexual violence etc.
For a person with disability leave sexuality, even with respect to sex their desires are considered as uncommon and they are often admonished for it and even ridiculed if they want to become parents. This culturally constructed view places a disabled body outside the domain of sex, while on the flip side of it, the women with disability are the ones who are most vulnerable to sexual abuse.
On attaining puberty, physiology of female undergoes radical changes when compared to male, these natural changes and corresponding change in behaviour is controlled and regulated by increasing isolation from general society and consequently interaction with others, thereby reducing their access to education, employment, network of friends etc which culminates to their reduction in socialisation; even steps like forced hysterectomy has been undertaken by guardians to provide protection from sexual harassment and relief from their menstrual cycle without the consent of the individual , an incidence in Pune, in 1994, where forced hysterectomies were carried out on mentally challenged women with consent of the parents is an example of it .
Marriage or relationship is a highly debated issue. In case of relationship there is absence of privacy; in case of a female it is considered as immoral and she is not allowed to be in a relationship, further the fear of being used and the societal pressure acts as a hindrance. Females are infantilised or are considered not-able to take care of their offspring, the only way a sexual relationship is sanctioned is through marriage, according to census-2011 data on disability shows that only 46.87% of the disabled were currently married whereas a huge percentage i.e. 41.72 % were never married and 10.29 % were widowed.
The data also shows that the percentage of disabled male getting married (62%) are significantly higher than disabled female (54%), while the percentage of disabled-female widowed (13%) is higher than the disabled-male widowed (6%). A disabled male having assets makes it easier for him to marry while for female absence of asset and prevalence of dowry becomes the reason for her not getting married.
Considering the fact that the reproductive health of a woman is most neglected in India, since the MMR rate for all female in India, according to Sample Registration System (2014-16) is 130, which is considerably high, in the context of disability, it presents a gloomy image given that the access to general health care facility for disabled person are not streamlined. The accessibility of reproductive health care services to the disabled people is a grave issue as it affects both the mother and child, the others concern in case of disabled people is related to privacy in explaining their sexual and health related issue to medical professionals as they are usually accompanied everywhere by their relatives.
In India, a woman is usually submissive and disability makes them more submissive as they have to depend on others, this increases the risk related to reproductive health as they are not even considered in decision making process related to the number of children, use of contraceptive and the natal care which she needs. Male with disability are at considerable advantage expressing their desires, getting married and in access to health compared to females.
What are the issues of sexual and reproductive health rights concerning people with disability in India and how much inclusive are they?
The Rights of Person with Disability Act, 2016, is a laudable steps towards ensuring sexual and reproductive health as in section 25 (2) it has been mentioned that it is the responsibility of the concerned government and the local authority to take measures and make schemes related to health care, while section 25(2) (k) mentions about the sexual and reproductive healthcare especially for women with disability. Considering the fact that most of the disabled person reside in rural areas and taking into account the functioning of local authority especially in rural areas, the right has been a distant dream.
The rights in the Rights Of Person With Disability Act, 2016, have some aspects related to “sexual rights” like personal liberty, protection against violence, abuse and exploitation etc, but there is no direct reference to the word as in case of reproductive rights; in the same act in section 10 (1), Government is supposed to ensure that persons with disabilities have access to appropriate information regarding reproductive and family planning measures, but there remains ambiguity about the appropriate information that is to be provided, this has excluded a large number of people from access to relevant information.
The access to sexual and reproductive rights is a major issue in India which includes ambiguity in law related to those rights as pointed above, and others are related to people’s attitude surrounding disabled people restricting them from accessing those rights. At the same time absence of proper infrastructure has been a big hurdle to it, to visualize it, consider a situation of a disabled girl who goes to school or any public space and she is on her menstrual cycle and needs to change her sanitary pad, the absence of trained caretakers in schools and at the same time lack of accessible toilet forces her to drop out the school or stop going out in public spaces which are barriers to her right to education and right to participation in public and political life. In an audit, it has been found that in 500 schools of 16 states, there were less than 60 schools toilets for girls, which means around 440 schools do not have toilets.
The reproductive rights is basically related to having the information and means to decide the number, spacing and timing of children, and the right to attain highest standard of sexual and reproductive health. But the issues revolving around these rights apart from cultural and societal sanctions are related to additional cost of healthcare which includes cost of different equipment dealing with different kinds of disability, limited mobility, attitude of staffs towards the disabled, difficulty in communicating and absence of facilities that increases accessibility of healthcare services – all this have further disabled the disability of the disabled person.
In totality, in India disability and its related concepts have evolved to an extent but when it comes to accessing the reproductive and healthcare facilities the condition is still gloomy, there is a need to create awareness about it across the country. It seems as if a disabled person is not an equal citizen of India as in most of the cases their fundamental rights are being violated as they are not able to access it on par with ‘normal’ citizens. It is high time now that a completely neglected section of society comes forward and demands access to all their rights, so that they can enjoy their life to the full extent. It will require the help of the civil society and the government as well. The prevailing myth around disability and the related exclusion needs to be eliminated.