“A significant group of adolescents and youth with disabilities are not able to access programmes targeting sexuality and reproductive health because they do not address the specific concerns of this socially marginalised group. In order to ensure that all citizens of the country are guaranteed the right to health, it is imperative that the concerns of youth with disabilities are mainstreamed into government health and population policies,” says Dr. Renu Addlakha, Fellow for Leadership Development,MacArthur Foundation in India, in conversation with Dr. Meenu Bhambhani and Parvinder Singh.
1) Please tell us about yourself and your area of research?
I am a health social scientist with a doctoral degree in medical sociology from Delhi University. My doctoral dissertation, currently under print, was on mental disability in India. For the past two years, I have been engaged in research on sexuality of adolescents and youth with disabilities in Delhi. This project was supported by a grant under the Programme for Leadership Development of the MacArthur Foundation in India. My project examined the perceptions of sexual identity of young persons with physical disabilities studying in special and mainstream schools and colleges in Delhi. I also produced a life skills manual addressing the sexual and reproductive health needs of young people with physical disabilities.
2) How is sexuality perceived in our society?
Sexuality, especially of young persons, is considered socially threatening more in need of control than encouragement and enhancement. Such issues as sexual expression, sexual intimacy, procreation and contraception are highly emotionally charged and difficult to address. There is also the assumption among adults that sexuality education will arouse insatiable aspirations, lead to over-stimulation and uncontrollable, irresponsible sexual behaviour. Again, professionals are not immune to cultural assumptions, myths and stereotypes; and some of us may feel resistant to imparting sexuality-related information and counselling to youth with disabilities.
3) Why are people with disabilities more vulnerable to abuse?
Abuse is not just about assault, molestation and rape. Although perhaps the most prevalent form of abuse, sexual abuse is only one type of abuse, In addition, neglect, physical abuse (being beaten, kicked or deprived of food and water) and emotional abuse (abandonment and rejection, torment) are other forms of abuse to which persons with disabilities, especially women with disabilities are more vulnerable. Ironically at one level, women with disabilities are perceived to be asexual, yet they are at much greater risk of being sexually abused than other women. This makes sense if abuse is seen more about power than sex. Offenders generally do not violate persons who are well respected or equal to them. Consequently, it is not the disability per se which renders persons with disabilities more vulnerable to abuse but the negative social perceptions and stigmatization, which reduce them to positions of powerlessness and dependence.
4) How important is it for the Government and civil society to re-orient their approach to the issue of sexuality and reproductive health to address issue of disabled?
Approximately 10 per cent of the world's population has some or the other form of disability. The Government of India and NGO sector are implementing a large number of programmes targeting sexuality and reproductive health of adolescents through out the country. A significant group of adolescents and youth with disabilities are not able to access these programmes because they do not address the specific concerns of this socially marginalised group. In order to ensure that all citizens of the country are guaranteed the right to health, it is imperative that the concerns of youth with disabilities are mainstreamed into government health and population policies.
5) Why are people with disabilities considered asexual?
Historically persons with disabilities have been subject to sexual segregation, sexual confinement, marital prohibition and legally sanctioned sterilisation under the guise of patient protection from pregnancy and sexual abuse. There are many misconceptions and fallacies surrounding the sexuality of persons with disabilities. They may be regarded as asexual, i.e. they do not/should not have sexual needs and feelings. Hyper-sexuality (particularly used to describe sexual behaviour of men with disabilities) or an excess of sexual desire is the other extreme of this negative attitude. Underlying the myths and misconceptions about sexuality of persons with disabilities is the eugenics argument i.e. that the progeny of disabled persons will also be disabled and hence the need to prevent them from reproducing. This is again not true because only a small number of disabilities are known to be genetic.
6) What is sexuality and sexuality education all about for persons with disabilities?
Sexuality is an area of distress, exclusion and self-doubt for persons with disabilities. At core sexuality is essentially about acceptance of self and acceptance by others. It is an integral part of human life and not a matter of shame and guilt. Given the oppression suffered by persons with disabilities, there is every reason to believe it is a matter of utmost importance in the movement for total inclusion of persons with disabilities in the social mainstream. Sexuality education is not just about body parts and reproductive education. It is equally about self-awareness, self-esteem, self-protection and relationships.
7) What, according to your research, are the stumbling blocks, for people with disabilities, in experiencing sexuality?
People with disabilities are normally perceived as sexually undesirable or less desirable than non-disabled people. One of the reasons for this negative attitude towards sexuality of persons with disabilities is the idea that they are considered physically unappealing and hence not in a position to attract a sexual partner. Such ideas lead to the person’s perception of him/herself as ugly and sexually incompetent. The absence of positive role models of persons with disabilities creates further confusion in the minds of young persons with disabilities giving the negative message about the possibility of sexual fulfilment. Acceptance of the disability, learning to view oneself as a sexual being and as a person worth relating to, do not come easily to persons with disabilities. Practical impediments also limit options of persons with disabilities in the pursuit of fulfilling sexual and romantic relationships. They have limited contact due to a number of reasons: architectural barriers and transportation difficulties, limited opportunities for meeting people and learning to socialise. Barriers are not just attitudinal in finding partners but also physical in accessing places where opportunities for heterosexual interaction / association are available, and then reaching these venues. All these factors may prevent persons with disabilities from learning how to manage sexual urges and associated emotions.
8) What is the human rights perspective vis-à-vis reproductive health of women with disabilities?
The human rights perspective proclaims that the reproductive health of women with disabilities is valuable, child bearing and rearing are voluntary and personal choices, and their opportunities and experiences of sexual satisfaction are important. Women with disabilities have an equal right to sexuality and parenting as other people. There is no reason to suppose that women with disabilities do not require sexual and reproductive health services, since they are unlikely to marry and have children. The perspective is also propagated by the health system, since the special reproductive health needs of women with disabilities are no factored into diagnosis and treatment at health facilities. Staffs are not trained; infrastructure like wide corridors for wheelchairs and high examination tables are not available and no separate records kept of patients with disabilities.
9) What are the barriers faced by persons with disabilities in their pursuit of marriage and parenthood?
There are many barriers which persons with disabilities face in their pursuit of marriage and parenthood. Most persons with disabilities lack the skills and training to becoming financially self-sufficient. But even if that is achieved, they still have to confront the multiple negative perceptions of non-disabled persons with regard to physical attractiveness, sexual desire and competence and parenting ability. They have to overcome social stereotypes of being regarded as child-like, vulnerable and in need of perpetual care themselves. Being recognized as responsible adults is an uphill task for persons with disabilities. Due to lower status in society by virtue of being women, the obstacles to marriage and motherhood are even more daunting for women with disabilities than men with disabilities.