By Niluka Gunawardena 

Standpoint

My personal experience of navigating the ‘marriage market’ is a good starting point to explore the lived sexual and reproductive realities of disabled women in Sri Lanka. Upon reaching a marriageable age, my parents sought to find me a suitable husband through established avenues like matrimonial columns, match making sites and personal networks. My two non-disabled sisters have also been subjected to the same process with varying reactions. I have been fascinated by how I am advertised and marketed. My “product description” mentions that that I have a defect, which is largely compensated by education, decent looks, wealth, family status and inheritance. Some Sri Lankan matrimonial sites now even have a ‘defect’ option to click on when creating a profile. These sites are like dating sites, except that they are aimed at community-approved marriages. Profiles are often set up, viewed and vetted by family members. I discovered this by chance when I stumbled upon my marriage profile on a browser that was left open on the home computer! It was set up by my mother and included a defect clause. I have strongly protested against being advertised as a defective commodity or any commodity for that fact. My mother and uncle have tried to convince me that such a transparent product description is necessary so as not to mislead potential suitors and their families. Some extended family members have alluded to the fact that willing suitors could be ‘compensated’ for my ‘minor defect’ through a suitable dowry. Others have expressed that I should marry a man with a defect so that he may not resent me in the future. This implies that an ablebodied spouse will invariably resent me for my ‘defect’.

Working with disabled women in Sri Lanka, I have come across the view that ablebodied men who marry disabled women are self-sacrificing, magnanimous, compromising individuals. They are at times even compared to Bodhisatvas – selfless beings who endure hardships like marrying disabled women with the view of attaining Buddhahood in the future! This is partially due to the false assumption that non disabled men who marry disabled women willingly undergo a reversal of traditional gendered care roles associated with South Asian marriages. It is also due to the associative stigma that such men may experience. Disabled women are expected to be eternally grateful and indebted to their virtuous husbands. This places them in a highly precarious state of asymmetrical power relations. They are bound to endure whatever form of relationship dynamic including abuse and violence on the basis of indebtedness.  For disabled men, marrying ablebodied women is a means of gaining social esteem and demonstrating one’s manliness as it plays into existing cultural roles of sexuality, duty and care. Women face a different reality, as disability is deemed incompatible with their matrimonial gendered roles and expectations. Marriage between two disabled people maybe considered more acceptable. However, that too maybe rejected due to stigma and reproductive fears of propagating disability through procreation.

The stringent criteria for filtering potential husbands is often relaxed when it comes to disabled women. Looking at my marriage profile, I have noticed that a wider spectrum of men are under consideration than for my sisters including “socially devalued men” like divorcees, older men, disabled men and men who are generally incompatible.  This compensatory, transactional approach to marriage is tied to class, privilege, affluence and influence. It is not a viable option for most disabled women. Even as an available option, it is highly undesirable given its underlying assumptions and the power asymmetries that it engenders.

Stigma and Shame

The pseudo-Buddhistic notions of hiri- othap or lajja-baya (shame and fear) discursively regulate the fulfillment of duties and moral conduct, especially in relation to bodily action and expression in Sri Lanka. Hence social status and approval become of paramount importance.  Disability is seen as a factor that leads to diminished status and social disapproval. This often leads to the stigmatization and marginalization of married women who acquire impairments by their families and in-laws. Soma*, a married woman who acquired a spinal cord injury said that her in-laws and doctors were pressurizing her to get a divorce as she was now a burden to her husband and could no longer meet his sexual needs. There was a perceived inability to fulfill her ‘wifely duties’ which is important in a heavily duty driven society. She had become a source of shame to her family. Shame can also be linked to karmic understanding of disability, were impairment is an embodied signifier of past life immorality. Hence families are karmically stigmatized and devalued by association. Soma’s exclusion by her family also reflects a highly limited understanding of sex and sexuality. It supports the view that sex which is not penetrative, marital, reproductive and heterosexual is not sex at all! Furthermore, it denies the expression of sexuality, intimacy and desire beyond the physical act of sex. Many individuals with mobility impairments and spinal cord injuries are deemed incapable of sexual gratification on this basis. Women like Soma are desexualized, stigmatised and degendered through such beliefs and practices. In the case of psychosocial disabilities, there are accounts of women who have been viewed as hypersexual or unfit to perform their marital duties and forcibly incarcerated by families and in-laws. It is an extreme form of intersectional violence and exclusion.

Unmarriageable

It is important to note that the diminished marriageability of disabled women in South Asia is a manifestation of systemic oppression brought about mainly due to the exclusionary institutional practices of marriage as opposed to any inherent undesirability or unlovability. Disabled women may have relationships and enter sexual relations but are often precluded from marriage, which is the primary avenue for sexual validation and the sanctum of reproduction. Ravini*, a feisty disabled women who worked in the advocacy sector once told me that “a woman can never be disabled and a disabled person can never be a woman”. She had a relationship with a man who said that he was in an unhappy marriage and would soon leave his wife to be with her. She eventually became pregnant, whereupon he paid her to get an abortion and left her. He claimed that although he loved her, he could not ‘officially’ be with her as it would be unacceptable to his family. Hence he could not have a child with her. She would always be a socially unacknowledged secret.

Disability is stereotypically associated with asexuality and innocence. Additionally, disabled women are portrayed as vulnerable and fragile. Ravini’s heartbreaking experience and the views expressed by a member of a DPO (Disabled People’s Organisation) in relation to this article indicate that many disabled women do have informal and casual relationships. They are however often excluded from marital motherhood and other forms of reproductive endorsement. This has a significant impact on their experienced and perceived worthiness and social standing.

Access Denied

Marriage is the primary gateway for access to mainstream sexual and reproductive health services for most women in Sri Lanka. When you walk into a doctor’s office for matters regarding reproductive health including STI screenings, pap smears and IUD implants, the first thing that you are asked is “are you married?”, not whether you have engaged in sexual relations. I have sat with a friend at a medical consultation where the doctor immediately concluded that she did not need to take a STI test as she was unmarried. Similarly, a doctor refused to do a pap smear for another friend as she was unmarried.  Many unmarried women who are sexually active have to falsely claim that they are married in order to access sexual and reproductive services. This false cultural relegation of sex and sexuality to the confines of marriage is closely tied to the stigmatization and vilification of women who engage in non-marital sex.  Many unmarried women are reluctant to access sexual and reproductive services due to ascribed shame and internalized stigma. Disabled women are deemed not only asexual but also unmarriageable. Hence the access question of “are you married?” often becomes irrelevant in the eyes of healthcare providers. This is one of the key reasons why disabled women are automatically omitted and erased from mainstream dialogues surrounding reproductive health. It is linked to the fact that both disability and reproductive health are still primarily viewed through a culturally informed medicalised lens as opposed to a rights based framework. Access is determined on the basis of pathology, medical authority and cultural filters as opposed to universal access. A few independent organizations like the Family Planning Association (FPA) do adopt a rights based approach to SRH and provide services on that basis. However, disability is engaged with at a very limited level. The FPA has demonstrated a willingness to work through the IPPF framework to increase its engagement with disabled people.  This is an avenue that needs to be actively pursued in the future.

Sexual Underbelly

A male representative of a DPO interviewed for this article felt that many disabled women in his area were duped by men for sex. The validity of this sentiment needs to be tested in conversation with such women. The landscape that emerges is not one where disabled women are completely desexualized, but one where their sexuality is driven underground as something to be hidden, denied and invalidated. It is a product of the larger dynamics of shame and stigma that govern social relations both in relation to sexuality and disability. The relegation of disabled women’s sexuality to the shadows makes them vulnerable to abuse and exploitation. In 2007, I met a mother of a legally blind woman who was desperately seeking assistance. A known man had repeatedly raped the daughter while the mother was away at work. When the mother and daughter sought police assistance, they were ridiculed and dismissed by the officers. The daughter was told that she should not complain as at least she “got some action” despite being blind. She also faced barriers to justice due to ableist, restrictive rules of evidence. This is a complex case that has haunted me throughout the years. The confines of this article do not allow for an elaborate discussion but it demonstrates how the relegation of disabled women’s sexuality to murky peripheries devoid of consent, trust, visibility and validation leads to heightened vulnerability. They are not subjected to the same normative standards of respectability in a society where women’s sexual honor and virtue are accorded significant importance. This can be a blessing in terms of circumventing gendered expectations and a curse in terms of diminished access to services. Disabled women’s underground sexuality is intermeshed with power dynamics of abuse and exploitation. It leads to multiple stigma associated with intersectional experience like disabled woman, disabled woman in a non-marital relationship, disabled woman seeking an abortion or disabled woman who has been raped. Such identities and experiences cannot even be articulated using existing mainstream socio-cultural and juridical frameworks and languages.

It is only recently that the disability movement in Sri Lanka has started looking at the issue of sexual violence. While this is a highly encouraging, the framing of sexuality in terms of vulnerability may detract from a conceptualization of sexuality and reproduction as universal rights.  What is required is a balance between addressing vulnerability and developing sex positive rights frameworks. This would require building alliances with the broader sexuality and reproductive health sector which is slowly moving towards a rights based model.

Institutional Guardianship

The current modus operandi in relation to disability in Sri Lanka is one of social welfare and charity. Many disabled people are institutionalized in care homes that are charitable entities. The rights of women who spend their lives in such institutions are severely restricted and their autonomy and agency are often subsumed by institutional guardianship and wardship. Most disabled girls and women are ‘admitted’ to such homes by their families. The onus of care for those with severe impairments often falls on ablebodied female family members. In the absence of formal services, community based care, awareness and financial means, and in the face of societal stigma, many low-income families opt to institutionalize their daughters. These homes are funded and perpetuated by Sri Lanka’s merit economy. Women in such homes are automatically excluded from the marriage market altogether. Decisions regarding their reproductive health are made at an institutional level. Disabled women, especially those with intellectual disabilities are often subjected to involuntary sterilization. A 2000 entry in the Disability Organisations Joint Front (DOJF) media archive revealed how girls with intellectual disabilities in a home for “special children” were sterilized without consent. This was due to the inconvenience caused to staff when assisting them during menstruation and fears that they would produce “unwanted babies” through “undesirable activities”.  The girls were not consulted regarding this matter as they were deemed lacking legal capacity and rationality. They were under the guardianship of the care home.

Reproduction is deemed irrelevant for disabled women and as such not much thought is given to stripping their bodies of reproductive capacity and agency. If viewed in terms of vulnerability, the disabled woman’s body is seen as a liability where rape and sexual assault may lead to unwanted pregnancies. In a society where women who experience rape and disabled women who reproduce are heavily stigmatised, sterilization and forced abortion are seen as a convenient means of brushing both under the carpet.  The pregnant body of the disabled woman is shameful and dangerous. In no way does this approach of “destroying the evidence” address underlying issues of vulnerability, ableism and violence. Furthermore, it can become a shroud behind which institutional abuse and exploitation can flourish. There is no system of accountability and no specific legal framework for the protection of those under the guardianship of charity homes.  This renders disabled women in such homes especially vulnerable.

Care Economy

The elimination of the reproductive potential of disabled women by way of limiting sexual agency, involuntary sterilization or forced abortion is partially a result of the care economy in Sri Lanka. Given the assumed unmarriageability of disabled women, many would become pregnant outside wedlock under a range of circumstances. If not institutionalized, disabled women would live as wards of their families. This is partially due to the lack of state services and opportunities for independent living. It is also an outcome of a culture that heavily relies of family based care. Hence the pregnancy of disabled women compounds the associative stigma experienced by families. Children born under such circumstance add to the burden of care. At the institutional level, the disabled pregnant woman is an inconvenience.  Her agency is lost within these frameworks of structural dependence and care.

Even disabled women who become pregnant within wedlock are viewed with suspicion. There is a biomedical hysteria regarding the potential transmission of undesirable impairments through the reproductive bodies of disabled women. Furthermore, the genetic perpetuation of impairments in families compounds familial shame and stigma. There are concerns regarding disabled women’s fitness and capacity to become mothers and parent children. There is an automatic assumption that they will require special assistance or that they may neglect their children. Hence the pregnant disabled woman is viewed as adding to the care burden of the family.  Diminish maternal capacity may stem from the lack of reproductive information and services as well as an absence of specific maternal care for disabled women. Such systemic exclusion stems from assumed asexuality, exclusion from marriage and the devaluation and erasure of the reproductive potential and rights of disabled women.

Post-War Context

Sri Lanka underwent a protracted civil war from 1983 – 2009. This conflict led to a high incidence of impairment and inadvertently stratified disabled people in terms of civil-veteran status and gender.  State initiatives to meet the needs of veterans became a catalyst for disability policy reform and service provision. Limited initiatives in relation to the SRHR of disabled people can be traced back to efforts to meet the reproductive needs of veterans.  The LILI project set up by the FPA in 2009 addresses SRH needs of disabled veterans and their families. Some of the LILI camps and clinics are open to disabled civilians. By virtue of its constituency, the dominant dialogue on reproductive health tends to be male centric, functionalist and geared towards those with traumatic impairments like spinal cord injuries. Disabled civilian women in a post-war setting are largely excluded from this discourse. Many experience being abandoned by husbands or rejected by in-laws upon acquiring Impairments. Others have to navigate the intersectional stigma of being disabled war widows. Karmic narratives have often been used as a basis for the marginalization of women with acquired impairments in war-affected Theravada Buddhist countries like Sri Lanka and Cambodia. The socio-political landscape of post-war reconstruction has led to a hierarchisation of needs both in terms of nation building and the mapping of socio-legal priorities. AKASA is an organization that has done ground-breaking work with war affected disabled women in rural areas. Rehabilitation, access, vocational training, community mobilization and livelihood are priority areas for this organization. These priorities tend to reflect the mandates of other DPOs in the country.  Approaching disability rights in terms of needs hierarchies often leads to the exclusion of SRHR from transformative agendas. Aspects like physical access, employment and education are deemed urgent, basic rights whilst SRHR are seen as ‘elective rights’ or optional extras.  It is reflective of the general sexuality taboo that has led to resistance towards perceiving SRHR as human rights. This piecemeal approach to advocacy discounts the interconnected, holistic and universal nature of rights. As discussed earlier, economic independence and mobility are vital to the assertion of SRHR for disabled women whilst sexual autonomy is essential for their agency, mobility and civil society participation.  There is an urgent need for the prioritization of SRHR in the disability rights agenda in Sri Lanka.

Rights frameworks

The Sri Lankan government acceded to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in February 2016. This impels the state to shift from the current charity and welfare approach to a rights based approach to disability.  It is the culmination of a prolonged effort by disability rights activists to move disability beyond a model of morality, pity and medicalization to one of rights and agency.  A draft Disability Rights Act is currently under review. This Act aims to reflect the state’s obligations under the UNCRPD and explicitly addresses SRHR. Article 19, sub clause 3 states that all disabled people should have access to reproductive and family planning information and services to exercise their choices. The emphasis on the reproductive choices of disabled people, especially in a society where such choices have been restrained through guardianship and inaccessibility is noteworthy. The draft bill provides a foundation for the inclusion of SRHR in DPO agendas. It could also potentially provide a bridging point between the disability rights and SRHR movements. However, the efficacy of this provision will be diminished if wider systemic and institutional barriers such as the marriage imperative, presumptions of asexuality, ascription of devalued sexuality, burden of care, institutionalization and underlying discourses of shame and stigma are not dealt with in a meaningful manner.

Non-normative Sexualities

Returning to the issue of my marriage prospects, I must mention that I am a queer woman with absolutely no interest in gaining validation or acceptance through marriage. Regardless of my sexuality, I feel uneasy at the thought of entering a socially facilitated union that is contingent on the fulfillment of culturally mediated duties, gendered roles and expectations. This is not my understanding of marriage. However, living in a country that criminalizes, shuns and stigmatizes homosexuality, I have been able to use my diminished marriageability as a protective shield. I am able to be ‘deviant’ behind the veneer of presumed asexuality without normative pressures or suspicion. Homosexuality is already devalued and belongs to the shadows and its expression is not contingent upon marriage. I am subject to less ‘marriage pressure’ than able-bodied queer women as I have differential expectations. Access to queer spaces is mediated by class and privilege. As such most disabled queer women would lack access at multiple levels to express same-sex desire and form partnerships. At the crossroads of intersectionality, compounded stigma and multiple oppression, the disabled lesbian becomes invisible or non-existent in society.

Moving forward

In the absence of existing work and research on the SRHR of disabled women in Sri Lanka, I have attempted to cursorily map the terrain of some of the key issues in concern. The relegation of disabled women’s sexuality and reproduction to the periphery and the systemic exclusion from socially valued institutional hierarchies like marriage and motherhood results in their de-gendering and devaluation.  It also makes them vulnerable to violence and abuse. Presumptions of asexuality and the precondition of marriage for access often omits them from mainstream reproductive services and agendas. Institutionalized guardianship and the assumed burden of care often undermine their sexual and reproductive agency and bodily autonomy. Shame and intersectional stigma underpin systemic relations and practices of marginalization. Initiatives regarding disabled women’s SRHR need to effectively address these socio-cultural constraints and practices.

The draft Disability Rights Act provides an avenue to prioritize SRHR in DPO agendas and could be a bridging point to build alliances with the broader SRHR sector. It may also provide a basis to advocate for equal access to mainstream reproductive services. Macro reforms like the regulation of care homes and revisions to rules of evidence are necessary to mitigate the vulnerability of disabled women. A long term move towards independent living and rights may emancipate disabled women from complexities stemming from their dependency on the care economy. Alternatively, cultivating rights based models of community care and empowerment may enable them to exercise greater agency within existing socio-cultural frameworks. It is also important to provide platforms for disabled women to express their SRH experiences and concerns. As this initial survey indicates, their lived realities are far more complex than the stereotypes of asexuality and vulnerability.