key: cord-0725295-5gz6wdpb authors: Emmanuel, Sarala; Saroor, Shreen title: Experiences of Gendered Norms and Mobilizing for Rights of Women Living With Disabilities in the Post-war Context in Sri Lanka date: 2022-04-19 journal: Front Sociol DOI: 10.3389/fsoc.2022.715240 sha: 0722dfaa7fab73619b594641ee3e1353cdbee703 doc_id: 725295 cord_uid: 5gz6wdpb This paper juxtaposes existing legal/policy frameworks, national and international, with narratives of women living with disabilities in the post-war context in Eastern Sri Lanka. These narratives highlight their lived experience and needs. The paper draws from a process of consultations among women living with disabilities and the authors, who are long standing allies of this struggle in their capacity as activists and researchers. It focuses on key aspects of myriad gendered norms that were articulated during the consultations and describes the structural discrimination that emerges from such norms, as experienced by women living with disabilities. The paper ends with some thoughts and key proposals of women living with disabilities for the future of this struggle for justice. Vijaya was injured during the war and her leg was amputated. She has many health complications. Every year during the rainy season her home floods resulting in more than one foot of water inside the house, and she has to manage her household work with a prosthetic leg. Her prosthetic leg needs to be repaired. Vijaya also has to go to at least three different clinics for her chronic health issues. However, she does not have the money to travel the 1 h distance by bus, from her village to the Batticaloa hospital to meet her medical needs. Vijaya was only recently included in the disability allowance scheme, even though she has been living with her injuries for more than a decade. The reasons for this delay are unknown to her despite her repeated efforts of enquiring from local government officials over the years. As the COVID 19 pandemic spread across the country, Vijaya found it harder and harder to access any assistance. It was through calls to another woman living with disabilities in her village, who could still get around relatively more easily, that she managed to access some relief assistance. Saraswati, is a woman living with physical disabilities due to war related injuries. During the COVID-19 pandemic things became harder for her. She was in a long term, violent and abusive relationship; but when she started getting the government COVID-19 relief money of Rs. 5,000/-and also some relief goods from women's organizations, her husband became more abusive demanding the relief money and the relief items. When she refused to give him the money, he had assaulted her and forced her out of the house with the children, and they spent the night in the neighboring shrub jungle. That night, her phone battery had died she was unable to call anyone for help. The next day, she had managed to recharge her phone from one of the neighbor's homes and called the police emergency hotline. However, they refused to come immediately because of the curfew. The police only arrived the next day in the evening, and she was taken to the hospital immediately. After she was treated for her injuries, the hospital authorities refused to allow her children to remain with her in the hospital due to COVID-19 regulations. A local women's organization made efforts to take her to a women's shelter. However, the ambulance had restrictions on where it could go as per COVID-19 regulations. She was then compelled to return to her abusive home with her children. Vijaya's everyday struggles due to poverty, and annual monsoonal flooding, did not make her a visible priority for state assistance. Her gendered work responsibilities in the household and lack of income, meant that she was disconnected from essential health care support. Apart from the cost of the bus fare which she couldn't afford, public transport was not conducive to the needs of those living with disabilities. This further inhibited her access to the hospital. Even after approaching local state officials for assistance, during the COVID-19 context, nothing reached her. Saraswati's experience highlights how essential services does not cover support for domestic violence during the COVID-19 pandemic. Health regulations, which are gender blind, meant that Saraswati had no choice but to go back home, as she had no place to keep her children. She had no transport services to access the women's shelter. Drawing from the experiences of women such as Vijaya, Saraswati and many others, this paper focuses on gendered norms and structural gender discrimination experienced by women living with disabilities in the Eastern Province, Sri Lanka. It highlights the unique experiences of women living with disabilities who are at the interstices of different marginalities including, but not limited to, ethnic identity and socio-economic status. These realities exist alongside the everyday challenges to the fulfillment of their fundamental needs by virtue of systemic policies and practices that are blind to the lived realities of women living with disabilities. This paper lays bare the gendered hierarchies in the systems of assessment of disabilities and how they impact access to social welfare benefits and other basic services. Most importantly, this paper documents women's persistent efforts at collective mobilization and action as part of the struggle for their fundamental rights, to challenge gender norms and to care for one another. This paper draws from a process of consultations with women living with disabilities in the Eastern Province of Sri Lanka, facilitated by the Eastern Social Development Foundation (ESDF) in Batticaloa, and led by the authors of this paper. ESDF has been mobilizing women living with disabilities in the Eastern Province for a few years and has been supporting such women with livelihood assistance and in assisting their access to state services. Through collective discussions with the leaders of the different groups of women from the three districts, the need to have a policy document with recommendations from their experiences was identified. The more the women came together and shared their experiences, the more it became clear that there was a wide gender gap in policies and services for persons living with disabilities. It was also starkly apparent that the extent of the war related impact on communities was largely hidden, including the particular experiences of women disabled by the war. This led to a process of the authors working together with women leaders to collectively document their experiences and articulate practical recommendations that emerged from this process. These recommendations were focused on creating gender sensitive state structures that are able to meet the needs of women living with disabilities in post-war Sri Lanka. 2 Through several focus group discussions during the months of March to July 2020, 3 in Ampara, Batticaloa and Trincomaleethe gender norms and the discrimination thereof that mediated access to information and services were documented. Consent from members of the group for using their narratives and thoughts, anonymously in this paper was acquired at this time. The consultations also led to policy recommendations from 75 women and 11 men living with disabilities to review access to services and ensure the rights of persons living with disabilities in the post war context in Sri Lanka. These vibrant collective processes included educating each other on UN language on disability rights; discussing language and possible translations of concepts in our own languages that gave dignity and challenged stigma; about identifying and replacing degrading terminologies in local languages; along with essential discussions on what was practical and imperative in terms of rights and services. There were two rounds of feedback integrated into the final report. One was those which were articulated in a meeting with the women leaders and another where women leaders, national level stakeholders in policy making, other disability rights organizations as well as selected state service providers were present. The original report was finalized in Sinhala, Tamil and English languages. The recommendations that came out of the consultations process was 2 The full extensive report Ensuring Our Rights from the Home to the Parliament: Position Paper on Gender Sensitive Service Provision and Victim-Centric Reparations for Women living with Disabilities Eastern Province (October 2020), was prepared by Emmanuel and Saroor (2020) in consultation with women leaders living with disabilities, facilitated by Eastern Social Development Foundation, Batticaloa. It was compiled in English, Sinhala and Tamil and published by Eastern Social Development Foundation, Batticaloa. The recommendations put forward by the women leaders were extensive and covered all aspects of their lives including, health, education, employment, transport, recreation, sports, identity, dignity, structural changes, budget allocations, support for care work, leadership and responding to violence and sexual harassment. This paper highlights a selected number of those recommendations. 3 Due to the context of COVID-19, all FGDs and meetings carefully followed government regulations and restrictions on meetings to ensure the full safety of all those who participated in this process. submitted to the Experts' Committee that was drafting a new constitution, under the Ministry of Justice in December 2020. Apart from discussing gender sensitive recommendations based on the experiences of the women leaders, through the consultations. We took the time to discuss the gendered frameworks which were being put forward at the international level. The discussions were full of energy and the recommendations were clear and strong. Later, the women leaders met with the officials at the Human Rights Commission in Sri Lanka and further strengthened their recommendations. There were also many interactions and sharing of strategies with other women's groups in the North of Sri Lanka. The final submission to the constitutional committee was put together by a feminist lawyer based on these discussions. This submission was made in collaboration with three different networks-Forum of Women with Disabilities, Eastern Province; Women Organization Working on Disability, Mannar, Northern Province; and We Can-Creative Jobs for Differently Abled, Thirukketheecharam, Mannar District, Northern Province. This paper, presented here as research findings, is one part of an already existing and continuing process of discussion and organizing of women living with disabilities along with their feminist allies who are part of the movement for the rights of women living with disabilities. It is hoped that it is one of many ways to contribute to the struggle for Justice. This paper is set in the context of post-war Sri Lanka, especially in the North and East of the island that was directly affected by the war. The war was fought primarily between the Liberation Tigers of Tamil Eelam (LTTE) whose political aim was for an independent state, and the Sri Lankan military. 4 The war lasted for more than three decades with numerous attempts for peace negotiations, that failed. Finally, the Sri Lankan military with the support of many international actors, militarily defeated the LTTE in May 2009. During the decades of war many women had also joined the LTTE as fighters and other administrative officers. 5 The war left deep ruptures in Sri Lankan society as a whole, also leaving a trail of destruction in the geographical regions where the fighting took place. While the histories of the women in this paper are deeply connected to the war, it is difficult to tell their stories with a clear demarcation of "during" and "after" the war. They themselves do not speak of their journey with this differentiation. In order 4 The root causes for the conflict can be traced back to the emergence of the postcolonial independent Sri Lanka. During the decades of war there were numerous armed actors in the North and East, however, the LTTE was the primary militant group that became powerful. For more information also see Hoole (2016) ; Hoole (1990) ; Devotta (2005) ; Hoole, Rajan, UTHR(J), Sri Lanka's Colonization Experience: Development or Disaster https://uthr.org/Rajan/colonaisation. htm; http://archive.pov.org/nomoretears/timeline/; https://minorityrights.org/ minorities/tamils/; https://en.wikipedia.org/wiki/Origins_of_the_Sri_Lankan_ civil_war; https://www.himalmag.com/a-tale-of-two-languages/; https://www. bbc.com/news/world-south-asia-12004081 to remain true to their stories, they are best told when placed within a continuum that spans across this time. Similarly, the community groups of women living with disabilities, include women who were injured during the war, women who were living with disabilities from birth or other causes, and women who were carers of family members who were living with disabilities. The consultations therefore captured a broad range of gendered experiences. Thus, in the paper that follows differentiations in terms of gendered experiences of war-related disabilities and other disabilities are not made unless it was specifically narrated by the women we spoke with. Globally, there has been a shift in how disabilities have been understood and defined. Disability is no longer seen through the perspective provided by the medical model alone. People are seen as being disabled by their social contexts rather than solely by their bodies. There are two important paradigm shifts that highlight; disability as a human rights issue and disability as having a bidirectional link to poverty (Peiris-John et al., 2014; UN, 2018; UNESCAP, 2019) . The World Health Organization World Report on Disability (2011) states that "disability is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in bodily function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual's involvement in life situations." The United Nations Convention on the Rights of the Persons with Disabilities (UNCRPD), was ratified by Sri Lanka in 2016. Articles 6, 16, and 28 in particular address the rights of women with disabilities and notes that State Parties are accountable "to recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms and to take all appropriate measures to ensure the full development, advancement and empowerment of women, for the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention." In ratifying the CRPD, Sri Lanka under international law, has an obligation to meet the requirements of this treaty. 6 This is the global context in terms of policy from which we need to understand the domestic policy and experiences of such policies for women living with disabilities in post-war Sri Lanka (Protection of the Rights of Persons with Disabilities Act No.28, 1996) . According to Samararatne and Soldatic (2015) the existing law, The Protection of the Rights of Persons with Disabilities Act No. 28 of 1996, is not based on a rights framework and only broadly sates a "person with disability" means "any person who, as a result of any deficiency in his physical or mental capabilities, whether congenital or not, is unable by himself to ensure for himself, wholly or partly, the necessities of life". The Ministry of Health has noted that by 2040 the percentage of persons living with disabilities will rise to 24.4%. 7 The reasons for this were identified as the increasing numbers of elderly and road accidents. According to a study on disability conducted by the Sri Lanka Department of Census and Statistics (2012), 8 1,617,924 persons live with disabilities in Sri Lanka, or 87 persons per every 1,000 persons. Among this group, 43% were male and 57% were female. It is not clear if this data even includes the war affected North and East. This data was collected in the aftermath of the war when such a process of data collection would have been difficult and any results thereof declared by the government would not be reliable. One of the few studies conducted in the Northern Province that look into the extent of persons living with disabilities was carried out by the Ministry of Health Indigenous Medicine Probation Child Care Services Northern Province (2016). 9 This study states that there has been a historical dearth of data on the health status of the Northern and Eastern Provinces as they were not covered by the Demographic Health Surveys. Consequently, there was little information on the prevalence of disability, despite all circumstantial evidence indicated a dramatic rise of persons living with disability due to injuries in a post-war context. According to the data collected in this report for the Killinochchi District, for example, out of 120,298 household members 13,131 persons were recorded as having a disability. This is 10.9% of those included in the study and means that one in 10 persons in Killinochchi was living with a disability. According to a World Bank Report (2018) 10 on the socioeconomic challenges in the aftermath of the conflict, one of the groups identified as most vulnerable were ex-combatants. The report noted that around 11,000 ex-combatants had returned home. It stated that they continued to face severe challenges in finding employment along with the social stigma. The report further noted that female ex-combatants who already faced gender discrimination and profound social stigma were made further vulnerable due to them being women living with disabilities. According to the data provided by the district offices, there were 17,487 persons registered as living with disabilities in the Eastern Province, out of which 9,461 are men and 8,026 are women. In 2019, the government of Sri Lanka increased the monthly disability allowance from Rs. 3,000/-to Rs. 5,000/-11 More importantly the number of beneficiaries was increased from 32,000 to 72,000 12 . This decision came about by consistent lobbying by women living with disabilities in the North of Sri Lanka with the then Minister of Finance. This show of political will by the government made a huge difference to many women as they were included in the disability allowance scheme after being on waiting lists, sometime for decades. According to 2019 data available at the District Office 7,240 persons are registered as living with a disability in the Batticaloa District, one of the three districts in the Eastern Province 13 . However, it was not possible to get sex disaggregated data. Out of this number, 1,034 persons are receiving the disability benefit, and in 2020 this was increased to 3,442. Since then, another 2,000 forms from Batticaloa have been submitted to the Ministry of Social Services and Social Welfare, many of whom are yet to be added to the list. Gender norms and patriarchal structures exert influence on all structures in Sri Lanka, be it political structures, education, economy and socio-cultural spaces. Some key indicators for this include the dismal participation of women in politics with representation of women in Parliament being at 5.3% 14 and the low participation of women in the labor force which is at 36.6%. 15 According to a World Bank study which analyzed data from the Household Income and Expenditure Survey (2006/7), 16 more than 70% of women who had children were not in the labor force as they had to bear the burden of household care work. 17 Women who step into the public realm are constantly policed by sociocultural norms of respectability and the fear of sexual harassment. Sexual harassment is widespread in Sri Lanka with 90% of women stating that they have experienced sexual harassment in public transport. 18 Even intimate partner violence against women is common. According to a Women's Well being Survey conducted by the Department of Census Statistics (2019) women's access to property and equal rights in the institution of marriage. Jayawardena (2017) has shown that myths of female inferiority is used as the rationale for maintaining traditional social roles which are reinforced by the media as well as school textbooks. These range from reinforcing images and discourses that state that women are physically and mentally weaker; that women are irrational and emotional; that they are incapable of certain types of work; and the reinforcement that women's primary role is as wife and mother; that housework is women's work. 20 These gender norms strongly influence experiences of women living with disabilities as well. These experiences deeply intersect with their experiences of ethnic identity and economic vulnerabilities in the post war context. Manjula * had four children, and even though her oldest son lived with a physical impairment, and needed to be taken to a physiotherapist every month, she couldn't take him, as she didn't have support to leave her other three young children at home. Hatheesumma * had one hand amputated due a workplace injury. She broke stones for a living using one hand. Her two daughters were married and she had given them her land as dowry and now has no home to live. Her Samurdhi 21 (social security) allowance was reduced as her daughters were married and were now considered as separate household units. She couldn't afford her medicines. She had applied for the disability benefit, but since her husband did not live with a disability her application was rejected. It was assumed she was his dependent and that he would provide for her as the head of household. Similar to the experiences of Vijaya, Saraswati, Manjula and Hatheesumma, of the 75 women we spoke with, 36% were from women-headed households and are living in poverty. Almost half of the women we spoke to, 48%, were disabled due to the war. Of those interviewed, only 50% were receiving the disability benefit, 46% were receiving other state support, while 4% were not receiving any state support at all. All the respondents stated that their monthly income was Rs. 15,000/-or below, indicating that they were living well below the poverty line. The Poverty Head Count Index in the North and East continues to be far below the national average. According to 2016 Central Bank data, while the average Poverty Head Count Index for Sri Lanka is 4.1%, it is 11.3% for Batticaloa. Overall, it is apparent that women living with disabilities are living under extremely vulnerable conditions. These realities, unsurprisingly, conform to global thinking that there is a bi-directional link between disability and poverty. 20 Jayawardena (2017). 21 Samurdhi is the Social Security Benefit Scheme given to those assessed as living below the poverty line. Gender Norms-The Household as Unit of Analysis and the Assumption of the Male Person as the Head of Household and "Provider" One of the key manifestations of the systemic discrimination against women living with disabilities is also the very first step they must take to access state support-the disability assessment form. The Assessment Form that needs to be completed in order to qualify for the disability benefit is issued by the National Secretariat for Persons with Disabilities, which comes under the Ministry of Social Services and Social Welfare. The form and the assessment has, as its basis, the household as the unit of assessment-not the individual. A higher scoring (25) is given if the person with disability is the head of household. If it's a child or other dependent its 15 points. This means that by default, a woman living with disability who is married to a man who is not, will automatically score less even if she is the primary earner and caretaker of the family. There is no option to declare, even with proof, that she is the "head of the household." Furthermore, a woman with disability married to a man who is not, is seen by default, to be a "dependent." A lesser score would then mean a more arduous struggle to access the disability benefit. This makes for a reality where women and children's access to the monthly allowance is much more challenging compared with men living with disabilities. The notion of men being the head of the household and provider of the family has a huge influence on how government officials decide who should be prioritized to get the allowance. There were experiences shared with us where disabled women and children had been asked to wait for over 4-5 years to register for their eligibility for monthly allowance. Often women's applications were rejected because of the gendered norms and assumptions that their male family members will provide for basic needs. The discriminatory nature of this assumption notwithstanding, more often than not, the male members did not provide for the rest of the family either, leaving all of them destitute. In homes where the man and the woman both have disabilities, only the man is included in the assistance scheme. One woman shared that because her husband was disabled, she was not considered eligible for the disability assistance even though she had severe disabilities. The assumption here is that the "bread winner" of the household would automatically care and look after her. Thus, by extension she is assumed to not be the head of household when in many cases, as mentioned earlier, women in general, in this area, often are the sole earning members. This is due to a myriad of reasons which are outside the scope of this paper. These women are the sole bread winners whether they have a husband or not, irrespective of whether they are living with a disability or not. Within the state's patriarchal system, single women living with their parents or alone are not considered deserving of state assistance. As one woman living with disabilities explained, she was told that she was not eligible for housing assistance as she was living with her parents, and she needs to marry as that is a prerequisite for her to be considered for housing assistance. Another woman shared that even the relief packs that came during the COVID-19 curfew months were not given to her by the local Grama Niladhari (village level government administrative officer) as they were sharing the home space with her parents. In some instances, the relief packs were reduced in amount if there were less than three persons in the household even though people living with disabilities were much more vulnerable in terms of accessing support or being able to earn an income during the COVID 19 crisis time. There was no acknowledgment that persons living with disabilities are part of the high-risk category, who are more vulnerable to illnesses and infections. Gendered Norms-Regulation of Women's Mobility, Presence in Public Space and Access to Information and Support A commonly observed phenomenon in the region is the challenge faced by many women of the Islamic faith in obtaining medical records and care, as social norms necessitate the presence of a male family member to travel to the hospital with them or other districts for medical examinations. When they are unable to convince a male family member to accompany them, women often miss their clinic dates and experience delays in submitting forms for state assistance. Very similar to this, the social stigma and shame for women to be visibly disabled in public spaces, inhibit many women from accessing medical equipment and assistive devices. This further restricts their movement as such devices would have eased their mobility to some extent. If women were to make the difficult decision to eke their livelihood through a small business, for instant, their access to loans and any other form of livelihood support is also marred by discriminatory thought and practice. Especially women living with disabilities who are head of households are assumed to be inadequate and thus a risky option in terms of providing loans. Thus, this group of women have to struggle for financial assistance in a context where they HAVE to provide not just for themselves but for the entire family. While this challenge may be chalked up to private entities who are less accountable in general in terms of their practices from the perspective of discrimination, state services; on the other hand, do not present a much better picture. In mixed Focus Group Discussions (FGDs) with both men and women living with disabilities, it was revealed clearly that men were more aware and well informed of government assistance, programs (amendments or changes) and had details of whom to approach for this assistance. Women on the other hand did not have the information and did not know of any way to even begin to access such assistance. This is in addition to the above mentioned challenges that occurs when the woman knows how to approach any entity in the public sphere for any assistance. Abitha * is the head of her household of six members. Her husband had left her with four children many years back. She makes string hoppers for a living and earns Rs. 1,500 on a good day. She realized her youngest child had a speech impairment when he was 3 years old. She had a lot of expenses trying to make him well over the years as she began to notice that he had several developmental challenges. She took him to the government hospital, to the Mosque and also to the Samanthurai Kannakiamman Kovil (a temple of a female goddess believed to have powerful curative powers) and placed a neththi kadan (a vow) to make him well. She has now stopped the schooling of her oldest daughter so she could look after her brother. She does not get any social security benefits from the state. The women we spoke with strongly expressed the burden of care that is upon them to care for family members with disabilities. Children living with disabilities children are not eligible to receive the disability allowance when they are born, as the system assumes that the parents will look after them. This in turn places a double burden on the mother or grandmother who is often the primary caregiver. Apart from ensuring that the child's fundamental needs are met, they must also seek additional support for schooling, medical treatment and other resources for care from ad hoc sources. As noted earlier, 36% of the women we spoke with are heads of their households but are not recognized as such. Women who were caring for children with disabilities alone, mentioned that, often, they did not receive childcare support from the father of the child. Sometimes the father of their children had married other women and left the full burden of care on the mother. One Muslim woman caring for her child, said that she had been going to the Qazi court (the religio-judicial space which women of the Muslim community approach for family law matters as per the Muslim personal law) asking for maintenance, for over 2 years but to no avail. The recommendations put forth by women living with disabilities, some of whom are also caring for children living with disabilities speaks volumes of the essential needs that remain unfulfilled. They asked for day-care centers for children and drop-in centers where persons with disabilities (particularly the elderly) could go and access recreational and learning facilities coupled with good quality care. They articulated that community-based support for persons living with disabilities should be designed to counter the over reliance on the family / household, as the burden of such over reliance is borne by women. A shared public space, where, even for a few hours, the care of persons with disabilities can be organized, would allow them to work, study, be involved in public life and also to have some rest from care-work. Such a provision even if only for a few hours was articulated as one of great relief, which stands testament to the burden they bear and the pressure they are under in their daily life. Saroja * was a young girl in 2009 when the war ended. She suffered from head injuries due to the aerial shelling and lost family members. She lives with shell pieces in her head and suffers intense headaches on a daily basis. She is unable to function through the day without the assistance of pain killers. Through conversations with women living with disabilities, it became apparent that there were hierarchies within assessment of different forms of disabilities. The Assessment Form that needs to be completed in order to qualify for the disability benefit, as mentioned earlier, is issued by the National Secretariat for Persons with Disabilities, which comes under the Ministry of Social Services and Social Welfare. The form consists of six parts. Section D of the form requires a recommendation by a medical officer. In terms of the scoring criteria to qualify for the disability benefit, it is a prerequisite that the monthly income is