“Freedom to go where I want”: improving access to sexual and reproductive health for women with disabilities in the Philippines

Abstract

Women with disabilities experience a range of violations of their sexual and reproductive rights. The Philippines ratified the United Nations Convention on the Rights of Persons with Disabilities and have laws in place to promote the rights to sexual and reproductive health and protection from violence. However, limited resourcing, and opposition to such laws undermine access to these rights for all women. Inadequate disability inclusion within policy and programming, and limited disability awareness of services, further impedes women with disabilities from attaining these rights. The W-DARE project (Women with Disability taking Action on REproductive and sexual health) was a three-year participatory action research program designed to (1) understand the sexual and reproductive health experiences and needs of women with disabilities; and (2) improve access to quality sexual and reproductive health, including violence response services, for women with disabilities in the Philippines. In response to the highlighted need for more information about sexual and reproductive health and greater access to services, the W-DARE team developed and implemented a pilot intervention focused on peer-facilitated Participatory Action Groups (PAGs) for women with disabilities. This paper focuses on the qualitative findings from the evaluation of this PAG intervention.

Résumé

Dans beaucoup de contextes, les femmes handicapées connaissent diverses violations de leurs droits sexuels et génésiques. Les Philippines ont ratifié la Convention relative aux droits des personnes handicapées et mis en place plusieurs lois pour promouvoir les droits des femmes handicapées à la santé sexuelle et génésique et la protection contre la violence. Néanmoins, les ressources limitées dont disposent les services et produits de santé sexuelle et génésique et l’opposition à ces lois contrarient l’accès de toutes les femmes à une santé sexuelle et génésique adaptée. L’insuffisante inclusion du handicap dans les politiques et les programmes de santé sexuelle et génésique et la sensibilisation limitée des prestataires de services au handicap empêchent également les femmes handicapées aux Philippines de réaliser leurs droits à la santé sexuelle et génésique.

Le projet W-Dare (Les femmes handicapées agissent sur la santé sexuelle et génésique) était un programme de trois ans de recherche sur l’action participative destiné à : 1) comprendre les expériences et les besoins des femmes handicapées en matière de santé sexuelle et génésique ; et 2) élargir l’accès des femmes handicapées aux Philippines (Quezon City à Metro Manila, et Ligao City dans la province d’Albay) à une santé sexuelle et génésique de qualité, y compris des services de réponse à la violence. Les femmes handicapées qui ont participé au projet W-Dare ont mis en lumière la nécessité de disposer de plus d’informations sur la santé sexuelle et génésique et de faciliter l’accès à des services qui intègrent les femmes handicapées. En réponse, l’équipe du projet a préparé et appliqué une intervention pilote centrée sur les groupes d’action participative pour les femmes handicapées. Cet article est consacré aux conclusions qualitatives tirées de l’évaluation de cette intervention.

Resumen

En muchos contextos, las mujeres con discapacidad sufren una variedad de violaciones de sus derechos sexuales y reproductivos. Filipinas ratificó la Convención sobre los Derechos de las Personas con Discapacidad y tiene varias leyes establecidas para promover el derecho de las mujeres con discapacidad a la salud sexual y reproductiva y a la protección de violencia. Sin embargo, los recursos e insumos limitados de los servicios de salud sexual y reproductiva, y la oposición a dichas leyes socavan el acceso a salud sexual y reproductiva adecuada para todas las mujeres. Además, la inclusión inadecuada de las personas con discapacidad en las políticas y programas de salud sexual y reproductiva, y los conocimientos limitados de los prestadores de servicios con relación a las discapacidades, impide que las mujeres con discapacidad en Filipinas gocen de sus derechos a la salud sexual y reproductiva.

El proyecto W-DARE (por las siglas en inglés de Women with Disability taking Action on REproductive and sexual health, es decir, Mujeres con discapacidad que toman acción con relación a la salud reproductiva y sexual) fue un programa de tres años de duración de investigación-acción participativa creado para 1) entender las experiencias y necesidades de salud sexual y reproductiva de las mujeres con discapacidad; y 2) mejorar el acceso a servicios de salud sexual y reproductiva de calidad, que incluyen servicios de respuesta a actos de violencia, para mujeres con discapacidad en Filipinas (Ciudad Quezon en Metro Manila y Ciudad Ligao en la Provincia de Albay). Las mujeres con discapacidad involucradas en el proyecto W-DARE destacaron la necesidad de obtener mayor información sobre la salud sexual y reproductiva y mayor acceso a servicios que incluyen a mujeres con discapacidad. En respuesta, el equipo de W-DARE creó y llevó a cabo una intervención piloto enfocada en Grupos de Investigación-Acción Participativa (GIAP) facilitados por pares para mujeres con discapacidad. Este artículo se enfoca en los hallazgos cualitativos de la evaluación de esta intervención.

Keywords:

• sexual and reproductive health
• women with disabilities
• participatory approaches
• disability inclusion
• the Philippines

Introduction

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) has specific provisions related to recognition of reproductive rights (Article 23); access of people with disabilities to sexual and reproductive health information and services (Article 25); and the rights and empowerment of women (Article 6), with Article 32 emphasising the importance of including people with disabilities in development¹. The intersectionality of prejudice and discrimination experienced by women with disabilities on account of their gender and disability means that in many contexts, women with disabilities are more likely to experience violations of their sexual and reproductive rights, compared to women without disability^2–4.

Violations include forced and coerced sterilisation; denial of maternity and parenting rights; denial of legal capacity and decision-making; and a lack of access to sexual and reproductive health services, programmes, information and education⁵. Women with disabilities are also more likely to experience physical and sexual abuse than women without disability^6–9.

In resource-poor settings in particular, sexual and reproductive health programming often inadvertently excludes women with disabilities. Limited context specific data on the experiences and needs of women with disabilities undermines the development of disability inclusive policy and programming. There is also limited evidence and capacity on how best to address barriers to inclusion in sexual and reproductive health programmes. Further, Disabled People’s Organisation (DPOs) and the disability sector more broadly do not often specifically focus on the sexual and reproductive health needs of people with disabilities^2,10,11.

The Philippines ratified the CRPD in 2008 and has developed legal frameworks to promote the rights of women with disabilities to sexual and reproductive health and protection from violence, such as the Magna Carta for Women, the Magna Carta for Persons with Disability, and the Responsible Parenthood and Reproductive Health Act (commonly referred to as the RPRH Law)¹². The RPRH Law mandates universal access to family planning including contraception, education and maternal care. Yet opposition to the RPRH Law and inadequate budget provision for its implementation undermines access to these services for all women in the Philippines¹³. Limited capacity of service providers to provide inclusive services further magnifies these barriers for women with disabilities, and they continue to experience violations of their human rights, especially in relation to sexual and reproductive health and exposure to violence^13–15.

The W-DARE project (Women with Disability taking Action on REproductive and sexual health) was a three-year programme of participatory action research designed to improve access to quality sexual and reproductive health, including violence response services, for women with disabilities in the Philippines¹⁰. W-DARE was implemented by researchers from the School of Population and Global Health at the University of Melbourne and the Social Development Research Center at De La Salle University (Manila).

W-DARE was implemented in District 2 of Quezon City (QC) in Metro Manila, and in Ligao City (LC), a semi-urban district in Albay Province, from 2013 to 2016. District 2 is the largest in QC and is one of the most densely populated districts in the Philippines, with an estimated population of 635,967¹⁶. It includes households from both extremes of the socio-economic spectrum, but overall is relatively disadvantaged with many informal settler families living in the district. LC is a rural and semi-urban district in Albay Province, approximately one hour from the Provincial Capital Legazpi. Running from the foot of Mt. Mayon to the coast in the southwest, the district has a population of 104,914¹⁶.

In line with a rights-based approach and the core belief of the research team that participatory action research on disability should promote respect and empowerment, and to ensure the processes and outcomes represented the views and experience of people with disabilities, the research was conducted in partnership with local DPOs PARE and WOWLEAP¹⁷. Approximately 20 women and men with a range of disabilities were resourced as co-researchers throughout the project. Similarly, to ensure the findings could directly inform more inclusive policy and practice, the W-DARE project worked closely with national non-government service provider Likhaan Center for Women’s Health, and the Center for Women’s Studies Foundation at the University of the Philippines, as well as engaging with relevant government authorities at the national and sub-national level.

The W-DARE project used mixed methods to (1) increase understanding of the prevalence of disability; sexual and reproductive health experiences of women with disabilities; health service needs and experiences of women with disabilities; disability-related attitudes and practices of service providers and (2) assess the effects of pilot interventions designed to increase demand for and supply of quality sexual and reproductive health and violence response services^10,15,18.

Findings from interviews with women with disabilities highlighted numerous barriers to sexual and reproductive health including limited availability of accessible services; women’s limited awareness about sexual and reproductive health and when and how to access appropriate information and services; negative attitudes of service providers and communities in relation to disability and sexual and reproductive health; and experiences of violence and abuse. Women with disabilities also wanted more information about sexual and reproductive health and greater access to services.

To address this, the W-DARE team developed and implemented a pilot intervention focused on peer-facilitated Participatory Action Groups (PAGs) with women with disabilities. This paper focuses on the qualitative findings from the evaluation of this PAG intervention.

Methods

Background to the W-DARE PAG intervention

This intervention began with the hypothesis that peer-facilitated PAGs with women with disabilities that focused on sexual and reproductive health would be associated with an increased demand for quality sexual and reproductive health for women with disabilities. The objectives were to (1) increase participants’ sexual and reproductive health knowledge; (2) increase participants’ awareness of their rights in relation to sexual and reproductive health and disability; (3) increase participants’ confidence to access and negotiate health services; (4) support individual and/or collective action planning to further promote demand for sexual and reproductive health within the women’s communities (as can be achieved with participatory methods)^17,19 and (5) facilitate peer support amongst groups of women with disabilities.

The PAG intervention consisted of supporting a series of ten peer-facilitated meetings for five groups of women with disabilities and one group for parents of children with disability (the latter will not be discussed in this paper). The PAG meetings were held approximately every fortnight over a 20-week period between July 2015 and October 2015, with each meeting lasting for half to a full day. All meetings were participatory, strengths-based and comprised a combination of structured activities and interactive methods to facilitate discussion, with a focus on key factors relevant to sexual and reproductive health needs and rights and protection from violence.

Each session included time for fun activities and social interactions. A local PAG Research Coordinator was recruited to help implement the PAG intervention and oversee logistical arrangements, provide ongoing support to the peer-facilitators and participants, and conduct pre- and post-intervention data collection. The model of peer-facilitated PAGs was based on work undertaken in north-east India that was found to be effective in improving quality of life outcomes with a vulnerable population of women²⁰.

Implementation of the PAGs

A number of female W-DARE co-researchers with disabilities were engaged as PAG facilitators. Additional co-facilitators were recruited through the networks of the local DPO partners with the aim of building the facilitation skills of less experienced women with disabilities. A four-day PAG facilitator training workshop was conducted in January 2015. A manual outlining a number of topics relating to disability and sexual and reproductive health was developed to support the PAG intervention. Facilitators and co-facilitators adapted each session to make it as relevant as possible for the PAG participants and to ensure the material was accessible for each group (i.e. providing material in large print and braille for women with vision impairment and engaging sign language interpreters for women who are Deaf or hard of hearing). The research partner, Likhaan, and other health services and violence response organisations, supported the PAG facilitators to deliver sessions on certain topics, including HIV and sexually transmitted infections (STIs), family planning, and violence prevention and responses.

The PAG participants were recruited through the networks of facilitators, partner DPOs and the Local Government Unit’s Persons with Disability Affairs Office in each research site. The age range of participants was 18–30 years of age. Potential participants were provided with information about the intervention and the requirements of participation. Interested participants were then asked to give their informed consent to participate in the PAG sessions and the associated data collection. All participants were given a small allowance to reimburse their travel and childcare costs or loss of income due to participating in the PAG sessions.

Five PAGs with women with disabilities were established across the two research sites including one group for women who were Deaf or hard of hearing with 16 participants (QC); one group for women with vision impairment with 11 participants (QC); one group for women with mobility impairments with eight participants (QC) and two groups for women with mobility impairments (LC) with a total of 19 women. Fifty-one of the 54 participants completed the intervention, with three women dropping out due to work, illness and moving out of the area.

Evaluation of the PAG groups was conducted using both quantitative and qualitative data collection activities. Quantitative methods utilised a pre- and post-rapid assessment of disability survey¹⁸ combined with an adapted version of the General Sexual Knowledge Questionnaire²¹ to measure baseline levels and subsequent changes in functioning, well-being and participation in community, as well as participants' sexual and reproductive health knowledge. Qualitative methods are described below. This paper specifically presents the findings from the two qualitative data collection activities: stories of change and follow-up interviews.

Data sources

Stories of change: Each PAG participant was asked to participate in an interview at the end of the PAG intervention in September 2015. In this interview participants were asked to describe the most significant change in their lives as a result of participating in the PAG intervention. Each PAG group then participated in a prioritisation exercise and discussed the de-identified stories to select, as a group, stories that represented the most important collective change. Reasons why selected stories were chosen by participants were also documented for each group. Stories were collected from 30 participants in QC and 17 participants in LC who completed the intervention. Four women were not available on the day of data collection and therefore did not contribute stories.

Follow-up interviews: Nine months after the completion of the PAG intervention in June 2016, a sample of PAG facilitators and participants from each group were invited to participate in a face-to-face interview. Participants were asked about whether the important changes they identified at the time the intervention finished had been sustained; other changes or opportunities that had occurred in their lives which they attributed to participation in the PAGs; differences in access to sexual and reproductive health, disability or other services; and whether there had been any negative impacts from participating in the PAGs. A total of 18 follow-up interviews were conducted. Eleven interviews were conducted in QC, including with one facilitator and two participants from the PAG with women who are Deaf or hard of hearing; one facilitator and four participants from the PAG with women with vision impairment; and three participants from the PAG with women with mobility impairment. In LC two PAG facilitators and five PAG participants were interviewed.

Analysis

Data were collected in Filipino and translated into English by the PAG coordinator, who along with two of the Australian based research team, conducted the data analysis. Data were initially reviewed and manually coded in an inductive process based on the research questions. Analysis then shifted to a deductive process of thematic analysis based on themes identified in the empirical material²². Each researcher independently read all transcripts, familiarised and coded the findings under a number of themes identified in the data. Data from each PAG were analysed separately, then comparisons were made between the PAGs with women based on impairment type and between the PAGs implemented in QC and LC. Coded findings were then collaboratively refined to enable identification of the key themes across the data set.

Ethics approval

Ethics approval for the W-DARE programme was obtained from the University of Melbourne Health Sciences Human Ethics Sub Committee and the De La Salle University Ethics Committee in August 2013, with approval for this specific component of the three-year programme obtained in October 2014. Informed consent was obtained from all participants to participate in the PAG and the data collection processes.

Results

Women’s stories

Analysis of the women’s stories highlighted a range of important changes in women’s lives that participants attributed to their participation in the PAGs. Many of these aligned with the objectives of the PAG intervention, such as increased knowledge on sexual and reproductive health and rights, and increased confidence and peer support to access to services. Whilst there were differences in how each PAG collectively prioritised these changes, common themes to emerge across the groups are described in Table 1.

Table 1. Summary of women’s prioritisation of change associated with participating in the PAGs.

Women’s prioritisation of change	PAG with women who are Deaf or hard of hearing	PAG with women with vision impairment	QC PAG with women with mobility impairment	LC PAGs with women with mobility impairment
1st	Increased knowledge on sexual and reproductive health	Enhanced self-confidence	Increased knowledge on the rights of people with disabilities	Enhanced self-confidence
2nd	Increased understanding on prevention of HIV and STIs more specifically	Increased knowledge on protection from violence for women and children with disabilities	Enhanced self-confidence	Increased knowledge on the rights of people with disabilities
3rd	Increased knowledge on protection from violence for women and children with disabilities	Increased knowledge on the rights of people with disabilities	Increased knowledge on protection from violence for women and children with disabilities	Social inclusion associated with the PAG process and enhanced self-confidence

Enhanced self-confidence

More than three quarters of all participants described having gained self-confidence through participating in the PAG. In most cases, enhanced self-confidence was linked to the process of social inclusion whereby the PAGs had provided women with disabilities the opportunity to connect with peers. This opportunity was rare for many of the women and allowed them to realise there were other women with disabilities in their communities, which provided a sense of great comfort and an opportunity for some women to form friendships for the first time. These friendships allowed women to share aspects of their lives with others, contributing to a sense of happiness and reduced stress. Women also described the ways in which new friendships contributed to them having the self-confidence to socially engage with other people in their communities and provided them with peer support that helped them to address life challenges:

“I became happy. It was through [PAG] that I felt that we were not alone. It made me realise that there are others PWD like us … They became my friends … My problems disappear when I’m at the session.” (Story of change, PAG participant with vision impairment, QC)

Self-confidence was also associated with increased knowledge on the rights of women with disabilities, an increased belief in their strengths for self-advocacy, and a growing sense of leadership and responsibility as role models to support other women with disabilities to learn about their rights. This in turn was also described as helping women cope with experiences of discrimination. Enhanced self-confidence was prioritised as the most important change by the PAG with women with vision impairment, and both the PAGs with women with disabilities in LC:

“When I didn’t know yet about these things my self-esteem was very low. I didn’t know how to socialise. The things I wanted to say, I couldn’t say them because I thought that I was always wrong. When I had the opportunity to attend the sessions, there was a boost in my confidence. The ideas that I did not realise I have, I can share them. I learned a lot about laws, my rights as woman and as PWD…I thought that even if we have disability, it is not a hindrance for us to mingle with other people and we can do the things that we want to do.” (Story of change, PAG participant with mobility impairment, LC)

Increased knowledge on the rights of people with disabilities

Nearly half of the PAG participants across the groups highlighted the importance of improved understanding of their rights as people with disabilities, and of the laws in the Philippines which should support these rights. The rights specifically highlighted by women included the right to vote, to work, to have relationships, and the right to have access to sexual and reproductive health including freedom from discrimination and violence for women and children. Increased knowledge on rights was the most important change prioritised by the PAG with women with mobility impairment in QC, and the third most important change prioritised by the PAG with women with vision impairment. For women in Ligao, increased knowledge on the rights of people with disabilities was important for its influence on enhanced self-confidence.

For many women, this was the first time their rights had been explicitly explained to them and the first opportunity they had to understand more about how to promote and protect their own rights. In recognition that their rights do not receive enough attention, some women wanted to go on and advocate for their own rights and share information about rights with other women with disabilities and their families (including partners):

“We need to know our rights as people with disability so we could live with dignity and we cannot be abused or put down by other people.” (Quote from prioritisation exercise, PAG participant with mobility impairment, QC)

Increased knowledge on sexual and reproductive health

Improved knowledge on sexual and reproductive health, including sexual and reproductive rights, knowledge on HIV and other STIs, and family planning were highlighted as an important change by approximately a quarter of the women across all the PAGs, but were particularly prioritised by the PAG with women who are Deaf or hard of hearing. For many women this was the first opportunity to learn about sexual and reproductive health and they were very keen to share this knowledge with other young women with disabilities:

“I didn’t know anything about sexual and reproductive health. I didn’t mingle much with other Deaf people. I have learned so many things that after this, I could help other people. Many Deaf women in our community have difficult lives … actually we are very grateful for what we have learned and we would like to help.” (Story of change, PAG participant who is Deaf or hard of hearing, QC)

Knowledge on sexual and reproductive health was also recognised as particularly important in the Philippines context, especially for women with disabilities and those who experience poverty, as poverty was reported to make it even more difficult for all women to access sexual and reproductive health in the Philippines:

“SRH [sexual and reproductive health] is very important as an issue in itself for poor people, especially women and young people even with disability. [There are] economic barriers to SRH. Many couples do not have access to the family planning services and contraception they need. Many women die from complications of pregnancy and childbirth. Family planning and modern contraception offer choice and opportunity for women to make informed decisions. Enabling young women to avoid pregnancy too early in life. SRH information and services are essential to efforts to prevent HIV and AIDS. People have the right to make their own choices and decisions.” (Quote from prioritisation exercise, PAG participant who is Deaf or hard of hearing, QC)

Increased knowledge on protection from violence for women and children with disability

Knowledge on violence against women and children with disability, in terms of what constitutes violence, safety planning to protect against violence, and accessing support for women who have experienced violence, were all highlighted as important outcomes for all of the PAGs in QC (approximately one quarter of all PAG participants). This was prioritised as the second most important change for the PAG with women with vision impairment, and the third most prioritised changed for the PAG with women who are Deaf or hard of hearing, and the PAG with women with mobility impairment. Many of the women reflected on the intersection between limited knowledge on rights contributing to violence, with some participants reporting knowledge on the right to live a life free from violence as a protective factor. Women looked forward to sharing their knowledge on violence and safety planning with other women with disabilities:

“Violence is connected to rights … It is very common that we heard of women being abused, we should not let that happen. Some of us had experience or are experiencing different forms of abuse. And maybe this time, we will not allow to be abused because we are armed with knowledge about violence and rights. Compared before, we are now more confident to fight for our rights plus the knowledge that there are others who can give us help. We know that discrimination happens in every corner but we are ready to stand up, with our heads held up high because we are stronger and braver … .” (Quote from prioritisation exercise, PAG participant with vision impairment, QC)

Follow-up interviews

Increased access to sexual and reproductive health including protection from violence

PAG participants reported many changes associated with participating in the PAG intervention had been sustained over the nine months between the completion of the intervention and the follow-up interviews. This was particularly true of increased knowledge on the rights of women with disabilities; friendships; and the self-confidence to share sexual and reproductive health information with their peers. Increased utilisation of family planning and violence services by PAG participants, and the peers they had gone on to provide information to, was also reported. One woman described how access to family planning had enabled her to participate in other life domains and reduced the tension within her marriage:

“Because of the family planning method I availed of I have more freedom to go where I want to go, as no longer am constantly pregnant and can overcome the fear of becoming pregnant again … The first one in relation to work, I applied for factory work. I have also enrolled in alternative learning system … and can graduate from school … after PAG there has been many opportunities. My husband used to call me names and tell me I had no use at all, and ask why I didn’t work. But now my husband is very proud of me and what I am doing and I can contribute to family household expenses. I found myself.” (Follow-up interview with PAG participant with vision impairment, QC)

The importance of linking demand side interventions with service providers was emphasised in an example shared by one of the participants. She felt that after one of the service providers participated as a resource person in one of the PAG sessions, their willingness and capacity to provide services for women with disabilities had improved. The women also reported more confidence to assert their rights, particularly in relation to accessing health services:

“I have been accessing the health center for family planning as a result of what I learnt in the PAGs. After PAG sessions, I had treatment from the Barangay health services, and their treatment has tremendously improved. I think the PAG sessions helped in improving the treatment of handling of service providers to women with disability, because Dr L as she was invited as a resource person to one of the PAG sessions, so her understanding of disability was improved.” (Follow-up interview with PAG participant with vision impairment, QC)

For some women, participation in the PAGs has given them the knowledge and confidence to pursue justice in response to experiences of abuse. Accessing justice for these women remains incredibly challenging. Indeed, even if successful in pursuing justice and leaving violent partners, and being linked in to local services, life continues to be challenging:

“My husband is now in jail as I filed a complaint against him for domestic violence. If he will pay the bail of 120,000 he can be released on probation, but if not he will be in jail for six years. [I: Are you able to support yourself and your children without him?] I wish I could, the incident was recent, not yet a month, I am able to provide for them for now, but I feel uncertain after this … Because I learnt about my rights and I shouldn’t be treated or looked down upon.” (Follow-up interview with participant from the PAG with women with mobility impairment, LC)

Many of the women though felt the PAG intervention needed to be longer and include more exposure to available services in order to support more effective and sustained knowledge transfer, ongoing empowerment, and more capacity to promote their social safety and protection from violence.

Sustained social inclusion

Opportunities for social inclusion and friendships had been sustained for many of the women. Yet the level of inclusion seemed to vary depending on a number of factors such as individual agency; physical accessibility of communities; economic resources to keep in contact with friends and family support or lack thereof. There was one example where a mother, challenged by the growing independence of her daughter, had physically abused a participant after she had attended a social function. This may be why some interview participants recommended there should be awareness raising sessions for parents as well:

“My mama is a bit suspicious when I tell her I am going out … There was an incident that I attended a birthday party of one of my fellow PAG participants, after work I went directly to M’s house … Because of this incident, my mama hit me and was outraged.” (Follow-up interview with PAG participant with vision impairment, QC)

Increased participation in communities

For some PAG participants, the intervention created numerous opportunities to participate in their communities and contribute to advocacy activities in relation to disability. Two of the women interviewed had gone on to mobilise people with disabilities in their community and are hoping to register as a Disabled Persons’ Organisation. Another woman went on to establish her own Sari Sari store (small convenience store) using the money she had saved from the PAG session travel allowance. For others, however, particularly in LC, there are limited opportunities available for women with disabilities to participate in their communities. Family responsibility, limited agency and geographical isolation prevented community participation and also prevented access to required health services:

“I remember our good relationship with our fellow PAG members, I was also happy during the PAG sessions especially when we are sharing commonalities and working together. There is no chance in meeting them or texting them as I don’t have a cell phone, so I can only meet them during the sessions … When I am having a bout [seizures], I sleep, and after that I regain my strength and headache is gone and I feel lighter. The Naga hospital is a long way away, and the City Hall hospital, I am too busy looking after my family.” (Follow-up interview with participant from the PAG with women with mobility impairment, LC)

The ongoing barriers for women with disabilities accessing other community domains such as employment, despite having an awareness of their rights, were also described:

“Actually it [PAG intervention] has inspired me to be a social worker someday, but I don’t know how. … It’s hard actually as many companies are not aware about Deaf people and they don’t accept us. One time I went to a company and they realised I was Deaf and they just waved their hands at me and said no we do not accept Deaf people … After knowing my rights in PAG, I was very sad.” (Follow-up interview with PAG participant who was Deaf or hard of hearing)

Discussion

The W-DARE PAG intervention led to positive outcomes for women with disabilities including increased knowledge and access to sexual and reproductive health including protection from violence; improved social inclusion and participation in communities; enhance self-confidence and independence. The sustainability of these changes, however, varied between individuals, and was influenced by factors such as individual capacity and agency; availability of resources including economic resources to support ongoing communication and connections with PAG participants; accessibility of communities; family responsibilities and support for social inclusion; and geographical location. Increased access to information, enhanced social networks and opportunities for participation have been highlighted as essential for upholding the rights, and sexual and reproductive health rights of women with disabilities⁵.

Social inclusion was supported by geographical proximity such as being part of the same geographical community; the presence of existing local networks such as belonging to the same church or community organisation; but also family support. Families were not always supportive of their family members with disability participating in social gatherings or encouraging of their independence. A number of participants emphasised the importance of awareness raising on the rights of persons with disability, not only for women with disabilities and service providers, but for their families and communities as well^7,23.

It was clearly more challenging for people with more significant impairments, particularly mobility impairment, to overcome environmental and social barriers to sustain social contact with other participants over time. Whilst this did not seem to negate the positive experience reported from the PAGs, it does highlight the continued challenges people with disabilities experience in being included in their communities. As in other contexts, this has broader implications for the attainment of other rights such as access to education, livelihoods, and health and social services⁴. Similarly, women in rural LC appeared to have fewer support mechanisms to help them sustain or build on changes that occurred through the PAG. Whilst the local government is fairly strong in their recognition of disability and in their efforts to promote inclusion, other mechanisms, such as mobilisation of people with disabilities and employment opportunities, are less developed, making it more difficult for the women to go onto participate in their communities.

Through the PAGs, women learnt more about their rights, including in relation to protection from violence. This knowledge and also the support provided through the PAGs motivated a small number of women to file complaints in relation to their experiences of abuse. Whilst some of these cases are still pending, at least one has led to the conviction and imprisonment of the perpetrator. This case not only highlights the importance of providing adequate support for women to navigate the justice system, but also to provide ongoing support in relation to meeting basic needs. As highlighted by the work of Camillieri, if perpetrators are not brought to justice for the crimes they commit against women with disabilities, it reinforces the notion that women with disabilities are “easy targets” that are not supported to report violence or pursue justice²⁴.

Whilst a vital aspect of promoting the rights of persons with disability, increased individual awareness of rights does not automatically lead to the attainment of these rights. In contexts such as the Philippines, systems and resources for universal access to health care, social protection and education are far from inclusive of people with disabilities^7,25,26. Such systems require significant strengthening and support to address multiple barriers for people with disabilities, so they can then access services that enable them to participate in and contribute to their communities on an equal basis with others.

Some of these factors are being addressed by other W-DARE activities including a PAG with parents of children with disability to improve the knowledge of parents on the rights of people with disabilities and how they can support their children to achieve quality sexual and reproductive health and prevention of violence; capacity building for health and violence response service providers to improve their understanding of disability and capacity to identify and address barriers to services for women with disabilities, to promote more inclusive practices and referral systems; building the capacity of local government units to incorporate disability inclusion into their policy and programming through disability awareness raising and peer-to-peer exchange activities; and promoting positive community awareness about disability and the sexual and reproductive health rights of women with disabilities through the production of advocacy videos (see link to W-DARE videos at²⁷).

Other aspects of the wider environment in which women with disabilities live, such as their access to economic resources, are to some extent being addressed by local government initiatives to increase inclusion in livelihood and employment programmes and increase access to government social protection initiatives. Continued efforts are required to improve inclusion of women and children with disabilities within local level Gender and Development programs, as well as in violence against women and children reporting systems.

For these actions to have a lasting impact on improving access to quality sexual and reproductive health for women with disabilities, there is an urgent need to address systemic barriers to their participation in all other life domains such as education, employment and general health programmes. For this to be achieved, governments, service providers, DPOs and development programmers need to work alongside women with disabilities to understand more about their experiences, needs and priorities. This will enable joint identification of context specific barriers to their participation across these life domains, as well as the development of local solutions to reduce barriers and promote inclusion of people with disabilities within their communities⁴.

Acknowledgements

The authors would like to thank all participants, and the entire W-DARE data collection team for their contribution to data collection and early analysis of research findings.

Additional information

Funding

W-DARE is funded by the Department of Foreign Affairs and Trade, Australian Government through the Australian Development Research Awards Scheme under an award titled Sexual and Reproductive Health of Women with Disability in the Philippines: Building evidence for action. The UNFPA Philippines Country Office also contributed to the funding of W-DARE.