Rising voices Mainstreaming women with disabilities in India-EU international cooperation
Full report Recommendations from Building Partnerships for the Sustainable Development Goals (SDGs) – Empowering Disabled People’s Organisations, an India-EU international cooperation and SDGs implementation project.
About the European About Sightsavers India Disability Forum Sightsavers is an international organisation The European Disability Forum is an working with partners in developing umbrella organisation of persons with countries to eliminate avoidable blindness disabilities that defends the interests of and promote equality of opportunity for over 100 million persons with disabilities people with disabilities. In India since 1966, in Europe. A unique platform, it brings Sightsavers’ work has enabled thousands of together representative organisations of people to lead independent and dignified persons with disabilities from across Europe. lives. We have been working with local EDF is run by persons with disabilities and partners in 100 districts across eight states their families to ensure a strong, united of India to strengthen organisations voice of persons with disabilities in Europe. and communities. www.edf-feph.org
2 Rising voices Contents
04 54 Foreword Recommendations
06 55 Acknowledgements India
07 60 Frequent abbreviations European Union
08 63 Introduction Conclusion
10 65 About this paper References
11 The India-EU partnership
12 Building Partnerships for the Sustainable Development Goals – Empowering Disabled People’s Organisations
14 Key policy and legal frameworks
18 Evidence
19 Areas of discrimination
36 Cover image: Indu, who has had an Good practices orthopaedic disability since birth, received training on making bangles 50 and clothes. Way forward © Sightsavers
3 Foreword
People with disabilities have the right to play a full and active part in society. To this end, it is important that governments provide the right environment, support and facilities. This view is beginning to be accepted across the world, underpinned by the universal adoption of the Sustainable Development Goals and their overarching objective that ‘no one is left behind’. The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that it is the physical, cultural and social barriers to the participation of persons with disabilities, which is at the root of disablement or exclusion, rather than the disability itself.
According to India’s 2011 census, 26.8 National Family Health Survey (NFHS) data million people in the country are recognised indicates that over 30% of Indian women as having a disability, which is 2.21% of the have been physically, sexually or emotionally total population. In Europe there are more abused by their husbands at some point. than 80 million people with disabilities out Girls and boys with disabilities are nearly of a population of 446 million. In the EU, three times more likely to be subjected the overall employment rate is expected to sexual violence, with girls being at the to reach 75% in 2020. However, only greatest risk. Women with disabilities often about 47% of people with disabilities are report about not being able to receive the employed, compared with 72% of people health care services they need. They face without disabilities. a range of barriers in accessing health care, including lack of accessible health Inclusive development is a priority for information, inaccessible facilities or facilities the European Union. The EU supports too far from home, a lack of privacy and a number of initiatives across the world confidentiality, a lack of affordability and aimed at empowering people with negative attitudes from health care workers. disabilities, including this one. This report comes at a time when the global crisis Sightsavers India and the European of COVID-19 is deepening pre-existing Disability Forum (EDF) are jointly inequalities exposing the extent of implementing the project ‘Building exclusion: highlighting work on disability Partnerships for Sustainable development inclusion becomes all the more imperative. Goals – Empowering Disabled People’s Organisations’ supported by the European According to the Survey of Persons with Union. The project supports people with Disabilities conducted by the National disabilities to engage in, shape and monitor Statistical Office (NSO) of India in December the implementation of the Sustainable 2018, the Labour Force Participation Rate Development Goals (SDGs) in India. among women with disabilities is 8% versus 36.8% for men with disabilities in rural India. This joint paper on women with disabilities While the overall literacy rate of people has been developed in the framework of with disabilities is 3%, the UN Educational, the project. It aims at bringing the voices of Scientific and Cultural Organization women with disabilities to the fore. It details (UNESCO) estimates that it is just 1% for how supporting women to know their rights women and girls with disabilities. has helped them to stand up for themselves,
4 Rising voices ©Sightsavers/Atul Loke
Community health worker Madhumita conducts an awareness programme for local women on Sagar Island, West Bengal, about how women with disabilities deserve equal opportunities.
gain independence and aid others. It also clearly highlights the untapped potential of women with disabilities and their critical role in the implementation of the SDGs and in international cooperation. Furthermore, it features the struggles and challenges they face and celebrates their strength, abilities, resilience and victories. By Ambassador Ugo Astuto sharing these stories, it tries to convey the EU ambassador to India transformational impact that engagement in the SDG processes can have on individual lives and on society at large.
5 Acknowledgements
We would like to thank the following for their contributions to this report:
The 15 women Disabled People’s • Gertrude Oforiwa Fefoame, member of Organisation (DPO) (or organisations of the United Nations (UN) Convention on people with disabilities) members from the Rights of Persons with Disabilities Jharkhand, Odisha and Rajasthan who (CRPD) Expert Committee. Global agreed to participate in focus group Advocacy Adviser – Social Inclusion at discussions and in-depth interviews. Sightsavers. President of the International They shared their stories and testimonies Council for Education of People with around SDG implementation, accessibility, Visual Impairment (ICEVI) Africa. Board participation and empowerment. member of the Ghana Federation of Their voices bring deeper insights to Disability Organisations (GFD). understanding the challenges, concerns and triumphs of women with disabilities • Nidhi Goyal, Founder and Executive in rural India. We salute them for their Director of Rising Flame, an Indian non- honesty and courage. profit working for the rights of women and youths with disabilities. Member The Building Partnerships Advisory Group of the core group on persons with members for their guidance and shaping of disabilities and elderly persons by the the paper, for identifying valuable resources, National Human Rights Commission, and for making valuable recommendations India. Member of the UN Women global to strengthen the report: multi-stakeholder steering committee • Dr Shubhangi Vaidya, Associate of the Generation Equality Forum in Professor and Director in the School of the Beijing+25 process and the UN Interdisciplinary and Trans-Disciplinary Women Executive Director’s Civil Society Studies, Indira Gandhi National Open Advisory Group. Board President of the University (IGNOU), Delhi. Association for Women’s Rights in Development (AWID). • Nadia Hadad, Vice President of the Brussels City Advisory Council of Anjlee Agarwal, disability rights activist, Persons with Disabilities. Member of the researcher and co-founder, Samarthyam, Executive Committee of the European a DPO promoting accessible and inclusive Disability Forum (EDF). Board member environments. Member of the National of the European Network on Institution for Transforming India (NITI Independent Living (ENIL). Aayog), Government of India, Co-ordinator of the Working Group on Disability, Health, • Meenakshi Balasubramanian, Founder, Nutrition and Sanitation with a focus Trustee and Coordinator Projects at on girls and women with disabilities. D. Equals – Centre for Promotion of Social Chakravarti, Director, Samarthyam, for the Justice in Chennai, a DPO working on field research and compilation of the 15 legal harmonisation and budget advocacy case studies and testimonials. in India. Fellow at the Center for Inclusive Policy, Washington.
6 Rising voices European Disability Forum staff – Dr Marion Steff, International Cooperation Manager, and Lucia D’Arino, International Cooperation Frequent abbreviations and Communications Officer, for providing • CEDAW - Convention on the valuable data and information on European Elimination of Discrimination Union (EU) legislative frameworks Against Women and recommendations regarding EU international cooperation. • CRC - Convention on the Rights of the Child Sightsavers India staff – Namrata Mehta, EU Project Manager, for coordinating • CRPD - Convention on the Rights the collection of data and information of Persons with Disabilities from Jharkhand, Odisha and Rajasthan. Sightsavers EU Project Staff – Jharkhand, • DAC - Development Odisha and Rajasthan. Prasanna Kumar PN, Assistance Committee Director – Programme Operations, for his support and oversight. • DPO - Disabled People’s Organisations (or organisations Sightsavers global staff – Nalini Vaz, Global of people with disabilities) Advocacy Adviser, for leading this process on behalf of Sightsavers. Fred Smith, Head • EC - European Commission of Policy, for technical assistance and contributing to the design of the survey • EU - European Union data collection tool and the analysis of the • NCPEDP - National Committee data. Juliet Milgate, Director of Policy and for the Rights of Persons Advocacy; Sarah Bourn, Editorial manager with Disabilities and Hannah Loryman, Policy Adviser – Social Inclusion, for their valuable technical • OECD - Organisation for Economic assistance and support in drafting the report. Co-operation and Development
Sightsavers design team – Efi Alamanos, • RPWD - Act Rights of Persons Isabel Downing, Alice Kaley-Burton with Disabilities Act
The Communications Team at Sightsavers • RTE - Right of Children to Free India for formatting and designing the and Compulsory Education Act report, with Pritika Malik, Designer, and Rishibha Gupta, Manager, Brands • SDG - Sustainable & Communications. Development Goal
Thanks to Isabella Montgomery for drafting • UN - United Nations the report and Naomi Marks for copy editing it. • WHO - World Health Organization
7 Girls with visual impairments demonstrate various self defence techniques at an event organised in New Delhi.
Introduction
“I want to be head of Gender Committee formed under the SDG-CRPD framework training in my state. I feel knowledgeable and empowered due to information that has been given to connect from ‘local to global’ issues of women with disabilities. I learnt during the disability inclusive SDG score card process that ‘united we stand together’ and alone we cannot uphold all our rights!” Richa, DPO member, Jharkhand.
The adoption of the 2030 Agenda for interventions to prioritise those left behind, Sustainable Development1 (the 2030 little is known about who those left behind Agenda) in 2015 marked a new phase are, or how to ensure their inclusion. of shared ambition for sustainable Understanding who is left behind is complex development. A global framework to as there is limited attention and data on guide development policy and practice to these population groups. A recent study on 2030, the Agenda and its 17 Sustainable the SDGs’ status among less recognised, Development Goals (SDGs) are a global invisible and excluded population groups call to action to end poverty, to protect the in India, identified 20 socially-excluded planet and to ensure peace and prosperity population groups, including people with for everyone, everywhere. disabilities and marginalised women.3
Central to the 2030 Agenda is a commitment Belonging to both these groups, women to inclusion with its pledge that ‘no one and girls with disabilities face an increased will be left behind’. However, participation likelihood of experiencing multiple and of those left behind in the 2030 Agenda is intersectional forms of discrimination. low, suggesting that this core principle is not However, the discrimination they face as being implemented and that governments women with disabilities does not equate have not succeeded in running inclusive simply to adding both these aspects of processes focused on the most marginalised discrimination together. Intersectional people.2 Moreover, while the framework discrimination can be qualitatively different, emphasises the need for development or synergistic.4 As a result, “targeted
8 Rising voices ©Sightsavers/ Subhash Sharma
Girls with visual impairments demonstrate various self defence techniques at an event organised in New Delhi.
measures with respect to disaggregated interaction with various barriers, may hinder data collection, consultation, policymaking, a person’s full and effective participation in enforceability of non-discrimination society on an equal basis with others”.10 and provision of effective remedies” are required.5 In an era where inclusive development is emphasised as a key component of According to India’s 2011 census, 26.8 sustainable development, focused initiatives million people in the country are recognised for promoting gender equality are essential as having a disability, which is 2.21 per cent to achieve the 2030 Agenda. Furthermore, of the total population.6 However, this is for gender equality and empowerment to likely to be a significant under-estimation, as become a reality for all women and girls, it is globally the prevalence of disability is 15 per crucial that the specific concerns of women cent.7 The World Bank notes that the actual and girls with disabilities are mainstreamed prevalence of disability in India could easily across the entire 2030 Agenda framework be around 40 million people and perhaps as and considered across all targets of SDG 5, high as 80 to 90 million.8 In Europe, there are which focuses on gender equality. more than 80 million people with disabilities out of a population of 446 million.9
The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) recognises that disability is an evolving concept. It sees disability as a 26.8 result of the interaction between people with impairments and attitudinal and million environmental barriers that hinder their people in India full and effective participation in society on an equal basis with others. It refers to have a disability disability as “the long-term physical, mental, intellectual or sensory impairments which, in
9 About this paper This paper is informed by the findings of Building Partnerships for the Sustainable Development Goals – Empowering Disabled People’s Organisations, a European Union- (EU) funded project jointly undertaken by Sightsavers India and the European Disability Forum (EDF).The project supports people with disabilities to engage in, shape and monitor the implementation of the 2030 Agenda.
The paper aims to bring the voices of difficult for many people with disabilities to women with disabilities to the fore. It details access and join DPO networks, particularly how supporting women with disabilities to for people with intellectual or psychosocial know their rights has helped them to stand impairments. The review of EU policy on up for themselves, gain independence and international cooperation was undertaken by support others. It highlights the specific EDF. An advisory panel of experts, made up struggles and challenges they face, and of disability experts from both India and the celebrates their strength, abilities, resilience EU, helped to guide the process and review and victories. By sharing the stories of the findings and recommendations. women with disabilities, it intends to convey the transformational impact that The real names and identifying details of engagement in the SDGs processes can the women participants in the case studies have on these women’s lives. It clearly have been changed to protect privacy and highlights the untapped potential of women ensure confidentiality. This is especially true with disabilities and their critical role in the of the section on ‘areas of discrimination’. implementation of the SDGs, the CRPD and However, we have used the real names in EU international cooperation. of women participants in the section on ‘good practices’ to acknowledge their The methodology used to gather the accomplishments and successes, which they findings included a mix of primary and are really proud to share. secondary document reviews, including formal legislation and relevant literature. A range of relevant legislation and policy Interview guides were created with a stipulations are referenced throughout focus on education, employment, health, this document. Please note that it may gender and violence, and best practices. not be exhaustive. The case studies from three states in India (Jharkhand, Odisha and Rajasthan) were developed through one-to-one interviews and focus group discussions led by Anjlee Agarwal. Anjlee is a woman living with a disability and leads Samarthyam, an Indian Disabled People’s Organisation (DPO) and a close partner in the Building Partnerships project. The case studies in this report represent the experiences of the women we met but do not represent all women and girls with disabilities. Nor do the DPO networks represent all disabilities, a limitation openly acknowledged. It is still
10 Rising voices ©Sightsavers/Arko Datto
Sudama, who has a visual impairment, and her sister-in-law Sapna outside her home in Madhya Pradesh. Sudama took part in a self-defence and judo training project run by Sightsavers and a local disability organisation, which is helping her gain independence.
The India-EU partnership Together, the EU and India represent a Most recently, in 2018, the EU released a population of close to two billion people, Joint Communication which outlined how reflecting a “considerable reservoir of it would work with India to strengthen economic growth and a huge potential a Strategic Partnership Agreement by to influence positively the course of focusing on sustainable modernisation human development”.11 and addressing global challenges together. Sustainable development is increasingly India-EU cooperation focuses on the focus for the partnership, informed issues of democracy, human rights, by the shared aspirations of the 2030 fundamental freedoms and multilateralism. Agenda, which has framed the work of the This relationship is based on a 1994 partnership within a broader perspective. Cooperation Agreement, which was Building Partnerships for the Sustainable upgraded to a Strategic Partnership in Development Goals Empowering Disabled 2004.12, 13 The partnership has evolved over People’s Organisations.16,17,18 recent years, with enhanced commitment from both sides. An ambitious Agenda for Action 2020 was jointly adopted at the 2016 EU-India Summit, and at the October 2017 EU-India Summit the two sides agreed a Joint Statement detailing a common vision of global governance, shared values and principles.14, 15
11 ©Sightsavers/Arko Datto
Sisters Janki and Shanti walk through the fields near their home. They started learning self- defence and judo so they could go out and about in their community more freely.
Building Partnerships for the Sustainable Development Goals – Empowering Disabled People’s Organisations The Building Partnerships for the Sustainable Development Goals – Empowering Disabled People’s Organisations (referred to as Building Partnerships) project aims to boost the participation of DPOs in SDG processes, and support India and the EU with SDG implementation and monitoring. DPOs play a vital role in promoting and safeguarding the fundamental rights of women, men and children with disabilities. However, within Indian DPOs there is often a lack of awareness of rights and legal frameworks, as well as a lack of capacity to fully engage in policy processes and to hold duty bearers to account.
12 Rising voices Women, girls and the 2030 Agenda
Gender is referenced throughout the 2030 Agenda, with Goal 5 dedicated to achieving gender equality and empowering all women and girls.
Goal 5 calls for: • An end to all forms of discrimination • The full participation in decision- against women and girls. making, and equal opportunities for leadership, in political, economic and • The elimination of all forms of violence public life. and all harmful practices against women and girls. • Universal access to sexual and reproductive health. • Recognition of the value of unpaid care and domestic work. • Equal rights to economic empowerment.
By the end of 2020, Building Partnerships This informs the findings and will have engaged 15 DPOs and 14,000 recommendations in this paper, which people across five Indian states to advocate draws on two Building Partnerships for disability rights and improve access to initiatives, an SDGs disability inclusive government development schemes and scorecard process, and a DPO gender entitlements, such as social protection assessment. These two activities focused programmes, equal job opportunities, on raising awareness of the rights of decent work conditions and equal women with disabilities. participation in democratic processes. The project also aims to establish, strengthen and stimulate policy dialogue and partnership between Indian DPOs and EU institutions and member states, bringing the voices of India’s DPOs to an international stage and ensuring that information on global processes reaches grassroots activists.
Building Partnerships includes a component on women with disabilities. This aims to build the capacity of rural women DPO leaders in order to: • enhance their leadership skills.
• engage with Indian policymakers at national and state government level.
• partner with EDF to advocate on EU policy dialogue relative to disability inclusion in EU international cooperation.
13 Key policy and legal frameworks Several key international policy and legal frameworks have the potential to increase accountability and disability inclusive development, from the bottom up.
1. The 2030 Agenda for agenda is reflected in them.20 India Sustainable Development participated in the 2016, 2017 and 2019 meetings of the High-Level Political The 2030 Agenda could be a game- Forum and presented its first voluntary 21 changer for marginalised and hard- national review (VNR) in 2017. This to-reach people, with its central focused on the Indian Government’s commitment to leave no one behind and multipronged initiatives to progress the pledge to reach the furthest behind towards the ambitious targets set first. The disability rights movement under the SDGs. However, people successfully advocated for the inclusion with disabilities were not consulted of disability during the framework’s during the 2017 VNR process. India will extensive consultation process. present its second VNR in 2020 and Disability is specifically referenced in extensive consultations with civil society the Declaration to the 2030 Agenda are currently under way, including with in the paragraphs on human rights, people with disabilities. empowerment and education, and in the Goals on quality education, decent work, 2. The UN Convention on the reducing inequality, sustainable cities and Rights of Persons with Disabilities communities (for accessible transport and public spaces) and partnership for The CRPD lies at the heart of disability the Goals (to increase the availability of rights campaigning. Adopted in 2006 by disaggregated data). the UN, it became the world’s fastest- ratified human rights treaty. It reaffirms The EU played an influential role in the that all people with disabilities must negotiations of the 2030 Agenda and has enjoy all human rights and fundamental committed to implementing the SDGs in freedoms, including to participate in its internal and external policies. In 2017, civil, political, economic, social and it launched the innovative Bridging the cultural life of the community. The 19 Gap programme. In line with the 2030 CRPD clearly stipulates what public and Agenda and the CRPD, this programme private authorities must do to ensure promotes the rights, participation and and promote the full enjoyment of these inclusion of people with disabilities and rights by all people with disabilities. works to build the capacity of women with disabilities. However, the EU has India ratified the CRPD in October 2007. yet to develop an overarching vision to In 2016, almost a decade later, the guide implementation and monitoring of Indian Parliament passed the Rights of the SDGs in its strategies and policies. Persons with Disabilities Act (RPWD Act), Guidance to ensure the active engagement the disability legislation needed to fulfil and participation of people with disabilities the country’s obligation to the CRPD.22 in the SDGs is required, too. The RPWD Act emphasises human rights principles, reflecting a paradigm shift in India also played a prominent role in the formulation of the SDGs and much thinking about disability from a social of the country’s national development welfare concern to a human rights issue.
14 Rising voices However, the enforcement of many of its that the EU interrupt any international laws and provisions remains a challenge development funding being used to and the enjoyment of rights by women perpetuate the segregation of people and girls with disabilities remains some with disabilities and re-allocate such way off to being realised.23 funding towards projects and initiatives that aim to comply with the CRPD. India’s initial CRPD country report under article 35 of the Convention was due in 2011, but only submitted in Women and girls with 2015.24 The review process for India by disabilities and the CRPD the Committee on the Rights of Persons The CRPD recognises that with Disabilities (the CRPD Committee) international and national laws and took place during the 22nd session policies on disability have neglected of the CRPD Committee in 2019. aspects related to women and girls The CRPD Committee highlighted with disabilities. The Convention positive developments, including also recognises that women and girls making disability inclusion a component with disabilities are often at greater of several international cooperation risk of violence, abuse, neglect or programmes. It also made a number of exploitation. recommendations, specifically regarding women and girls with disabilities, It calls for signatories to: including to strengthen measures to address multiple and intersectional • Uphold equality between forms of discrimination, adopt national men and women in the and state action plans, establish implementation of all rights gender-responsive policies and budget in the CRPD. allocations, and ensure the participation • Ensure that women and girls of women with disabilities in decision- with disabilities can fully enjoy all making and policymaking at all levels. human rights and freedoms. The EU ratified the CRPD in December • Create legislation and policies 2010, making the Convention the first to identify, investi-gate, and international human rights treaty to prosecute violence against have been ratified by a regional political people with disabilities, including body. The EU submitted its first report women- and child-focused in 2014.25 The CRPD Committee’s legislation and policies. concluding observations noted the EU’s action as a positive trend and highlighted • Provide people with disabilities the EU’s commitment to including with the same range, quality and people with disabilities in international standard of free or affordable cooperation.26 It recommended that health care and programmes as the EU adopt a harmonised policy others, including in the area of on disability-inclusive development, sexual and reproductive health. mainstream the rights of people with • Ensure that people with disabilities in all EU international disabilities, particularly women and cooperation policies and programmes, girls with disabilities, have access appoint disability focal points, and put to social protection and poverty in place mechanisms to disaggregate reduction programmes. data on disability. It also recommended
15 On women with disabilities, specifically, discrimination faced by certain groups it expressed concern that the EU of people with disabilities, particularly had neither mainstreamed a disability with regards to women and girls, lesbian, perspective in all its gender policies, gay, bisexual, transgender/transsexual, programmes and strategies, nor adopted intersex and queer/questioning (LGBTIQ) a gender perspective in its disability people, migrants and refugees, and strategies. It recommended affirmative ethnic minorities. action to advance the rights of women and girls with disabilities, establishing In March 2020, the EU started a a mechanism to fund data collection consultation about the next ‘Gender and research and to monitor progress, equality & women’s rights worldwide and to accede to the Council of – 2021-25 action plan’. This initiative Europe Convention on preventing and reaffirms gender equality/women’s rights combating violence against women and as a key strand of EU foreign policy, domestic violence. building on the Commission’s previous gender action plans. Women and girls In 2016, the European Economic and with disabilities must be included in this Social Committee released an opinion new action plan. piece on the concluding observations of the CRPD Committee written by EDF 3. The UN Convention on the President, Ioannis Vardakastanis, ‘A new Elimination of Discrimination strategy for persons with disabilities in Against Women the European Union’.27 It recommended integrating the 2030 Agenda into the Often described as the international bill revised European Disability Strategy and of rights for women, the UN Convention establishing European targets and actions on the Elimination of Discrimination to achieve the SDGs. It called on the Against Women (CEDAW) is the primary European Commission (EC) to develop international legal instrument on the specific initiatives on the 2030 Agenda elimination of discrimination against and on people with disabilities within women and the promotion of equal the EU, as well as in its external policies, rights for women. Its 1991 General including development cooperation and Recommendation no.18 on women with international trade. It also emphasised disabilities requests all states parties to that the perspective of women and girls CEDAW provide information on women with disabilities should be included in with disabilities in their reports, and in gender equality policy, including the data particular on measures to ensure equal collection efforts of the European Gender access to education, employment, health Equality Institute. services and social security, and full participation in social and cultural life. In January 2020, the European Commissioner for Equality, Helena In 2018, Ana Peláez Narváez, Vice- Dalli, confirmed that the EC will publish President of EDF and Chairperson of its a new and strengthened European Women’s Committee, became the first Disability Strategy post 2020. This person with a disability to be elected as commitment was presented in her a member of the CEDAW Committee. speech at the conference, Towards This election marked a turning point in Inclusion 2020.28,29 EDF is advocating for the representation and interests of 600 strong and inclusive work in international million women with disabilities worldwide, cooperation, covering intersectional enhancing their visibility and awareness.
16 Rising voices ©EDF 4. The UN Convention on the Rights of the Child
The UN Convention on the Rights of the Child (CRC) is the world’s most comprehensive children’s rights framework and the most widely ratified international human rights treaty. It recognises education as a right of every child and guarantees free compulsory primary education for all, available and accessible secondary education to all, and higher education based on capacity. Article 23 outlines provisions for children with disabilities, including their rights to a full and decent life, special care and assistance. It also requires states to Ana Peláez Narváez, vice-president of promote the exchange of information EDF and chairperson of its Women’s around disability and health care in the Committee, is the first person with a spirit of international cooperation. disability to be elected as a member of the Committee on the Elimination of The CRC has been ratified by all EU Discrimination Against Women. countries and India. The EU’s Charter of Fundamental Rights guarantees the In August that same year, concerned at protection of the rights of the child by the increasingly challenging environment EU institutions and EU countries as part for international human rights, the CRPD of EU law. India ratified the CRC in 1992 Committee and CEDAW Committee and enacted the Right of Children to released a joint statement: ‘Guaranteeing Free and Compulsory Education (RTE) sexual and reproductive health and rights Act in 2009. for all women, in particular women with disabilities’.30 It noted with concern that there remain considerable gaps across all regions in the protection of these fundamental rights and freedoms, and called on countries to increase their efforts to defend them.
17 ©Sightsavers/Tim Fransham
Prem cleans wheat at her home in Raisen after sight-saving cataract surgery in Bhopal, India.
Evidence
“I will connect with more women in the field and make them aware about their rights and to STOP violence at home and in the community. I want to work on the SDGs that promote health and wellbeing. I will promote rights-based advocacy focusing on sexual and reproductive human rights in the field.” Asha, 27, DPO member, Rajasthan
The voices of women with disabilities too The 15 women were further asked often remain unheard. To understand about their involvement in DPOs, local some of the issues they face and bring accountability mechanisms, and wider their voices to the fore, 15 female networks and systems. Their responses DPO members from three Indian states included stories of empowerment, newly were interviewed about their lives and gained independence and personal experiences. Part of the interviews transformation. The ‘good practices’ section focused on four key SDG themes: violence, explores the elements that emerged as key education, health and employment. The to enabling these successes. stories that emerged highlight the many barriers that women with disabilities The final section of this chapter builds on continue to face. Issues relating to the this evidence to outline the issues and family also emerged as an important theme gaps that these findings highlight for SDG and are explored in this chapter. implementation in India and the EU.
18 Rising voices Areas of discrimination Areas of discrimination The nature of discrimination a person experiences depends on a complex interplay of the many factors relating to their place in society and their identity. For example, there is a strong link between disability and gender inequality.
Women with disabilities experience and within women’s groups. Class and discrimination based on their gender geography also play a role for women and on their disability, as well as specific with disabilities from urban, middle- forms of discrimination based on them class backgrounds who may have being women with disabilities. While greater access to education, health a significant portion of women and and employment. Gender stereotypes girls are born with disabilities, others negatively impact on women with experience disability as a result of disabilities, and women with disabilities exposure to gender-related risk factors, face significantly higher barriers including a lack of access to sexual and to participation than their non- reproductive health services, exposure disabled peers.32,33 to violence and harmful practices, and a gender-biased distribution of resources Photo contribution: Rising Flame within households.31
India, despite making progress in developments in the past three decades, lags on gender equality. Persistent issues include dowry, female infanticide, women’s education and domes-tic violence, despite decades of successive governments’ efforts to address them.
Inequality is further exacerbated for women and girls with disabilities Nidhi Goyal, founder and executive who experience other forms of director of Rising Flame, presents marginalisation, including as LGBTIQ, issues of violence and access to justice ethnic minorities, older people, in India to the UN CRPD committee in children and those living in remote Geneva, September 2019. and rural areas. The different aspects of their identities put them at risk of heightened disadvantage and intersectional forms of discrimination.
While one woman interviewed as part of Building Partnerships spoke of disability as a unifying force overriding other dimensions such as caste and class, very often not all experiences are equal – both within disability groups
19 Violence and access to justice
“I wish the police were aware of the vulnerability of disabled women.” Anju, 41, DPO member, Odisha
Violence is a serious area of concern “Four years ago, I had some uterus for all women with disabilities in both related issues and so I went to see India and the EU.34 Girls and boys a gynaecologist. It was extremely with disabilities are nearly three times uncomfortable to see that there was more likely to be subjected to sexual no female doctor when I went for violence, with girls at the greatest risk.35 ultrasound and sonography. I had a Surveys conducted in Europe, North hysterectomy. I wasn’t informed about America and Australia have shown the pre- and post-surgery repercussions that more than half of women with and was given medicines without my disabilities have experienced physical consent. I didn’t know about my right to abuse, compared to one third of women be informed about medical treatment without disabilities.36 Women with and felt miserable.” disabilities are also particularly at risk of forced sterilisation, medication and Domestic violence is an acute problem.41 institutionalisation, including forced National Family Health Survey (NFHS) abortion and contraception.37,38,39 A data indicates that over 30 per cent Human Rights Watch report on the of Indian women have been physically, situation in India detailed how women sexually or emotionally abused by their and girls with disabilities are placed in husbands at some point. There is also a institutions by their family members or recognition in the EU that women with police, in part because the government disabilities are at risk of violence from is failing to provide appropriate support their family members and carers, as well and services. Once there, they often as from strangers.42 experience lives of isolation, fear and abuse, with no hope of escape.40
Medical practitioners and wider Girls and boys with society continue to consider people with disabilities as either asexual or disabilities are hypersexual. This results in severe restrictions on their sexual behaviour, nearly three times as well as increased exposure to sexual abuse and mistreatment. Forced more likely to be hysterectomies are reported by some women with disabilities because subjected to sexual of discriminatory attitudes around pregnancy. Rubina, a 42-year-old DPO violence, with girls member from Rajasthan who contracted polio when she was three, spoke tearfully at the greatest risk of the devastating consequences of not being aware of her rights:
20 Rising voices Areas of discrimination
Several the women with disabilities “When I was experiencing domestic interviewed in India had experiences of violence, I needed more support from violence. Sneha, a DPO member from my family but there is no social security Rajasthan, was particularly affected. or other government support for women Now 36, she was badly burned in a with disabilities who are victims of household accident at 15 months old. violence. Above all, there is no sheltered Access to adequate health care in her accommodation for us.” local hospital was not available to her, but thanks to her uncle, who realised The lack of accessible shelters for women the seriousness of the situation, she was with disabilities is also a concern in the admitted to a district hospital. However, EU, where staff working in shelters lack despite receiving six months’ treatment disability awareness and knowledge of there, her hands were permanently hurt how to welcome women with disabilities.43 as a result of the accident and she lost Other women interviewed in India had all her fingers. Her husband physically also been physically abused by family and emotionally abused her. She shared members or at school. Rita, a 25-year- one horrific experience: old DPO member from Jharkhand who “I used to be very religious and believed uses crutches to walk, spoke of how this that I should be submissive and follow affected her mental health: my husband everywhere. I had always “My brother fights against my pursuit been a devoted wife. He used to hit of higher education and my sister-in- me, and I would never say anything, just law wants to get rid of me because I’m quietly bore it all. For seven years I went disabled. My parents want to give me a through all of this. One day, when my share in their property, but my brother husband came home drunk, he became and sister-in-law don’t want that. They angry because I’d been unable to prepare frequently verbally and physically abuse food on time as I was busy handling my me, pushing until I fall. So, I lose self- younger son. In anger, he killed my son by confidence and I’m unable to fight back.” throwing him twice on the wall, then on the floor and finally on the bed. My child Despite their increased risk, access to died but I continued to nurse him thinking effective and timely justice is a challenge he was injured, and he’d get better. But for women with disabilities in both he was declared dead when I took him Europe and India. In many countries to the nearest hospital. Even then, I did in Europe, even when women with not complain about my husband being a disabilities do manage to raise issues, murderer and defended him.” judicial buildings are barely accessible and justice personnel are not properly The pain of losing her child was trained to provide an appropriate unbearable for Sneha and she was service.44 In India, women with disabilities traumatised for years. She highlighted face a range of barriers at all stages how a lack of financial independence of the process, from reporting and and social welfare impacted her ability to interacting with the police to navigating leave this abusive relationship: the judicial process and obtaining
21 compensation.45 It was striking that judicial training to create an enabling, many of the women interviewed supportive environment for survivors were unaware of their legal rights with disabilities.49 Women and girls with and provisions to ensure justice. As a disabilities may require distinct types result, women with disabilities are often of procedural and age-appropriate unable to demand accountability. This is support, depending on their disabilities. made worse by the lack of statistics on This might include access to sign- crimes committed against women with language interpretation, the presence disabilities, so there is no understanding of someone to facilitate communication of the level of violence. (a ‘special educator’), the use of simple language and the option to file reports After the fatal gang rape of Jyoti Singh in braille. However, this support is Pandey in Delhi in December 2012, often not available, even though the India made important legal reforms on 2013 amendments and POCSO make it sexual violence in its 2013 Criminal mandatory. Most police do not have the Law (Amendment) Act.46 This added training or expert support required to to a number of other laws that have handle such cases. provisions for women and girls with disabilities, including the Protection of Kajal, a 30-year-old DPO member from Children from Sexual Offences Act 2012 Jharkhand, identified the need for training (POCSO) to protect children from sexual on the policies and schemes related abuse and the Protection of Women from to police procedures for women with Domestic Violence Act, 2005 (the DV disabilities – specifically on how women Act), which enables access to health care, with disabilities can file complaints, what legal aid, counselling and a shelter in happens when a woman has a speech cases of domestic violence.47,48 However, or hearing impairment, and what action the criminal justice system has largely can be taken if the police fail to respond. failed to implement the amendments, She also highlighted the need for more which include providing police and information on how the police support women with disabilities with dignity. ©Samarthyam Even when they manage to report incidents, women with disabilities are often treated badly by the police. Anju, a DPO member from Odisha, shared her experience of harassment and discrimination by local police:
The Samarthyam team promotes “For my sister’s marriage, my brother mass awareness on violence against bought a necklace for my sister-in-law women in the One Billion Rising and I asked for one too. I gave them Campaign, in February 2017. money for it and asked them to sell my share of rice for the extra amount. However, my brother shouted at me and my father and took the rice and money. My brother called me a thief
22 Rising voices Areas of discrimination ©Sightsavers/Atul Loke
Laboni Singha, 27, is a community health worker who helps identify people, particularly women, who need eye care in the Sundarbans, West Bengal.
and launched a police complaint. I the police. She spoke of how the abuse fought back but the police didn’t she experienced at the hands of her uncle bother to take me seriously as I was motivated her to fight. She took the step disabled. My brother kept troubling of complaining and reported her uncle me about the property and assets that to the local police. On their intervention, my father wanted to give to me. The a mutual compromise which went in police supported him and threatened her favour was agreed through the me. I wish the police were aware of local government. Empowered to move the vulnerability of disabled women forward, she resolved to continue to work and were able to implement disability- on women’s rights through her local DPO sensitive measures.” and to help other women with disabilities who experience domestic violence. However, Radha, a 25-year-old DPO member from Jharkhand, was able to share a positive experience of engaging
23 Family
“I am still fighting to remain single forever and not get harmed and abused in this male-dominated world.” Radha, 25, DPO member, Jharkhand
Families play a significant role in the “She used to fight me a lot and many lives of women with disabilities, but times she hit me. I never said anything at while families can be a place of refuge home. She never hit me at home because and support, they can also be a place she feared our father. Sometimes when of hardship. This puts women with my father found out about her hitting disabilities at particular risk as they are me, he would scold her. She would react often reliant on their families as their violently and want to give up her studies. primary carers because of a lack of social My parents were hurt by her attitude and security and government support for decided to support me to continue my independent living. Sometimes, women studies and aspire for a higher education. with disabilities report that family Currently I have a double MA and have members become resentful or even made my parents proud.” verbally and physically abusive as a result of financial and social strains. Often, it is family members and carers who are responsible for supporting the In both India and the EU, women with daily needs of people with disabilities.53 disabilities are more likely to be victims In the process of caregiving, they may of domestic abuse. Living in closed or have to forego their own opportunities segregated environments, women, in many to attend work of their choice, to earn cases, depend on the person perpetrating money, to progress in their career, to such violence for their survival.50 have a good social life and even to enjoy Additionally, women with disabilities in leisure time. In India, there are few of both contexts are at risk of being denied the benefits to caregivers provided in their right to motherhood, with forced some European countries, such as tax sterilisation continuing to be performed, exemptions and travel benefits and particularly on women and girls with social protection measures. There is no intellectual or psychosocial disabilities.51,52 separate funding agency or government department intended to help these Naina, a 29-year-old DPO member from informal caregivers.54 Rajasthan was an enthusiastic student who rarely missed school. Her parents Naina was eventually fitted with callipers were supportive and worked hard to give to help her walk, enabling her to carry her an education. her own bag to school. However, she struggled as her books got heavier in However, Naina was very dependent on higher classes. The route to school her sister who grew resentful at having included crossing a busy road which to look after her at school and carry both scared her, and her sister continued to her sister and her own bags. Additionally, get angry when she was asked for help. Naina’s sister didn’t like to sit next to Naina’s school Principal suggested she her in class. Naina felt awkward asking have two sets of books, one at school and for help, even from others, so she often one at home. It was a good solution, but it suffered in silence. At times, her sister proved a financial strain for Naina’s father. was physically abusive: She shared:
24 Rising voices Areas of discrimination
“My father earned 60 rupees a day once that child is born. Radha said and it was quite difficult for him to she felt vulnerable to such a fate: manage two sets of books for me. But he promised to do it in 15 to 20 days – “While working in an NGO [non- and he kept his promise. This solution governmental organisation], a friend worked and I was saved from the arranged a marriage proposal for me humiliation of carrying a heavy bag daily from a man with a disability who had a to school.” good job, but my parents refused [to let me marry him]. They wanted me to marry Property disputes, often instigated by an old man who had two girls and a wife siblings, were experienced by several who also lived with him. I came to know interviewees. Anju, a DPO member from close friends that this man wanted from Odisha, aged 41, shared how her a son and I’m pretty sure that once I brother’s attempts to gain control of the delivered a baby boy, he would kick family property drove the family apart: me out of the family. Also, what is the certainty that I would give birth to a boy? “My brother tortured me for the property. What would happen if this child turned I even went to the police station to out to be girl?” complain about him. After getting tired of his abuse, my parents and I broke ties Many of the women interviewed with him and started living elsewhere. I’m expressed an interest in marriage but taking care of my parents and ensuring felt it was out of reach. Often this was that they don’t feel neglected.” aggravated by negative attitudes within the family and a lack of willingness to Within the family, emphasis is placed on invest in a dowry. Some felt that their the institution of marriage, the family disability made them undesirable and as a social unit and the importance of that their prospects for marriage were religion.55 In many cases, women with slim. Richa, a DPO member from disabilities are not expected to adopt the Jharkhand who is 26 and has a physical roles of wife and mother. Women with impairment, spoke of how her dreams disabilities may face struggles as a result of falling inlove and finding a life partner of dependence on their parents, siblings were yet to be fulfilled: and extended families, and many, those with intellectual disabilities, are denied “I’m not allowed to think about my future their right to motherhood and family life. in terms of marriage prospects. Even in my daily work and networking with Some states run financial schemes that other women with disabilities, being offer individuals financial benefits for in a relationship with someone who marrying a person with a disability. Such could appreciate our existence – in schemes contravene the CRPD, are which one could be loved, cared for and discriminatory and serve to stigmatise enjoy life – is something that women women and men with disabilities further. with disabilities tend not to talk about. Interviewees also suggested it is common Ignoring our right to pursue happiness for families in rural areas to seek a in all terms is something that’s been daughter in-law with a disability in order cultivated in our societies for centuries to produce a child, only to abandon her and is sadly still continuing.”
25 Education
“The day I graduated and got a degree, I saw both love and happiness in the eyes of my brother and father. They gave up their moments of luxury so that I could be educated. My desire for quality education and my aspiration to ‘go on’ was supported by my family and no one else.” Meena, 23, DPO member, Odisha
Many children with disabilities have with disabilities fall behind, in particular never even enrolled in school, let alone 58. According to the National Survey had the opportunity once there to of Persons with Disabilities conducted work, play and learn. Globally, around July 2018 to December 2018, in rural 33 million children with disabilities are India, the overall literacy rate is 33.3 not in school56 and twice as many girls per cent for women with disabilities, as boys never start school.57 compared with 57.4 per cent for men with disabilities. Evidence from the World Bank shows that the enrolment rate for girls with The Right of Children to Free and disabilities is 71.9 per cent, compared Compulsory Education (RTE) Act, to 84.6 per cent for girls without 2009, provides for free and compulsory disabilities. Primary school completion education to children aged from six and literacy are the areas where girls to 14 years at elementary level in a ©Sightsavers/Animesh Dutta
Riya, who was screened at school and given a pair of glasses, smiles and sits with her classmates. Previously her eye problems had stopped her from attending school.
26 Rising voices Areas of discrimination
neighbourhood school. But while this Act second grade, I asked someone from mandates enrolment, it does not provide my village for help. He said, ‘You trouble the resources needed for the education of your family a lot! Why don’t you die?’ I a child with disabilities.59 was deeply hurt and left the school.”
There are several hurdles to girls with Following this incident, Kajal enrolled disabilities in India accessing and at an evening school where she was remaining in education, for instance, again tormented, this time by demeaning stigma is highly prevalent and many comments from the teachers and families will not support the education of students. Again, she decided to leave, a girl with disabilities. Additional hurdles both because of the negative treatment include the availability of accessible and because of her difficulty accessing transport and safe commuting options the school, which was far away, leaving to school. Factors within schools her no option but to crawl to get there. include issues such as an absence of Eventually, aged 11, she received a qualified teachers, lack of accessible tricycle and was admitted to another learning materials and a lack of inclusive school. Her education resumed briefly educational opportunities. Issues around but she soon faced another setback when adequate safety for girls with disabilities she had an accident and her tricycle was and basic infrastructural facilities, for damaged. She couldn’t attend school for example, accessible, private toilets, are five months. Fortunately, Kajal’s mother also major barriers to the education of ensured she received the surgery and girls with disabilities. In many parts of callipers she needed, and her classmates the world, children with disabilities are and teachers helped her too. effectively barred from school because schools are physically inaccessible.60
Kajal described how she faced numerous Globally, around challenges pursuing an education. She contracted polio at age three, resulting in 33 million children her being unable to move independently. Her mother washed, dressed and fed with disabilities her but with time she learned to move on her knees and later to walk with the are not in school help of a stick. However, just the thought of approaching school was terrifying for her as a young girl. She was always accompanied to and from school but one day a cruel comment from a fellow villager caused her to drop out:
“I used to crawl on my knees to the entrance of my school and ask people I knew to drop me home. Sometimes I used to wait for as long as an hour to find someone I knew. When I was in
27 However, although she was encouraged “In fourth year, my parents bought me to join a computer class to further her a tricycle from the block office, but skills, she had to again drop out because the school kids used to play or sit on the training centre was on the fourth it and I couldn’t use it, so I dumped it floor. Kajal’s request to move the class at home. Growing up, sometimes my to the ground floor was rejected by the friends would tease me by taking away trainer who said he could not do it for my crutches while I washed my hands just one student. Kajal said: and legs at the well. I complained and my teachers would do nothing. I decided to “I wanted to take the computer course dump the mobility aids as they’d become as vocational training. However, I was a cause of mockery and harassment. I extremely hurt and felt discriminated managed to walk to school but my against by the trainer’s statement, deformity increased until, one day, I ‘I cannot bring the classes down for started crawling on all four limbs.” just one student.’ All my dreams came to a standstill and for the first time I Asha, a DPO member from Rajasthan, realised that there should be stringent who is 27 and has a physical impairment policies and inclusive vocational following a surgical error, shared a training set-ups.” similar story:
Across the EU, girls with disabilities “The girls started to humiliate me… face many challenges accessing I used to feel very bad and I took off education.A 2018 report found that my callipers. The doctor had always European Schools, a network of thirteen emphasised that I should not stop intergovernmental schools primarily wearing callipers as they supported my teaching children of EU employees, legs and helped me walk better. But I failed to do enough to accommodate stopped wearing them and slowly my the needs of children with disabilities.61 situation got worse. Eventually, I lost my Parents described facing persistent ability to walk and I started crawling.” hostility from management and being repeatedly asked to attend meetings Negative attitudes to disability do not to hear complaints about their children. just exclude children from the chance of gaining an education, but also from Many women interviewed recounted the social activities that are so key to stories of harassment, cruel taunts and ensuring their inclusion, developing a insults, both by their peers and teaching sense of belonging and making friends. staff. These experiences left them feeling For Asha, not being able to take part fearful, hurt and inferior, with consequent in extracurricular activities was a negative effects on their mental health and painful memory: confidence. In several cases, taunts from other children caused women to stop using “I never participated in extracurricular their assistive devices, which resulted in activities such as dance and PE. I was their impairment getting worse without tempted to participate but I couldn’t the right support. As Seema, a 24-year- because I felt I wasn’t good enough and old DPO member from Odisha who that I might not be able to perform like contracted childhood polio, recounted: the others. So, I always compromised,
28 Rising voices Areas of discrimination
and teachers wouldn’t select me for The added costs of education for women any event or activity. I decided to sing with disabilities for appropriate transport, prayers during assembly time, however, assistance and devices meant that some I withdrew when I felt I was being stared worked extra hard to earn money to at and talked about afterwards.” fund their studies. Radha, aged 25 from Jharkhand, told how her motivation to Another key barrier to education for be educated spurred her on despite the girls with disabilities is the lack of water strain she experienced: and sanitation facilities. Not only were there no experiences of disability- “It was challenging to commute 12km to friendly toilets, sanitation facilities school every day and then work in the were inadequate and basic, if they field in afternoons to earn money for my were available at all. As a result, girls education. I was exhausted by the end sometimes opted for open defecation of the day. But the need to gain a higher or staying home, particularly when education and earn a decent living in menstruating. This was the case for Seeta, future was my only goal. My family was a 28-year-old DPO member from Odisha: not against my education, but there was no financial support from them, as they “The toilet in the school was usually couldn’t spare any money.” dirty and I had to crawl on the ground. My hands and dress got dirty, and finally I decided to opt for open defecation. During the rains I missed In rural India, the classes throughout my schooling days. During menstruation, I used overall literacy is to opt for open defecation and felt uncomfortable and embarrassed.” 33.3% for women Inadequate facilities also affected with disabilities Rubina, from Rajasthan: compared with “There was no light and water and we only had urinals without running water. 57.4% for men It used to stink a lot. During my periods, I couldn’t adjust my cloth pad with with disabilities one hand. I used to be scared that my uniform would stain. Once it did happen and I was ashamed that everyone would know that I had my period. So, I turned my skirt around and hid the stains by folding it in front of me. As there was no water in the toilets, I used to wipe my hand with leaves or mud but there was nothing to wipe my private parts.”
29 Health
“There are unlicensed doctors available in every village to which most of us go.” Sarita, 30, DPO member, Odisha
Despite substantial improvements in the There are strong links between past decade, access to health services in health, gender and disability. Women India remains weak, with services unable experience higher rates of disability to meet the needs of the population. Large than men and higher rates of depression health disparities between states, between and anxiety too, a fact that has been rural and urban populations, and across linked to gender discrimination as social classes persist62. More than 700 well as poverty, hunger, malnutrition, million people (70% of the population) live violence, overwork and disproportionate in rural areas where access to health and care burdens.63 Depression and rehabilitation services is particularly weak. anxiety are approximately twice as prevalent in women.64 Women and Poor infrastructure, inaccessible facilities girls with mental health conditions are and information, weak governance, poor particularly vulnerable to physical and quality health services, a lack of qualified sexual violence, but those who have health workers, unaffordable health care experienced violence are also more likely costs and inadequate access to medicines to develop a mental health condition in means that people, particularly those with the first place.65 Poor maternal health disabilities, struggle to access the care care is another major cause of disability they need. among women.
Meena experienced severe fever when Women with disabilities commonly she was three. After taking medicine from report needing healthcare services an unlicensed village health practitioner, but not receiving them66. They face a she fell unconscious for seven days. She range of barriers to accessing health was admitted to a city hospital where care, including lack of accessible health she was treated but, once out of trauma, information, inaccessible facilities or she was diagnosed with cerebral palsy. facilities too far from home, a lack of Almost half of the women interviewed privacy and confidentiality, negative developed their impairments as a result attitudes of health care workers, and a of poor-quality health care. Reasons lack of affordable medicines. for this included negligence by doctors and a lack of accessible hospitals. In Physical barriers to health care include some cases, vision loss was caused by uneven access to buildings, inaccessible malnutrition. Sneha, 36, a DPO member medical equipment, poor signage, narrow from Rajasthan, shared her experience: doorways, internal steps, inadequate bathroom facilities and inaccessible “The hospital was 15km away and there parking areas. Women, and women was no burns specialist there. They took with disabilities, are not prioritised in me in a camel cart as there was no other health care, even during emergencies, transport. Poor treatment meant I became with other patients being attended to deformed and lost my fingers completely. first. There is a lack of availability of Doctors would visit me, but they didn’t emergency care and gynaecologists for take my burn and swelling seriously.” women with disabilities.
30 Rising voices Areas of discrimination ©Sightsavers/Atul Loke
Nursing assistant Bandana checks a patient in the Sundarbans, West Bengal.
All of these factors contribute to a doctor. In primary health centres, doctors widespread reliance on unlicensed are usually not available, so villagers doctors in rural areas. Sarita, a 30-year- go to ‘quacks’ for medicine. Often their old DPO member from Odisha who medicines are ineffective and then we go developed low vision as a result of to district health centres. It’s not easy to childhood malnutrition, said: access facilities at district level and I’m always accompanied by my parents.” “There are unlicensed doctors available in every village, to which most of us go. When Kajal, who at age three acquired There is a primary health centre 4km polio, sought treatment after a tricycle away but usually we only go there if accident, she and her mother experienced we don’t get cured by the unlicensed inaccessible facilities as well as poor
31 treatment by health care staff. During “When I was in first year of graduation, I their visits to health institutions, there was abused by a ‘body massager’ who were times when Kajal was forced to was hired to massage my deformed wait in a queue despite having explained legs. He used to touch my upper body, her condition. It left her disappointed intentionally. For a few days, I asked and distressed. him to behave and only to massage my legs. However, he continued to be Affordability of health services is one abusive and then I mentioned it to my important reason why people with mother. She said, ‘If you want to get disabilities do not receive health care cured, adjust and accept.’ But I was not in many low-income countries. Rakhi, comfortable and prayed to God that it a 26-year-old DPO member from should stop immediately. However, I Rajasthan, was four months old when never had the courage to raise my she fell from the first floor of her house voice against his ‘bad touch’.” and was severely injured. There were no specialised medical facilities in the Many of the issues that women with nearest available health centre, so she disabilities face in India continue to failed to receive treatment. Rakhi’s uncle prevent women with disabilities in was supporting the family at that time Europe having the same standard of as her father was not earning, so it was health care as the average EU citizen. difficult for the family to support her This is despite the EU and its members treatment. Rakhi underwent several states having committed to providing operations in her teens but she and her the highest standard of health care to family felt humiliated by their poverty in people with disabilities in several ways, health centres and were treated badly including as an area of action in the by medical staff. Now 26, Rakhi has a European Disability Strategy.67 Many physical impairment. She shared how health care facilities remain inaccessible difficult it was for her and her family: to women with disabilities in Europe, including gynaecology facilities. There “There are no big hospitals in my village. I is also a lack of accessible, easy-to-read was injured when I was four months old information as well as adequate training and admitted to a big hospital at the age for health care professionals. of three where I got proper treatment. As I couldn’t walk, my father had to be In India, even in health care settings, with me all the time. Later, I was taken negative attitudes towards people with to Mumbai for treatment, but it was disabilities are pervasive, for example, very difficult as we were very poor.” women with disabilities reported health staff making derogatory comments Many of those interviewed spoke of their about them and their capacity to discomfort at the lack of female health care for their children. There is no care professionals available to attend accessible information for women with to their health issues, particularly those disabilities on childbirth to support them concerning women’s health. Asha said and interviewees recounted feeling this resulted in her being abused by a humiliated in health centres by rude and health care professional: abusive medical staff. Sneha said:
32 Rising voices Areas of discrimination
“During childbirth, women with disabilities are taunted when they scream during labour pains. The nurses In India, even in are very rude to these women. They usually say, ‘You didn’t think about it health care settings, when you had fun with your husband, then now why are you shouting.’ Even negative attitudes during my first pregnancy, my mother told me not to shout or cry during towards people delivery because she said that it’s a sign of weakness. I bit my inner lips with with disabilities my teeth so as not to shout. It was very painful for me. My lips were swollen for are pervasive days. Later, I realised how male power dominates our community. We are the one to give life to a male child but can’t In many countries, including India and express our pain! These attitudes in European Union countries, people with society are strongly oppressive towards disabilities are still treated without their 68 women with disabilities and people free and informed consent. need to be made aware about the value of us as humans first.” ©Sightsavers/Arko Datto
Since learning self-defence skills, Sudama has been able to return to her education.
33 Employment
“I want to explore the world, grow and become empowered.” Rubina, 42, DPO member, Rajasthan.
The economic independence of In India, there is a 4 per cent quota for women with disabilities is key to their people with disabilities in employment empowerment, yet they are systematically and a 5 per cent quota in higher excluded from the mainstream workforce education, but no specific provision for and often stigmatised, too. In the EU, the women with disabilities. Their inequality employment rate is expected to reach 75 is exacerbated in rural areas, where there per cent in 2020.69 However, only about are fewer economic opportunities for 47 per cent of people with disabilities are women compared to men. For Rubina, employed, compared with 72 per cent this prevented her engagement in the of people without disabilities. Moreover, workforce for some time: women with disabilities in the EU are more likely to be discriminated and “I was married when I was 16 years excluded from the labour market. old. I studied only up to class 10. I was not allowed to study further by In India, a similar situation exists. my in-laws. I got burdened with family According to the Survey of Persons chores. There were lots of issues in with Disabilities conducted by the society such as early marriage and National Statistical Office (NSO), India, patriarchal restrictions, and I wasn’t in December 2018, the Labour Force allowed to work outside [the home]. I Participation Rate among women with was discouraged and told, ‘We have disabilities is 8 per cent versus 36.8 per everything at home, so there’s no cent for men with disabilities in rural need to step outside.’ I couldn’t take India.70 Many of the interviewees spoke it anymore and revolted. Getting food of discrimination and exclusion. Kajal and shelter is not everything for me. I related how her family fought against her want to explore the world and grow and attempts at employment: become empowered.”
“In 2001, I applied for an Anganwadi job A person acquiring a disability can also and the government refused me it as affect the employment opportunities a result of political pressure from my for other members in a household. Very uncles. My uncles won and I did not get often someone in the household is the job. I re-applied and was supported required to take on caring responsibilities. by Jan Jagaran [an NGO] and got the job This was the case for some of the women as part of the disability quota.” interviewed and, as we have seen in issues relating to the family, it often Kajal still works at the Anganwadi, a rural caused resentment – which in some cases childcare centre which also provides basic escalated to abuse. Rakhi shared: health care. However, disappointed by the lack of employment opportunities for “My father often taunted me for taking people with disabilities, she now aspires me to the school as he could not go to to run a business. work outside.”
34 Rising voices Areas of discrimination
Accessibility is a cross-cutting issue Kajal felt she was denied a job due to her for all areas of women’s lives. It was marital status, highlighting some of the also cited as a barrier to employment stifling gender discrimination that still – from inaccessible training centres exists in India: to the physical strains of commuting and travelling for work and the lack “I was refused a job because of my of appropriate toilet facilities. Naina disability and being unmarried. I spoke currently works with an NGO for to a high officer, but she kept finding people with disabilities. She trains other excuses for not recruiting me. I’ve women with disabilities on provisions escalated the issue further and the in the Indian Disability Act but spoke matter is still pending. I’m shocked that of the challenges she faced, including being unmarried is a curse and those commuting for fieldwork, working odd who are married get a job, as if being hours and the lack of accessible toilet married is a blessing.” facilities. She said a lack of reasonable understanding of her specific needs and accommodation to them was a challenge: The Labour Force “Many women ridicule me, asking me why I am fussy during periods when they Participation Rate don’t have any problems. I face heavy bleeding and nausea and am unable among women with to travel for fieldwork. I’m taunted that they take heavy work during disabilities is 8% menstruation, while I excuse myself from work and need time off! They don’t versus 36.8% for realise that every woman has individual menstruation management needs and men with disabilities we need empathy and flexibility in our working days.” in rural India ©Sightsavers/USHA
Champa (second from right) formed a group with other women with disabilities, who learned tailoring skills.
35 Good practices This section outlines some of the empowering practices that were used in Building Partnerships. The real names of the women participants are used based on their consent and to acknowledge their accomplishments and successes.
Awareness raising “Today, I stand with my chin high and confidence in my heart, and I know, yes, I can.” Danjai, DPO member, Odisha
Detailed measures to combat stereotypes education with DPOs. The scorecard and to promote awareness of the rights process supported DPO members, children and capabilities of people with disabilities with disabilities and other stakeholders to through public awareness campaigns, the develop a scorecard assessing local school education system, media and training services and facilities. It also convened programmes are included in the CRPD in the school staff to undertake the same article 8, on awareness raising. process. Then it brought both sides together, along with other stakeholders The need for awareness raising extends and decision-makers, such as local to women with disabilities themselves government representatives, to develop a who, as a result of discrimination and common assessment and action plan for exclusion, often lack the skills, resources, improving services. opportunities, confidence, access to information and knowledge to become As a rights-based methodology, the process effective advocates of their own rights. started with an orientation session on To support this, Sightsavers India ran a rights and entitlements. This was situated gender assessment, and an SDG disability within the 2030 Agenda, the CRPD, inclusive scorecard process focused on the RPWD Act and the CEDAW, and it included a specific focus on the rights and ©Sightsavers entitlements of women with disabilities. The gender component built on a participatory gender assessment already undertaken with the DPOs.
The strength of feeling and sense of empowerment that the interviewees recounted as a result of their participation in these processes was notable throughout A two-day workshop on empowering the interviews. Many women spoke of women DPO Leaders on Advocacy and their personal transformation, increased Gender Equality under the EU project confidence and new-found assertiveness. was held in Bhopal, Madhya Pradesh, on In the words of Danjai, “My dreams have 26-27 July 2018. wings now.” She continued:
36 Rising voices “When I was nominated group leader of Interviewees spoke of how their confidence the parents and DPO group to develop spurred them on to support others too. In the ratings for the SDG disability inclusive Rekha’s words: scorecard recently in Behrampur, I ‘found myself’... This was my first community “Before, we would discuss our rights only exposure and I learned how to lead active among ourselves. Now, we exert them.” advocacy and stand up for the rights of ©Sightsavers girls and women with disabilities. For me, now, there is no looking back. It’s one of the things I will never want to give up, no matter what people say to me.”
Similarly, Leela, DPO member from Jharkhand, recounted with joy her experience of speaking publicly for the first time as part of the SDG scorecard process:
“I was nervous while holding the mic, Rekha Meghwal says that after the gender but when I looked around, I got my training, she has become tech savvy. confidence back and could recall all my opening speech lines. I spoke with a mic Salma, DPO member from Rajasthan, felt for the first time in my life as part of the empowered to stand up for a man being scorecard process and now I’m confident abused on public transport. She said: that I can address community meetings better and actively advocate for other “While travelling on the bus, the conductor women with disabilities.” behaved badly towards a man with a
©Sightsavers disability and slapped him. The man had a bus pass, yet the conductor wouldn’t let him stay on the bus. I couldn’t let that happen, so I walked up to the conductor and challenged him by telling him that he was wrong, and he should stop humiliating the passenger. The conductor realised that the passenger wasn’t alone and let the man remain seated.” ©Sightsavers
Leela Kumari recommends the monitoring of schools to ensure children, particularly Salma Bano says there is no caste, girls, with disabilities are admitted and can class and religion divide for her. People learn effectively. recognise her as a disability rights activist.
37 ©Sightsavers
Implementation of the Disability Inclusive Score Card on SDGs took place in five states. The first pilot focused on inclusive education. Women with disabilities played a leading role in the process.
The value of building the confidence of discussion with children with disabilities women with disabilities should not be to understand their challenges and needs. understated. The gender assessment study The findings were used to advocate for of DPOs found that women were reluctant accessibility improvements to support to come to DPO training sessions and inclusive education and will benefit many other meetings as they could not always children in her village. understand the content and felt they could not actively participate because of Anuradha, a DPO member from Rajasthan, their lower levels of education and low focused her efforts on improving self-esteem. This is one small insight into environmental accessibility and health care: a fundamental way in which women with disabilities are made invisible. “An accessible environment is very important under the SDGs. I am As well as transformation on a personal and actively advocating for it and it’s interpersonal level, the advocacy skills the been implemented in a few of our women gained as a result of the training is neighbourhood streets. I’ve also resulting in positive and tangible outcomes succeeded in getting the sewer lines on a wide range of issues. Nageshwari, a maintained. These had been neglected, DPO member from Jharkhand, was an with dirty water entering our houses. active contributor to the SDG scorecard Implementation of an accessible process in Jharkhand and was selected to environment helps not only people with assess the accessibility of public buildings. disabilities but everyone. I want good As part of this, she facilitated a group roads, light and cleanliness in my village.
38 Rising voices I’m also fighting for accessible public Shweta, a DPO member from Rajasthan, toilets for women with disabilities and spoke of how she’d previously been hesitant advocating for a school toilet facing the and embarrassed to talk about issues such market within the school premises.” as menstruation but feels liberated since undertaking gender training. Anuradha has also been advocating for more hospitals and more qualified female ©Sightsavers doctors. Interviewees particularly valued learning about their sexual health and reproductive rights. A DPO member interviewed shared her sadness that there was no information given to young girls regarding menstruation and hygiene management, resulting in distress and unhygienic practices. She recalled:
“I got my first period when I was 14. I told my mother that I saw blood in my urine and asked her what was happening to me. I was scared! When my mother told me that I would have to live with this throughout my life and every month I’d face this, I was shocked. At 16, before I Shweta Garu runs a boutique at home could even understand more about my and also gives training to other women body and the biological changes I was on disability rights. experiencing with puberty, I got married.” ©Sightsavers “At 16, before I could even understand more about my body and the biological changes I was experiencing with puberty, Anuradha Pareek, a disability campaigner, was elected to local government as I got married.” Panchyat Samiti director.
39 Participation and representation “They see me as a future political leader.” Salma, DPO member, Rajasthan
Ensure responsive, inclusive, participatory colleagues appreciate her participation and representative decision-making at all and pay attention to her views. She levels. SDG Target 16.7 manages the provision of tricycles, provides guidance on loans and raises awareness Women with disabilities in both India and of rights to other women with disabilities. the EU face many environmental, attitudinal She also assists the development of her and political barriers to participation. DPO’s gender committee and undertakes Consequently, they remain largely excluded accessibility audits of public spaces, such as from decision-making processes on issues schools and rural childcare centres. Salma that affect their lives. Often, women with spoke of how her DPO involvement and disabilities are invisible during consultations advocacy work has inspired her to get and decision-making, and are under- involved in politics: represented in organisations that represent disability or women’s issues. Organisations “People have started recognising my of women with disabilities both in the work and my position. My neighbours EU and India are very few,71 with limited have started seeing me as someone very funding and resources. They often lack influential due to my DPO position and visibility in both the agendas of the connection with high-profile people in disability and the women’s movement. the government and gram panchayat. They see me as a future political leader Many of the women interviewed for and if I’m given an opportunity I’d like Building Partnerships found engagement to be in politics. My neighbours have in their DPO an invaluable platform for encouraged me to become a ward member advocacy. Leela, an active Secretary in of their area and say they will vote for her local DPO in Jharkhand, shared how me. Other religious communities have she takes decisions and how her male started recognising me as well, such as the ©Sightsavers/Askhok Yadav
Orientation of elected Panchayati Raj (local administration) representatives on SDGs in Sirohi district, Rajasthan.
40 Rising voices Jain community. There is no caste, class carry out advocacy and help find solutions and religion divide for me. People have to issues facing people with disabilities. started recognising me as a woman with She has gained status and respect in her disabilities rights activist. And this is me, community. She said: new Salma, without any prejudice. I live for myself and my family, and want my sisters, “I am known in my village for my work women with disabilities, also to live like me and contribution. My father is known for – chin up and smiling. We have coined a my work and people say, ‘Look, there’s new word too: sisterhood. United we stand Anuradha’s father.’ I feel proud and together to uphold our rights.” confident that now I have an identity.”
In India, there are very few women with However, Anuradha still faces many disabilities in local government, despite a challenges in her work. She represents 50 per cent allocation of seats for women. women with disabilities from her area in the The views of women with disabilities are Social Welfare Department but has found often ignored or disregarded in favour of that even that department discriminates experts, professionals, parents, guardians against women with disabilities. She has and carers. Enabling environments and also faced issues within her own DPO, positive attitudes to women with disabilities where she says she has frequently faced are essential to promote their political aggravation from male DPO members if participation. This, in turn, will result in someone from her village is nominated for public policy that is more disability inclusive. a post in the DPO. She added:
In Europe, women with disabilities are also “When there is visibility of women with under-represented in public and political disabilities required during events and life. In November 2018, the European seminars, I am invited. However, in an Parliament passed a motion about the urgent decision-taking meeting where my situation of women with disabilities. It representation is necessary, I’m not called.” asked for the introduction of “policies to ©Puran Sharma, APNO, Rajasthan enable and encourage the participation of women and girls with disabilities in public, social, cultural, economic and political life, in particular by reducing barriers to mobility and encouraging women with disabilities to form and join organisations and networks, as well as through training and mentorship programmes”.72 Representation was highlighted as an important factor for engaging more women to become empowered. In Leela’s words:
“If more women join the DPO, it will be a motivating factor for other women. They Women DPO members are trained will feel empowered like me.” on making jewellery, which builds a sense of solidarity, independence and Anuradha, a DPO member from Rajasthan empowerment. and a member of her local government, is admired for her power and position to
41 Economic empowerment “I have decided to be a member of a local self-help group and earn a decent living for myself and save for my family. It will help me to stand up with economic empowerment.” Dhanjai, DPO member, Odisha
By 2030, achieve full and productive A key part of the journey to economic employment and decent work for all empowerment is access to training to gain women and men, including for young the skills needed to earn a living. When people and persons with disabilities, and Neha started a stitching and beautician equal pay for work of equal value. SDG course, she was excited, but demotivated Target 8.5 by her neighbours:
Economic empowerment is key to a “When I told my sister that I need 1,500 person’s independence and can further rupees to undertake a beautician course, contribute to self-esteem and self- one of my neighbours taunted me, saying, fulfilment. Access to decent work, social ‘You can’t even walk properly, what is the protection and financial inclusion all play a point of doing such a course?’” crucial role. This was confirmed by Building Partnerships. In particular, the project Fortunately, a local NGO, the Jharkhand highlighted the role of social protection State Livelihood Promotion Society (JSLPS), and work in supporting interviewees’ self- supported her to do the course for free. sufficiency and, in turn, building their She now uses her skills to support her confidence, developing their wellbeing family. On completion of the course, the and fostering their independence. same neighbour began to respect her for
©Sightsavers the quality of the services she provides and now visits her regularly for beauty treatments. In Neha’s words:
“People’s attitudes have changed, and they look up to me. I have become quite popular… Daily earnings got me respect and this is what I treasure the most!”
Gaining respect and status in the community came up again and again as a result of the women defying expectations to become educated, employed, running their own businesses and running for government. These attitudes created positive reinforcement which developed the women’s confidence to reach even higher and achieve more.
DPOs also play an important role in facilitating the access to employment and livelihood opportunities by making Neha Khatun is self employed and connections, providing training and setting independent. She runs her own up self-help groups. Through self-help beautician business. groups, many of the women involved in
42 Rising voices Building Partnerships were able to support In terms of social protection, India’s each other to earn reasonable incomes, for disability pension scheme was highlighted example, by making spices or providing as a valuable provision. The government tailoring services. This was a striking source provides a small monthly pension for of empowerment and pride. Salma, a DPO minimum sustenance to people with member in Rajasthan, who works in a self- disabilities who are over the age of 18 and help group earning a reasonable monthly living below the poverty line. While the income, was involved in raising funds to run amount is very small, Leela, a DPO member the first self-help group for women with from Jharkhand, was able to save her disabilities in her district. She said: disability pension and, with further support from her mother, set up a grocery shop. “This has never happened before… She now supports her family, including we have created history.” her brother who also has a disability. Leela volunteers in a government affordable Shweta, another DPO member in Rajasthan, housing initiative, where she verifies the handles her DPO’s accounts and runs a documents of those who have applied for small boutique at home. She now works the scheme. People in the community who to empower other women with disabilities previously ignored her now approach her as a self-help group trainer, teaching other with respect. women with disabilities to stitch. She said: Leela’s experience illustrates the importance “With SDG training, my strength and of countering negative stereotypes of faith in my own self has increased. I train women with disabilities as incapable of women to become financially empowered work and reinforces the importance of and earn a decent income by becoming initiatives to promote awareness of the part of self-help groups. Now the women capabilities and contributions of people have started earning slowly and are with disabilities, as outlined in the CRPD’s confident as they are recognised as article 8 on awareness raising. productive citizens of society. I helped create opportunities for these women for Many countries use quotas to counter their financial empowerment and self- the exclusion of women with disabilities respect.” from the workforce. Some of the women interviewed had benefited from disability It is efforts like these which will help quotas for gaining access to college women like Jayanti, who would like to run a and employment. While international shop in future with the aspiration “to be a frameworks don’t explicitly reference taxpayer and feel proud of it”. quotas, the CRPD does call for promoting Through her DPO, Jhumuri, aged 24 and the employment of people with disabilities from Odisha, received training on how to in the private sector “through appropriate make soft toys, fast-food preparation and policies and measures, which may include farming. She started to work from home affirmative action programmes, incentives with her sister-in-law. She said: and other measures”. In its review of the EU report, the CRPD Committee “I sell soft toys in the village fair. I’ve also recommended that the EU develop managed to save 6,000 rupees so far affirmative actions to advance the rights and have bought a mobile phone on my of women and girls with disabilities. own. I feel happy and contented with the business as I’m self-sufficient.”
43 Solidarity, alliance building and learning exchange “Meetings with international NGOs were an eye-opening and inspiring experience.” Neeta, DPO member, Madhya Pradesh
This Partnership (Agenda 2030) will work national efforts. Among other things, it in a spirit of global solidarity, solidarity stipulates the need for capacity-building with the poorest and with people in initiatives, such as the exchange and vulnerable situations.73 sharing of information and experiences and the development of training and best The benefits of creating alliances to foster practices in partnership with civil society an enabling environment for people organisations, particularly organisations of with disabilities to effectively and fully people with disabilities. The value of this participate in social life is recognised in is reflected by the enthusiasm of Neha, a the CRPD in article 29, which includes DPO member from Jharkhand: stipulations around the importance of forming and joining organisations of “I feel knowledgeable and empowered, people with disabilities to represent people thanks to the information I’ve been with disabilities at international, national, given to connect local and global issues regional and local levels. relating to women with disabilities. I’m already engaged in rights-based advocacy The importance of solidarity and alliance and want to be an advocate of disability building was recognised by most rights. During the disability inclusive SDG interviewees. As they spoke of becoming scorecard process, I learned that ‘united empowered through learning their rights, we stand together’ and alone we cannot undertaking advocacy and becoming uphold all our rights!” economically empowered, the interviewees increasingly spoke of reaching out to To extend this transformational impact support other women with disabilities from the local to the global, Building and of their desire to share what they had Partnerships supported initiatives learned and build solidarity. Salma, a DPO to facilitate rich and significant member from Rajasthan, spoke of her exchanges between grassroots rural efforts to build an alliance of people with DPO representatives from India and disabilities at the local level: EDF partners. In December 2018, a group of Indian DPO members were “In our DPO, we have started recognising welcomed in Brussels.74 The delegation and identifying women and men with was invited to share their learnings from disabilities in the community. We connect Building Partnerships with the EU, EDF, with them to understand their current Sightsavers, the EU Bridging the Gap situations and motivate them to join project and the International Disability our DPO. We’ve started one-to-one and Development Consortium (IDDC). conversations with everyone. This is not Nadia Haddad, Board member of the a job for me anymore. I’m living with European Network on Independent Living disability and for people with disabilities.” (ENIL) and of EDF, shared:
The importance of linking local advocacy “It was very interesting to hear about with higher levels is recognised by the the Indian laws and policies protecting CRPD in article 32, which recognises women with disabilities and the work the importance of measures to foster of Sightsavers in advancing capacity- international cooperation in support of building of DPO members, in particular
44 Rising voices ©EDF
Indian DPO representatives participate in European Disability and Development Week in partnership with EDF in Brussels, Belgium, in December 2018. women members, through projects and member of the CEDAW Committee. It was programmes such as self-defence courses, hugely empowering for the Indian DPO employment schemes and workshops on members to engage with and share their sexual and reproductive health and rights.” learning with EU organisations. Neeta a DPO member from Madhya Pradesh who In June 2019, a second delegation took part in the exchange, reflected: of six DPO members attended EDF’s Annual General Assembly where they “I had the most remarkable visit to had the opportunity to present the work Brussels with fellow DPO members. It undertaken so far under the SDG scorecard was the first time that I travelled to an project.75 The Indian team presented international workshop where I had Sightsavers’ experiences of advancing the the opportunity to express my own rights of women with disabilities in India experiences and share my successes and in a seminar on CEDAW, chaired by Ana listen to international speakers.” Peláez Narváez, EDF Vice President and
45 ©EDF In November 2019, a delegation of EDF members was supported to visit India to meet DPO representatives working at grassroots level in Rajasthan.76 The visit was a successful exchange of mutual learning between EDF and the state-level DPO, All People’s Network Organisation (APNO). It also included a meeting with the Municipal Department of Dungarpur, in which EDF stressed the importance of including DPOs and women with disabilities in all processes EDF delegates meet with APNO, a and consulting with them as experts, not state-level DPO network supported by simply as beneficiaries. Sightsavers, in Udaipur, Rajasthan. The success of these exchange visits During the exchange visits to Brussels, proved a powerful intervention, both for the delegation from India also had the EDF to share its expertise to build the opportunity for extensive learning about capacity of grassroots Indian DPOs and for the situation of women with disabilities in Indian DPOs to share evidence from the Europe. They took part in a wide range of Indian disability context to influence EU disability-related events and met with many development cooperation and institutions.
other European and international disability ©EDF organisations and EU institutions to learn and share. Neeta further shared how much she had benefited from the exchange:
“I came back with lots of learnings and I feel very confident. I would appeal to every DPO of India to work together in a united way and motivate each other to achieve what EDF has achieved in Europe. I saw that in EDF women with disabilities have a strong voice and participate more and that should be replicated in Indian DPOs.”
APNO and EDF representatives at a state-level DPO meeting in Udaipur, Rajasthan, in 2019.
46 Rising voices Way forward While many of the gaps that have emerged in Building Partnerships are addressed by the rights and entitlements found throughout the 2030 Agenda, the CRPD, the CEDAW and the RPWD Act, the reality is that there is still a substantial way to go before the rights of women with disabilities are fully realised. While their rights and entitlements exist in theory throughout high-level international policy frameworks and human rights treaties, significant challenges remain to ensure they are known, upheld and monitored. Practical steps and initiatives are needed to mainstream gender and disability into policies, programmes, budgets and action plans. Strengthening the two key areas below could be a game changer for millions of women with disabilities in India and the EU.
Policy and programming
In 2019, the CRPD Committee The Spotlight Initiative on women’s recommended that India adopts national rights, launched by the EU and the and state action plans for promoting equality UN in December 2018, with an initial and the inclusion of women and girls with investment of 500 million euros.77 Despite disabilities in all areas of life; ensures that its intentions to prioritise the gender the national policy for women mainstreams dimension within development cooperation, disability; and ensures the effectiveness it does not systematically include women of campaigns to raise awareness, reduce with disabilities.
stigma, gender and disability stereotypes, Photo contribution: Rising Flame involving women with disabilities through their representative organisations in awareness-raising programmes following the Committee’s general comment No. 7 (2018). It also recommended that India establish gender-responsive policies and budget allocations at the national and state levels to address the rights of all women and girls Nidhi Goyal, founder and executive with disabilities to better inform policy and director of Rising Flame, on a women provision of services. with disabilities India network panel at the National DPO consultation on CRPD In 2015, the CRPD Committee concluding remarks in March 2020. recommended that the EU mainstream a women and girls with disabilities The Gender Action Plan (GAP) aimed perspective in its forthcoming gender to strengthen the EU’s commitment on equality strategy and its policies and gender equality but failed to mention programmes, as well as a gender disability. This was despite the European perspective in its disability strategies. Disability Strategy 2010-20, which aimed While some initiatives have been to implement the CRPD and stipulated the undertaken, the EU has not recognised need to pay attention to the cumulative women with disabilities in much of its impact of discrimination that people policymaking and programming. Some with disabilities may experience on other examples include: grounds, including gender.
47 Jutta Urpilainen, the new European Data and research Commissioner for International Partnerships, has announced the preparation of GAP III, Another major gap in addressing the needs saying that it represents a major opportunity of women with disabilities is the lack of to mainstream the rights of women and girls research and data. These are currently with disabilities. difficult to compare because of the different definitions adopted across countries – Gender Equality and Women’s sometimes even within the same country by Empowerment: Transforming the Lives different public administrations. of Girls and Women through EU External Relations 2016-2020, also known as GAP The 2030 Agenda clearly requires that II and established as a continuation of GAP. SDG indicators should be disaggregated, GAP II mentions disability as a factor leading where relevant, by income, sex, age, to multiple discrimination and intersectional race, ethnicity, migratory status, disability barriers, as well as the need for women and and geographic location, or other girls with disabilities to take control over characteristics. However, in the EU there decisions that affect them at all levels; but it is a gap in the collection of gender- does not systematically address the rights of specific data and disability – this, despite women and girls with disabilities. the CRPD Committee recommendation that the EU identify and put in place GAP II suggests excellent tools for gender mechanisms to disaggregate data on mainstreaming and concrete examples disability in order to monitor the rights of of successful experiences. However, people with disabilities in its development there are few examples that include a programmes. In June 2012, the Council disability perspective or that address the of Europe also recommended that EU intersectionality between gender and member states develop consistent disability. There is no mention of women or statistics and data for people with girls with disabilities in the proposed actions disabilities, women and girls. or indicators which include priorities and objectives. In 2018, the EU made an important commitment to using the OECD EU Gender Equality Strategy post-2019. (Organisation for Economic Co-operation During the past decade, the EC adopted and Development) DAC (Development a strategy for equality between women Assistance Committee) disability inclusion and men, 2010-2015 and a strategic marker in its international cooperation work. engagement for gender equality, 2016- This marker could be critical to improving 78,79 2019. Neither addressed the specific the availability and quality of data collected situation of women and girls with disabilities. on disability in relation to Overseas The ‘rights-based approach encompassing Development Assistance (ODA). The marker all human rights for EU development will effectively start to measure how much cooperation’ is a toolkit which aims to help programming aid reaches people with operationalise the EU’s commitment to disabilities, and advance our knowledge on implementing a rights-based approach to how inclusive EU spending is and the impact development cooperation.80 It only briefly it has on women with disabilities. mentions people with disabilities as part In India, disaggregated data on disability is of the vulnerability criteria and fails to scarce. The 2011 census and the National provide concrete examples, good practice Sample Survey Organisation (NSSO) or practical guidance on how to ensure the Disability Survey 2018 remain the most participation and inclusion of people, and significant contributors of disaggregated more specifically women, with disabilities.
48 Rising voices 0 6
0 5
0 4
0 3
0 2
0 1
0 0 2012 2013 2014 2015 2016 2017
Globally, ODA with a disability-relevant component has formed less than 0.6% of all aid since 2012. Source: Development Initiatives based on OECD DAC Creditor Reporting System. data. However, the publishing of this data released by the Ministry of Statistics and is very infrequent, and the census happens Programme Implementation, only three once in 10 years. indicators specifically mention disability, out of a list of more than 300. This is The NSO, a wing of the Ministry of substantially lower than the indicators Statistics and Programme Implementation, mapped by the 2030 Agenda, which has has conducted a Survey of Persons with specific mention of disability in seven Disabilities during July 2018 to December targets and 11 indicators. 2018 as a part of the 76th round of the National Sample Survey (NSS). Prior to this, No specific indicators for people with the survey on the same subject was carried disabilities or, more specifically, women out by the NSO during the 58th round with disabilities are included in any of the (July to December 2002). However, the goals and targets which have a reference survey did not use the Washington Group to vulnerable groups. Furthermore, of Questions to ensure internationally- current indicators are not developed in comparable data.81 harmony with the CRPD and the RPWD Act. However, the National Committee for Disability does not figure in India’s routine the Rights of Persons with Disabilities has macro-data collection. The macro-level proposed some key indicators to capture data available on disability in the public the inclusion of women with disabilities. domain is outdated and offers only a limited understanding of the prevalence of the problem of disability and its gender implications. From the list of indicators
49 Recommendations
Below, the paper makes recommendations for action by the EU and India, and at a global level. The recommendations from India are the voices of the women with disabilities interviewed for this paper. The recommendations on the European Union were drafted by EDF.
Madhumita Das, a community health worker, visits homes to talk to people about eye care. ©Sightsavers/Atul Loke
50 Rising voices India The following recommendations were made by the 15 women DPO members interviewed as part of Building Partnerships. They are specific to SDG implementation in the Indian context and recognise the key concerns of the interviewees, as vividly illustrated in their stories.
Access to justice Family • Raise awareness of the right to justice. • Amend state policies that discriminate Raise awareness of police complaints against women with disabilities. Develop mechanisms and reporting processes. policies in line with CRPD. Remove, with Sensitise and implement training among immediate effect, those discriminatory the police on disability inclusion and laws that offer financial benefits for the rights of women with disabilities marrying people with disabilities. to access justice, including the specific issues faced by women who are blind • Provide an allowance for women with and have speech or hearing impairments. disabilities to support setting up a home.
• Promote accessibility of all judiciary • Provide support to families. Ensure that buildings, including courts and police all disability programmes work with stations. Ensure women’s desks at police families to raise awareness, improving stations have female police available their understanding of disability and how and that they are trained to uphold The they can support and empower people Criminal Law (Amendment) Act, 2013. with disabilities. ©Samarthyam
Samarthyam, under its project Women with Disabilities Forum for Action, raised awareness on violence against women with UN Women at India Gate, New Delhi, in December 2015.
51 Education Health • Ensure accessibility of buildings, • Ensure access to health care. Ensure transportation and sanitation facilities that quality health care service for students and teachers with provision in rural India meets the needs disabilities, in terms of the physical of women with disabilities. Support infrastructure of buildings, including mobile community outreach services to regular maintenance of schools, training dispense medicines. Ensure access to centres, hostel facilities and staff rehabilitation services. accommodation, as well as adequate and accessible water and sanitation facilities • Enable community health workers to for managing menstrual hygiene needs. provide medicines at home, under the health service provision scheme of the • Provide assistive devices and National Rural Health Mission. technologies and provide reasonable accommodation, including comfortable • Make sure health care is available chairs and seating arrangements, scribes through people’s lives. Provide for blind children and children who cannot preventive care, for example, through the access learning without assistance, and provision of free medical check-ups twice games for children with disabilities. a year for women with disabilities and early intervention for girls with low vision. • Ensure children with disabilities are Support rehabilitation services. Prioritise in school and are learning effectively. women with disabilities and provide a Ensure schools act to retain girls with health care to support priority check-ups. disabilities in school and promote learning. Ensure local authority • Ensure the availability of qualified intervention to support out-of-school female doctors and gynaecologists children. Record when girls with for women and girls with disabilities disabilities drop out and why. in primary health centres, community health centres and other government • Raise awareness of the rights of hospitals. Promote privacy during girls and women with disabilities in consultations and provide accessible the curriculum, including on sexual health information. health and reproductive rights, safety and gender equality. Train teachers • Raise awareness and train medical on the rights of girls and women with staff and women with disabilities on disabilities, with a specific focus on girls. the health care rights of girls and women with disabilities, including the • Provide gender-sensitive skills training rights of women with disabilities to and scholarships for women with their sexual health and reproductive disabilities in higher education. rights. Stop treatment without free and informed consent. This includes abortion, contraception and sterilisation.
52 Rising voices Economic empowerment and Accessibility employment • Make voting facilities accessible • Provide reasonable accommodation during elections. to women with disabilities at their workplace, for example, through the • Ensure public transport is accessible provision of personal mobility devices, and affordable. Recruit women drivers adapted vehicles, availability of accessible and conductors to combat violence and transportation, transport allowances, abuse towards passengers. female assistants and mobile crèches for • Promote independent living through working mothers with disabilities. access to rehabilitation services with • Implement fair, accessible and equitable subsidised and regularly maintained recruitment processes, for example, (where appropriate) assistive devices, by prioritising qualified women with and personal support for girls and disabilities, raising awareness of the 4 women with disabilities. Ensure assistive per cent quota in government jobs for devices and technologies are gender people with disabilities, and holding job and age appropriate. fairs to connect women with disabilities • Protect women with disabilities. Use with companies and service providers. gram panchayat (village council) funds End the criteria of marital status as a to ensure the safety and security of requirement for employment. women with disabilities by, for example, • Provide social protection for women providing free volunteer escorts for with disabilities, including adequate travel to school and college or support quality-of-life protection and the with banking services, excursions and provision of accessible shelters, health centre visits. including, where necessary, domestic ©Sightsavers violence shelters for women with disabilities at block and district level.
• Promote and support financial inclusion. Make low-interest and flexible loans available to women with disabilities, including for self-employment, higher education and travel. Recognise self-help groups run by people with disabilities. Provide vocational training to women with disabilities.
Youngest voter and DPO member from Bojunda in Chittorgarh District, Rajasthan.
53 ©Sightsavers
Anuradha presenting at the UNESCAP-led Asia-Pacific Forum on Sustainable Development on the challenges faced by women with disabilities in India.
Awareness, participation and representation • Include women with disabilities equally • Raise awareness of the 2030 Agenda. in all social, political, cultural and Train all DPO members on SDG economic areas of life. Build an inclusive targets and indicators, and monitor culture at grassroots level, including the SDG implementation through a gram panchayat, starting with raising scorecard process. awareness of the rights of women with disabilities among the women • Create avenues for increased themselves. Make local government and participation, for example, through gram panchayat policies available to all creating gender committees within women without discrimination. DPOs to address rights-based advocacy and prevent abuse and violence against • Build a supportive ecosystem. Encourage women with disabilities. advocacy and support groups for women with disabilities. Create wider platforms and opportunities to connect women with disabilities so they can share knowledge and information on rights.
54 Rising voices Data, research and monitoring • Collect data on women with disabilities • Conduct social audits. Collect data on who have applied and/or received women with disabilities at the village certificates, pension and appropriate level to monitor their educational, assistive devices and technologies. medical, social, economic, political and Include reasons for delays or denials. cultural inclusion.
• Conduct access audits of public places. Implement recommendations.
• Monitor access to gram panchayat services in rural areas. Compare quality of service provision for people with disabilities to that for people without disabilities.
PRIMARY SCHOOL
Not S/No. Indicators Very bad Bad OK Good Very good answered Total Children 3 4 0 3 0 0 10 Accessible 1 Parents 11 1 0 2 0 0 30 environment 14 Service providers 0 6 0 0 0 0 6 14 11 0 5 0 0 30 Training of Children 0 0 0 0 0 10 10 teachers on Parents 7 6 0 0 0 1 14 2 children with disabilities Service providers 6 0 0 0 0 0 6 30 13 6 0 0 0 11 30 Children 5 4 0 1 0 0 10 Availability of 3 Parents 13 1 0 0 0 0 assistive devices 14 Service providers 6 0 0 0 0 0 6 30 24 5 0 1 0 0 30 Children 2 8 0 0 0 0 10 TLM for all types 4 Parents 9 5 0 0 0 0 of disability 14 Service providers 6 0 0 0 0 0 6 30 17 13 0 0 0 0 30 Children 10 0 0 0 0 0 10 5 Accessible toilet Parents 13 1 0 0 0 0 14 Service providers 2 4 0 0 0 0 6 30 25 5 0 0 0 0 30 Participations of Children 6 3 0 1 0 0 10 children with Parents 9 5 0 0 0 0 14 6 disability in sports and cultural activities Service providers 0 0 0 1 5 0 6 30 15 8 0 2 5 0 30 Children 26 19 0 5 0 10 60 Total Parents 62 19 0 2 0 1 84 180 Service providers 20 10 0 1 5 0 36 Grand total 108 48 0 8 5 11 322 Consolidated scorecard on Inclusive Education as part of the DPO-led process on the Disability Inclusion Score Card.
55 European Union The following recommendations call for a greater, more nuanced understanding of the complex, and often cumulative, nature of the discrimination girls and women with disabilities face. This is explicit in the call for funding for further research, which acknowledges the important role the EU can continue to play in respect of this area.
Legislation and programming • Mainstream the rights of women and • Formally include women and girls with girls with disabilities in international disabilities in the Spotlight Initiative, the cooperation, including in the next global, multi-year partnership between Gender Action Plan III and the new the EU and the UN to eliminate all forms EU Action Plan on Human Rights of violence against women and girls. and Democracy. • Include an intersectional approach in • Showcase policy coherence between implementing the Beijing Declaration EU internal legislation and EU external and Platform for Action. Guarantee action. For instance, international the human rights of all women cooperation must also be included in and girls with disabilities in all EU the next European Gender Equality legislation and policies, including Strategy as well as in the EU Disability international cooperation.
Strategy 2020-2030. Include women ©European Disability Forum and girls with disabilities and accessibility across the EU external actions budget for the period 2020-2027 and invest in developing the capacities of the disability rights movements in the Global South to meaningfully engage in development and humanitarian action. ©European Disability Forum
Pirkko Mahlamäki attended the Civil Society Forum and UN ECE meetings on Beijing +25 in Geneva in October 2019.
• Invest in strengthening the technical capacity of EU staff, both at headquarters and in the EU delegations so they understand of the rights of EDF Women Committee participated women and girls with disabilities. in the consultation on the evaluation of the European Disability Strategy • Create a network of disability focal 2010-2020. points across EU institutions and throughout EU delegations, including clear support and guidance on the rights of women and girls with disabilities.
56 Rising voices • Ensure accessible consultation with • Ensure specific attention in EU-funded women with disabilities and their actions to the most marginalised representative organisations at all groups of persons with disabilities stages (design, implementation and (women and girls, children, indigenous monitoring of the gender action plan; people, persons who are deaf-blind, programming, implementation and persons with psycho-social disabilities monitoring of subsequent projects and and persons with intellectual disabilities, programmes) and at all levels (European among others). and country levels). Including women and girls with disabilities will ensure their • Apply the twin-tack approach to full and effective participation. disability inclusion in development cooperation to the new Gender • Recognise women with disabilities Action Plan. The approach comprises as experts and leaders, supporting mainstreaming a gender perspective the empowerment of women and the rights of women and girls with with disabilities and the capacity disabilities of all ages, and initiatives development of their organisations. targeting women and girls with disabilities. Provide several and good • Ensure all EU-funded actions for examples of mainstreaming and targeted international development uphold the actions in the documentation. principles of accessibility, dignity and the rights of women and girls with • Mainstream an intersectional analysis disabilities to make their own decisions, at country level and support the design live independently and be included in and implementation of policies and the community. initiatives that do not adversely impact
©European Disability Forum on women and girls with disabilities, including through conducting needs and risk assessments.
EDF prepared and conducted a training course on CEDAW, the role of the CEDAW Committee and how to provide alternative reports to the CEDAW Committee. This took place after the EDF General Annual Assembly in Brussels, Belgium, on 2 June 2019.
57 Monitoring and accountability • Strengthen and develop new EU • Use the OECD DAC disability inclusion disability-related indicators. These marker to ensure human rights should be in line with the 2030 Agenda programming is inclusive. and the CRPD and use existing technical capacity to measure the inclusion of • Follow the Inter-Agency Standing persons with disabilities in the EU’s Committee (IASC) guidelines in approach to the SDGs, including humanitarian action and use appropriate international cooperation.82 indicators disaggregated by sex and disability, such as the indicators • Collect and disaggregate data by developed in the framework for Bridging sex, age and disability, and provide the Gap I, in projects and programmes systematic support to partner countries implemented in partner countries. in this through using existing tools, including the Washington Group on Disability Statistics Questionnaire. The EU should ensure support and fund research at European and national levels on the intersectional discrimination and social exclusion that women and girls with disabilities face within the EU and in international cooperation.
100 90 80 70 60 50 40 30 20 10 0 2012 2013 2014 2015 2016 2017
Globally, 28 per cent of disability-relevant aid between 2016 and 2017 had the purpose of inclusion and empowerment Source: Development Initiatives based on OECD DAC Creditor Reporting System.
58 Rising voices ©WHO/Noor/Arko Datto
Accredited Social Health Activist workers Usha Devi, Sonai Devi and Rekha Devi at an eye care screening at Gola community health centre, Ramgarh.
Conclusion
As the world’s leading provider of cooperation policy, programmes and development assistance, the EU has the practice, as identified by EDF. If these gaps potential to deliver transformational change are not addressed, we will not be able to in the lives of women with disabilities meaningfully make progress on the SDGs, through its international cooperation grants nor implement the CRPD in full. and programming. The voices of the women from India Building Partnerships is testament to involved in the Building Partnerships this and evidence of effective EU-India project that are amplified in this paper paint cooperation in disability rights. The positive a vivid picture of the impact that failing to impact it has had on the lives of the women address these gaps makes to the lives of that participated reverberates throughout women with disabilities living in India today. this paper. But they also describe just as vividly and profoundly the impact and real change that But much needs to be done and there are learning about their rights has brought to significant opportunities to strengthen their lives. To reiterate Rekha’s words: and address the gaps in central and state legislation and policy in India and “Before, we would discuss our rights only in the European Union’s international among ourselves. Now, we exert them.”
59 References
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64 Rising voices This publication was produced with the financial support of the European Union. Its contents are the sole responsibility of Sightsavers India/European Disability Forum and do not necessarily reflect the views of the European Union.
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