The Women's Refugee Commission (WRC) improves the lives and protects the rights of women, children, and youth displaced by conflict and crisis. We research their needs, identify solutions, and advocate for programs and policies to strengthen their resilience and drive change in humanitarian practice.
This report was researched and written by Elizabeth Sherwood, disability consultant, and Emma Pearce, senior disability program officer at the WRC, with contributions and feedback from Boram Lee, disability program officer; Dale Buscher, senior director of programs; Anna Myers, research officer; Deni Robey, director of strategic communications; and Joan Timoney, director of advocacy and external relations. The report was edited and designed by Diana Quick, director of program communications.
Thank you to the individuals and organizations that contributed their time, expertise, and recommendations to this research through the online survey and key informant interviews. Special thanks to Cara Elizabeth Yar Khan, UNICEF; Dwi Ariyani, Disability Rights Fund; Kirstin Lange, UNHCR; Ola Abu AI Ghaib, Disability & Humanitarian Affairs Consultant; Ulrike Last, Handicap International; Diana Samarasan, Disability Rights Fund; Mary Keogh, CBM International; Neema Namadamu, Maman Shujaa, DRC; Rachel Kachaje, Disabled Persons International; Sarah Martin, GBV AoR & gender consultant; Siobhan Foran, IFRC; Stephanie Ortoleva, Women Enabled International; and Susan Dunn, Mobility International USA .
This project was made possible with the generous support of the Australian Government Aid Program and UN Women.
© 2016 Women's Refugee Commission
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While humanitarian organizations are increasingly recognizing women and girls with disabilities in policies and guidelines, 1 there are still significant gaps in operationalizing this at the field level. The needs and capacities of women and girls with disabilities are often under-represented in gender, protection, and disability forums in a humanitarian crisis. The Secretary-General's Report for the World Humanitarian Summit notes that women and girls with disabilities face multiple forms of discrimination, 2 adding to their risk of violence, abuse, and exploitation. 3 The voices of women and girls with disabilities in affected populations are often not heard, their capabilities not recognized, and they have little opportunity to participate in and lead decision-making.
The Women's Refugee Commission (WRC) project Strengthening the capacity of networks of women with disabilities on humanitarian issues, 4 funded by the Australian government and UN Women, supports organizations of women with disabilities to advocate on humanitarian issues at national, regional, and global levels. A global mapping identified and documented the role of organizations of women with disabilities (women's DPOs) in humanitarian response, and effective strategies for the inclusion of women and girls with disabilities in humanitarian and post-conflict programs.
While global, national, and organizational policies and commitments on protection and empowerment of affected populations apply to persons with disabilities, they often lack specific reference to women and girls with disabilities. There is also no globally endorsed operational guidance to support humanitarian actors to implement policies and commitments to disability inclusion in a systematic way, by ensuring appropriate human and financial resourcing; strengthening staff knowledge, attitudes, and practices; and monitoring access and inclusion of women and girls with disabilities. As a 6 result, women and girls with disabilities fall through the cracks in both disability and gender policy and programming in humanitarian contexts, with no enforced accountability mechanism to ensure their inclusion across different sectors.
There are, however, some strategies that promote the inclusion of women and girls with disabilities in humanitarian action. These include advocacy and technical support by women's DPOs, and positioning of women with disabilities in leadership roles in humanitarian organizations, programs, and activities. Such strategies have wide-ranging impact on inclusion across a humanitarian response by bringing appropriate expertise, demonstrating skills and capacities, and raising awareness among humanitarian actors and affected populations alike.
The expertise of women's DPOs remains largely untapped in humanitarian crises, from the onset of an emergency through to recovery and development, as they face a vicious cycle of lack of funding and less organizational capacity. Their exclusion from both the disability and the women's rights movements further hinders their capacity development and leadership opportunities in the humanitarian sector.
Effective inclusion of women and girls with disabilities in humanitarian action requires collective action by States, UN agencies, and humanitarian, development, and disability actors.
• Strengthen accountability for inclusion of women and girls with disabilities by developing gender-sensitive inter-agency guidelines on disability inclusion in humanitarian action. Such guidelines should:
• Increase support to organizations of women with disabilities in crisis-affected countries by:
• Advance gender equality in humanitarian and development organizations by:
• Promote the leadership of women and girls with disabilities in humanitarian action by:
As highlighted in the Report of the Secretary-General for the World Humanitarian Summit, 5 women and girls continue to be left behind in humanitarian action. Those with disabilities, an estimated 15 percent of the population, 6 face multiple forms of discrimination, adding to their risk of violence, abuse, and exploitation. 7 The voices of women and girls with disabilities in affected populations are often not heard, their capabilities not recognized, and they have little opportunity to participate in and lead decision-making.
The Convention on the Rights of Persons with Disabilities (CRPD) requires that state parties “ensure that protection services are age-, gender- and disability-sensitive” (Article 16). 8 While humanitarian organizations are increasingly recognizing people with disabilities in policies and guidelines, 9 there are still significant gaps in operationalizing this at field levels, and the specific needs and capacities of women and girls with disabilities are often under-represented in gender, protection, and disability forums in a humanitarian crisis. Furthermore, women's DPOs, which can play a critical role in bridging the development/humanitarian divide in an emergency, and also in strengthening community resilience in situations of protracted crisis, are not meaningfully included in humanitarian coordination and decision-making.
It is critical that global humanitarian and development goals on gender and disability, such as those made in the Sustainable Development Goals, 10 the Sendai Framework for Disaster Risk Reduction, 11 and the Agenda for Humanity, 12 are inclusive of women and girls with disabilities and their representative organizations from crisis-affected communities. Only then will the rhetoric to “leave no one behind” be a reality. Towards this goal, the WRC project Strengthening the capacity of networks of women with disabilities on humanitarian issues, 13 funded by the Australian government and UN Women, seeks to support advocacy and leadership of women with disabilities on humanitarian issues at national, regional, and global levels. This report documents the findings and recommendations drawn from a global mapping to document positive practices, gaps, and opportunities 9 for inclusion of women and girls with disabilities in humanitarian programming. The mapping also documented the role of women's DPOs in humanitarian responses, identifying opportunities and capacity development goals.
Rigorous peer-reviewed research on the inclusion of women and girls with disabilities in humanitarian action remains limited. 14 However, there is a growing body of literature, including organizational assessments and reports, and UN agency and government policies and strategies, that recognizes that women and girls with disabilities face additional risks in humanitarian crisis, and calls for their participation in humanitarian program design, implementation, and monitoring. 15
It is widely acknowledged that humanitarian organizations, including UN agencies and local and international nongovernmental organizations ( NGOs ), often fail to identify and meet the needs of women and girls with disabilities, including those needs related to their disability, but also to their age and gender. Women and girls with disabilities face attitudinal barriers — from community members, their families, and service providers alike — as well as environmental and communication barriers. These barriers not only reduce their voice and participation in program planning, but also their access to essential services, including sexual and reproductive health, and gender-based violence (GBV) prevention and response activities. 16
10Positive practices on inclusion of women and girls with disabilities are being increasingly documented across the development sector, but less so across the humanitarian sector. The Making it Work Initiative on Gender and Disability Inclusion 17 has documented 11 good practices in 10 countries. Of the 11 initiatives profiled, only one was directly related to humanitarian programing. 18 In this example, the International Rescue Committee, in partnership with the WRC, implemented a participatory action research project with refugee communities in Burundi, Ethiopia, and Jordan, as well as in conflict-affected communities in Northern Caucasus. They developed concrete actions to improve the accessibility of their women's protection and empowerment programs, engaging women and girls with disabilities in evaluating which actions were most important for them. 19
The need for program evaluation around the inclusion of women and girls with disabilities is clearly outlined in several UN agency and donor government policies. 20 Yet, very little material was found that reported on the implementation of these polices. Furthermore, there was no documented evidence of the impact these policies may have on the lives of women and girls with disabilities in humanitarian settings.
There are no gobally endorsed inter-agency guidelines on disability inclusion in humanitarian action, and other forms of operational guidance tend to refer to persons with disabilities as a homogenous, often degendered, group. For example, the 2015 Inter-Agency Standing Committee Guidelines for Integrating Gender-Based Violence Interventions in Humanitarian Action (IASC GBV Guidelines), while recognizing the vulnerability of women and girls with disabilities, provides only broad recommendations on persons with disabilities. Throughout the guidelines, there are calls for humanitarian actors to “give particular attention” to women with disabilities, but no specific guidance about how to include them in existing programming. 21
11The Minimum Standards for Age and Disability Inclusion in Humanitarian Action, 22 prepared by a consortium of age and disability actors, however, provides more practical references and specific recommendations on the inclusion of women and girls with disabilities in different sectors of humanitarian action. For example, these standards detail how humanitarian actors should ensure that women and girls with disabilities have “private spaces to wash themselves, to wash and dry stained clothing and cloths used for menstrual hygiene management, and to dispose of sanitary materials,” as well as “sufficient space for the assistance of a carer if required.”
A commonly recommended strategy for disability inclusion is the engagement of organizations of persons with disabilities (DPOs) to improve referral processes and access technical expertise. Available research suggests that local disability actors and DPOs often lack a connection with affected populations living in their countries. A report from 2008 found that refugee women and girls with disabilities were largely not connected with local DPOs and local DPOs were not informed or aware of the unique needs and vulnerabilities of displaced and refugee women and girls with disabilities living in their countries. 23 There are, however, some isolated examples in more recent literature of women's DPOs engaging in advocacy on inclusion of women and girls with disabilities affected by crisis and conflict in national policies and programs. 24 Such examples are by all measures limited, but provide 12 a positive progression that should be evaluated and scaled up.
There is no guidance for women with disabilities and their representative organizations on how they can become more active in humanitarian programming. Similarly, there is no detailed guidance on how humanitarian actors should be engaging women with disabilities and their organizations in decision-making processes, representing a gap in accountability within the humanitarian system. Hence, the WRC conducted a global mapping to identify positive practices for systematic inclusion of women and girls with disabilities in humanitarian action, and to develop recommendations to strengthen the participation and leadership of women and girls with disabilities in humanitarian action.
The online survey sought to identify initiatives relating to disability gender, and humanitarian action, including project resources, trainings, and positive programing practices that may have not yet have been documented in literature. Two surveys were developed – one for humanitarian actors and one for disability actors – and hosted on an online survey platform for 30 days. Invitations to complete the surveys were distributed through emails, online list serves, and using social media accounts of relevant disability, gender, and humanitarian groups. Consultations were held with the accessibility team at Survey Gizmo in order to improve the accessibility features of the survey for people who use screen reader technology.
The “Online Survey for Humanitarian Professionals: Including Women and Girls with Disabilities” was designed for participants with expertise in gender and/or humanitarian action. There were 91 survey respondents; 38 percent identified as male, 60 percent as female, and 1.3 percent as other. 27 Over half (56 percent) of the respondents were from NGOs and 21 percent from UN agencies. See Chart 1 for a breakdown of types of humanitarian organizations. Survey participants were from 35 countries, across six regions. Sub-Saharan Africa had the highest number of participants, followed by the Middle East and North Africa region. Participants reported their organizations were involved in a wide range of humanitarian programs and activities. Over half of respondents reported undertaking emergency preparedness, women's empowerment, prevention and response to GBV, health, and advocacy activities within the scope of their humanitarian programming.
This pie chart depicts the result of a survey carried out online on different types of organizations of Humanitarian Professionals. These results are being shown giving a number of colours for each type of organizations.
It can be seen that “Non-Governmental Organizations” represented by aqua-blue colour, occupy half of the place in the chart that is “56.2%” which is above 50%. Among others “United Nations” represented by red colour, occupy “21.3%”, then “Write In” represented by blue colour, occupies “11.3%”. After that comes “Academic organizations” represented by purple colour, occupy “5.0%” then “Community-based Organizations” represented by green colour, occupy “3.8%” and lastly “Government Organizations” represented by orange colour, occupy least place among others “2.5%”.
The “Online Survey for Disability Actors: Including Women and Girls with Disabilities in Humanitarian Programming” was designed for people with expertise in the disability sector and open to participants who are currently affiliated with the national, global, and regional DPO networks. There were 35 survey respondents, of which 73 percent identified as female and 27 percent as male. Survey participants were from 16 countries, across six regions globally. Sub-Saharan Africa had the highest number of participants, followed by the Asia-Pacific Region. The majority of survey respondents were representatives from DPOs (74 percent), of which 84 percent were from women's DPOs. Survey respondents reported that their organizations conducted a range of activities shown in Chart 2: Types of disability programs and activities that disability organizations conduct.
This bar graph shows the result of a survey carried out online on various Types of Disability Programs and Activities for Disability Actors. Here various results are shown through various coloured bar.
In the Bar line we can view a deep pruple coloured bar which depicts “Advocacy on the implementation of the Convention on the Rights of Persons with Disabilities” giving 74.2%, then it is an aqua-blue bar which depicts “Disability policy and program development” containing 48.4%, then comes a green coloured bar which shows “Capacity building representative organizations of persons with disabilities” giving 67.7%, after that it is a orange coloured bar which shows “Formation of grass-roots and self-help groups of persons with disabilities” containing 45.2%, after it comes a red coloured bar showing “Disability service provision ( e.g. health, rehabilitation, provision of aids and devices)” which contains 35.5%, then it is a purple coloured bar which depicts “Technical support, training and capacity building on disability inclusion” containing 64.5%, then comes a blue coloured bar showing “Research, Evaluation & Learning” which contains 51.6%, then it comes an aqua-green coloured bar which shows “Funding for disability programming” containing only 9.7%, then it is a yellow coloured bar showing “Policy Development and Implementation” containing 19.4% and lastly it is a deep red coloured bar representing “Other programmes” which also have a representation of 9.7%.
Survey data was collected and analyzed using Survey Gizmo. Surveys with missing data were removed from the final analysis. The main research questions guided the analysis process for both of the online surveys. Initial stratified analysis was conducted based on key demographic or cohort groups to detect information most relevant to each of the research questions. Themes were generated from openended questions on facilitators and barriers to inclusion, as well as strategies and support needed. Results from the online survey were used to inform design of the key informant interview question guides.
Key informant interviews are designed to collect information from people with firsthand knowledge and expertise who could provide insight on the nature of problems and give recommendations for solutions. 28 As such, semi-structured interviews were conducted with individuals who are actively engaged in the disability gender, and humanitarian community. All interviews took place on the phone or via internet-based phone conferences. The same person facilitated all interviews. As needed, tailored questions were added and unstructured discussions were occasionally used to solicit the most relevant information from each expert. Interviews were transcribed and relevant data was used to identify key recommendations for this report. Twelve interviews, each approximately an hour long, were completed. All key informants were women, and half identified as women with disabilities. Informants represented a range of organizations across the disability and humanitarian sectors, including the International Federation of the Red Cross, Women Enabled, the GBV Area of Responsibility, Disabled People's International, CBM International, Disability Rights Fund, UN High Commissioner for Refugees (UNHCR), UNICEF, and Handicap International.
This phase of the mapping afforded organizations and networks of women with disabilities the opportunity to share more details about their strengths, gaps, and capacity development goals in humanitarian action. A participatory self-assessment exercise was developed for the women DPO leaders to gather information from the staff, volunteers, and members of their organizations. Selected women's DPO leaders were emailed the tool, provided an introduction to the tool via conference call, and instructed on how to use the tool to gather information from their members.
Eleven organizations and networks were invited to complete the self-assessment. By the end of the data collection phase, nine organizations submitted their findings to WRC for more detailed analysis. Two organizations were able to work on the assessment in person with members; five organizations worked on the assessment with members remotely and submitted summarized results; and two organizations had executive members speak directly to the WRC, completing the assessment jointly on a conference call. Organizations and networks of women with disabilities from Afghanistan, Haiti, Kenya, Pakistan, Rwanda, Sri Lanka, Uganda, and Zimbabwe completed the self-assessment.
Survey respondents were invited to participate through their affiliation with a network and/or their connection to the disability, humanitarian, and gender communities to share positive practices on inclusion of women and girls with disabilities. As such, most respondents already had some interest and/or experience in disability inclusion. This approach enabled the WRC to identify positive practices and what works, where, and why in inclusion of women and girls with disabilities in different humanitarian contexts. 29 Findings may not, however, reflect the range of challenges that less experienced humanitarian organizations/actors may face and/or perceive relating to disability inclusion. Furthermore, the survey findings are biased towards larger organizations and agencies with linkages to global communities of practice, those with access to the internet, and those able to read and write in English.
The participatory self-assessment was designed to support remote data collection from grass-roots groups of women with disabilities in their local languages. Some women's DPO leaders, however, had limited in-person contact with members, which made it challenging for them to complete the activity as outlined. Additionally, some organizations commented that the self-assessment tool was too technical and/or challenging to understand. This resulted in a number of semi-complete sections in the assessments, but also possibly reflects gaps in knowledge relating to humanitarian action. The WRC used existing DPO partnerships for the participatory self-assessment, which limited the scope of the findings to certain geographical regions, notably Africa and South Asia. Key informant interviews were then used to gather information from other regions that were not represented in the DPO self-assessment data.
While efforts were made to make the online survey, DPO self-assessment, and interviews as accessible as possible for participants, there is a high likelihood that some individuals with disabilities, such as those with intellectual disabilities, were underrepresented in this mapping. Lastly, small-scale initiatives in isolated areas that have not yet been documented and shared with the sector, or have not been published in English, may not have been detected during this mapping process.
Seventy-five percent of humanitarian actors in the online survey reported that their organizations' activities in humanitarian settings were inclusive of women and girls with disabilities. The most commonly cited actions taken by such agencies were including women and girls with disabilities in needs assessments (73.5%); staff training and capacity building on disability inclusion (61.8%); and prioritizing this group for assistance and services (61.8%).
Despite these positive findings, only 35 percent of respondents reported setting specific targets or indicators for the participation of women and girls with disabilities in humanitarian activities, presenting significant challenges to monitoring of access and inclusion in implementation. Furthermore, less than half the humanitarian actors surveyed included women with disabilities as staff and/or volunteers in their programs; and only 41 percent networked or communicated with women's DPOs, suggesting that women with disabilities remain largely isolated to the role of beneficiary in humanitarian settings.
Both disability and humanitarian actors reported that while policies and commitments on protection and empowerment of affected populations apply to persons with disabilities, they lack specific reference to women and girls with disabilities. This extends to policies and commitments that are focused on gender equality and women's protection, including women, peace, and security resolutions and action plans. Furthermore, while all agree these policies should equally benefit and include women and girls with disabilities, there is a gap in institutional support to translate these into action at the field level, including dedicated funding to ensure that programs reach marginalized groups of women and girls, such as those with disabilities. Essentially, women with disabilities fall through the cracks in both disability and gender programming, with no enforced accountability mechanism to ensure their inclusion in the humanitarian sector.
“Most resolutions on women, peace, and security have no mention of women and girls with disabilities, and when they do, they are only from 18 the protection standpoint. They are never, or hardly ever, viewing women with disabilities as actors and peace builders. They are not engaged in revitalizing their countries post-conflict.”
Humanitarian actors ranked the “attitudes of family members and communities” as the second most significant challenge to including women and girls with disabilities in humanitarian activities. Negative attitudes around disability, the overall status of women in certain communities, and fearful and protective reactions by family members were listed as factors that presented a challenge for humanitarian actors in their work. Some humanitarian actors reported that families may not disclose, or may hide, a woman or girl with a disability, making them even more “invisible.” Furthermore, humanitarian actors reported that activities to change negative attitudes towards women and girls with disabilities are often met with resistance and can foster a sense of distrust between them and the community.
These findings resonate with reports from disability actors that there is a “fear amongst women with disabilities in conflict regions to open up to outsiders” because their families or community members perceive this may expose them to further threats or violence. In some settings, cultural and language barriers also exist between the local DPOs in the host community and women and girls who were living as refugees, adding further challenges to engaging them in humanitarian action. Lastly, others said that crisis-affected communities perceive that there is “no hope” for women and girls with disabilities, and as such community leaders simply do not view them as a “priority” or represent their needs in community decisions.
Humanitarian actors perceive that they are ill equipped to ensure that women and girls with disabilities are included in humanitarian action, particularly where there are no comprehensive programs for the roll-out, implementation, and monitoring of organizational policies at field levels. A participant in the online survey highlighted this point:
While training on disability is conducted in many settings, it may have only limited 19 impact on the attitudes of field staff, and disability actors report that humanitarian actors continue to perceive women with disabilities as the objects of charity and protection, rather than as active participants in humanitarian action or change agents in their community. Survey respondents and key informants highlighted that while there are some isolated pilot projects on the inclusion of women and girls with disabilities that have exposed humanitarian actors to the skills and capacities of this group, 30 these are not yet to scale or systematic across the humanitarian sector.
As one respondent explained, there is “a lack of strong advocates for women and girls with disabilities [and] a lack of strong partners who can deliver programs in this area.” In the absence of strong accountability at field levels, inclusion of women and girls is largely reliant on champions to advocate for inclusion of women with disabilities, and partners who are prepared to focus on this group. Women's DPOs, where they exist, can play a critical role in this process. Humanitarian actors, however, described practical barriers to organizations of women with disabilities having contact with conflict-affected populations.
While broader organizational policies remain relevant to women and girls with disabilities, participants highlighted that explicit organizational commitments in the form of policies that integrate both disability and gender mainstreaming, such as UNHCR's Age, Gender, and Diversity policy, 31 fostered greater attention to the needs of women and girls with disabilities in humanitarian programming. Some participants went further, however, 20 highlighting the importance of setting standards and indicators, as well as training and follow-up, to ensure the implementation of such policies.
Other positive examples highlighted in the survey and interviews related to advocacy by women's DPOs on the inclusion of women and girls with disabilities in humanitarian action. As one humanitarian actor reported, “[A]dvocacy by groups representing the needs of women and girls with disabilities has been critical to bringing this issue to the attention of health and humanitarian actors.”
Furthermore, humanitarian actors highlighted the importance of partnering with women's DPOs, drawing on their expertise and influencing program delivery to be more inclusive of women and girls with disabilities affected by crisis. A representative from the Consortium of Reproductive Health Associations (CORHA) in Ethiopia describes “...the fact that our consortium has disability focusing members, who allow us to network with the organizations of persons with disabilities, has helped us to be inclusive of issues of disabilities in our activities.”
21Respondents and key informants also highlighted the importance of having women with disabilities in leadership roles in humanitarian organizations, programs, and activities, and the wide-ranging impact this can have on inclusion across a humanitarian response. These respondents acknowledged that women with disabilities and their organizations bring both expertise and critical awareness-raising when taking a leadership role among humanitarian stakeholders.
These women leaders are often representing women's DPOs in humanitarian coalitions and/or forums, strengthening inclusion beyond their own body of work or an individual humanitarian partner. For example, one survey respondent from a UN agency in the Central African Republic said that having an implementing partner agency focused on women with disabilities, and also led by a woman with disabilities, was a critical factor to raising the profile of this group in their women's empowerment work.
There is, however, still a significant gap in women with disabilities in leadership roles within the humanitarian coordination system. The mapping was only able to identify one example of a woman with a disability who was part of the senior management team for a UN agency responding to crisis, presenting a positive model for other humanitarian organizations and actors (see box, page 18).
22Several survey respondents and key informants referenced the critical role that donor governments can play in influencing humanitarian actors to include women and girls with disabilities. Donors are increasingly calling for partners to conduct a gender analysis and to describe how they will reach persons with disabilities in their proposals for humanitarian programs, which is perceived as a facilitator to promoting inclusion of women and girls with disabilities in humanitarian action. Only two humanitarian actors, however, described including women and girls with disabilities and/or strengthening their programming for women and girls with disabilities as a result of support from such donors. Women's DPOs also reported facing significant challenges accessing donor government funds, relying instead on funding available through nongovernment grant-makers and foundations, such as the Disability Rights Fund.
Sixteen survey respondents were from women's DPOs, of which 11 were actively including women and girls with disabilities from crisis-affected communities in their work. All of these organizations were raising awareness with women and girls with disabilities about their rights, with 80 percent directly consulting with women and girls with disabilities from affected populations. Sixty percent of these organizations were also mobilizing women and girls with disabilities into grass-roots and self-help groups, and had established referral systems with humanitarian actors.
Representatives from women's DPOs responding to the survey reported undertaking activities to promote inclusion of women and girls with disabilities in humanitarian action. The most common activities undertaken were training for humanitarian actors (87%), targeted advocacy for the inclusion of women and girls with disabilities in humanitarian action (81%), and networking and alliance building with humanitarian actors (75%).
As stated above, women's DPOs can 25 play a critical role in identifying the concerns of women and girls with disabilities in affected populations, highlighting gaps in the humanitarian system where their needs, rights, and capacities are not being fully recognized, fostering not only inclusion, but also accountability. Women's DPOs shared their experiences conducting field visits to refugee camps in Malawi, where they identified some of the protection concerns faced by refugee women and girls with disabilities, including “selling their bodies for rations, [as] they were so focused on day-to-day survival.” Information gathered by the women's DPO was then shared with national and international protection actors, highlighting the specific needs of women and girls with disabilities affected by crisis and the demand for services to meet these needs.
Two positive examples were identified in the mapping of women's DPOs undertaking assessments and using information to raise the profile of issues of women and girls with disabilities – one from the Democratic Republic of Congo (DRC) and one from the Occupied Palestinian Territories. In both examples, women's DPOs led initiatives, to collect data and personal stories of women and girls with disabilities who were living in affected communities. They developed communication strategies and activities that allowed them to share these stories with new audiences, creating unique platforms that facilitated interactions and networking opportunities between their DPOs and key stakeholders.
26
A number of examples identified in the mapping detailed efforts of national DPOs to connect with refugee and displaced women and girls with disabilities by inviting them to organizational workshops and planning meetings, engaging them in the wider advocacy work on these organizations. Women's DPOs described how this helped them to understand the needs of refugee women and girls, but also “motivated [us] to continue working with them in solidarity.”
Women's DPOs are also working with women and girls with disabilities from crisisaffected communities to form their own groups. These groups provide a forum for education and information sharing, as well as mobilization for advocacy on rights. Women's DPOs with more experience can therefore mentor and support fledgling groups of women and girls with disabilities in humanitarian contexts, which in turn strengthen the women's rights and disability rights movements at national levels.
27More inclusive programming has been demonstrated in humanitarian contexts where groups of women with disabilities are well organized and mobilized. For example, it was reported that group members in the Dadaab Refugee Camp in Kenya had received training in GBV prevention and response. Women from this DPO are now playing a key role in assisting with case conferencing, training activities, and human rights monitoring. They have a better understanding of the vulnerabilities of women and girls with disabilities in the camp and they are now directly targeting camp management and protection leads in advocating for these needs to be met.
Finally, mobilization of women and girls with disabilities in crisis-affected communities provides valuable peer support. One women's DPO leader explained that during a crisis in her country, many women and girls with disabilities were left behind or abandoned when families needed to flee an area quickly because of escalating violence. For such women, connecting with other women who have faced similar challenges was a critical step to rebuilding their self-esteem and confidence, supporting their recovery from violence and “outlook on the future.”
Women's DPOs bring insight, knowledge, and expertise to humanitarian partnerships. For example, the National Union of Women with Disabilities of Uganda (NUWODU) hosted a regional workshop that focused on strengthening the role of women's DPOs in humanitarian action. The workshop engaged other humanitarian actors and strengthened their own organizational commitment to supporting women and girls who are living as refugees in Uganda. They have since increased their activities and interactions with humanitarian actors in their country.
Partnerships with humanitarian actors have also extended to global advocacy levels.
28The Network of African Women with Disabilities (NAWWD) has started to expand its work around supporting women and girls with disabilities in crisis and conflict on the African continent, where it has active members from 10 countries across the region. NAWWD has worked in partnership with the WRC to integrate the issues of women and girls affected by crisis and conflict into international advocacy forums, such as the World Humanitarian Summit and the Commission on the Status of Women.
Finally, women's DPOs have acknowledged that they also benefit from the expertise of humanitarian actors, particularly when partnering with fellow women's organization that may have more experience in crisis and conflict settings. Such partnerships bring credibility among humanitarian actors, and assist them to develop and adapt their messages to new audiences and stakeholders.
Lack of funding was voiced as the most significant challenge for women's DPOs to engage in humanitarian action. Women's DPOs in resource-limited countries, where crises commonly occur, already face financial resourcing challenges. Most of their members have been systematically excluded from educational and livelihoods opportunities throughout their lives, and as a result, these organizations may not have the same financial, administrative, and organizational skills of other women's organizations. Due to their size and capacity, they are often unable to access government donor funds, relying instead on a very limited number of nongovernment grant-makers. This makes it even more challenging for them to be responsive in crisis situations. Furthermore, survey respondents and key informants explained that funding mechanisms and systems that are activated during humanitarian emergencies offer very little opportunity, as they are difficult for them to navigate and access. Hence, women's DPOs face the quandary of organizational capacity limiting their funding opportunities, which in turns limits their capacity to strengthen their organizations. As a result, humanitarian responses and affected communities miss out on the expertise of such individuals and groups.
The lack of organizational capacity faced by women's DPO could be related to their reported exclusion from opportunities within both the disability and the women's rights movements. Findings suggest that women with disabilities still lack space, voice, and representation in both disability and women's rights initiatives.
Respondents and key informants reported that key issues for women and girls with disabilities are often not given high enough attention and/or reference in disability initiatives. Humanitarian actors reported that where DPOs are increasingly engaged in humanitarian action, these initiatives may not be gender sensitive, with the issues 30 of women and girls with disabilities being seen as “add-ons...not real, core issues.” Furthermore, women with disabilities from the mapping explained that they feel “underrepresented” and that they do not have “adequate exposure or opportunities to learn about women's rights, gender-based violence, sexual and reproductive health.”
This challenge translates into negative practices at the field level where it is reported that women and girls with disabilities are excluded from community leadership structures. They are often under-represented in mechanisms for representation of persons with disabilities in crisis-affected communities ( e.g. , disability associations and self-help groups), as well as in initiatives to foster women's leadership and empowerment. 32
While having women with disabilities in leadership positions or working as humanitarian actors can have a positive outcome on inclusion, they face many obstacles in this process with their employers, peers, and the communities with which they work. Perceptions (and misperceptions) about their capacity to contribute, which are grounded in societal norms relating to both disability and gender, affect the participation of women with disabilities at all levels in the humanitarian system.
– Disability actor, and former humanitarian actor, Indonesia
As local civil society organizations, women's DPOs have historically been excluded from the humanitarian sector, and have had only limited opportunities to engage in humanitarian training or education. Hence, women's DPOs reported in their self-assessments that they find it difficult to articulate and effectively communicate on humanitarian issues, including a lack of awareness of humanitarian principles. This barrier to participation was recognized by humanitarian actors who said, “The humanitarian field is just not necessarily a friendly space for actors from civil society, especially persons with disabilities – it is just not an inclusive system.”
All nine groups completing the self-assessment reported being unable to identify the humanitarian coordination mechanisms and/or forums, and were not fully aware of common protection mechanisms, such as referral process for GBV response. As such, they have limited capacity to support women and girls with disabilities who may have experienced violence, abuse, and exploitation during a crisis, especially those who may be refugees or asylum seekers.
All organizations in the self-assessment requested capacity-building opportunities that would enable women's DPOs to better understand the current humanitarian architecture. Self-assessment results showed that participating DPOs would like a better understanding of humanitarian principles and frameworks, but also how the humanitarian system works and entry points for their organizations to influence a response in a new crisis.
32Capacity-building on humanitarian and protection principles needs to extend also to the ways in which women's DPOs engage women and girls with disabilities who are from vulnerable groups, such as survivors of violence. A women's DPO in Nairobi will work this year on “finding a way to respectfully share the stories of the women and girls with disabilities who are living in Nairobi, so that others can understand their needs [and] vulnerabilities, but also [their] potential to contribute to our movement.”
Every organization that participated in the self-assessment expressed a desire for more in-depth gender-specific training. Women from DPOs specifically mentioned wanting to learn more about gender mainstreaming approaches and how to influence disability actors to be more gender sensitive. This request for gender-related training was supported by findings in the online survey, where participants from the disability survey articulated the need to “better understand the intersection between gender and disability in order to be more effective.” Disability actors, from the survey, self-assessment, and interviews, also drew attention to the need for more opportunities to learn about sexual and reproductive health and to engage with actors in the women's movement, as well as with GBV and sexual and reproductive health service providers.
All the women's DPOs that set humanitarian goals as part of the self-assessment process mentioned that they want to develop more concrete programming that works to address the needs of women and girls with disabilities who are affected by crisis and/or conflict. The groups wanted to understand where and how they could connect with donors interested in funding their efforts. Additionally, women's DPO members expressed a desire to build their capacity in grant writing and project development in order to be more competitive for funds directed towards women's groups and human rights organizations.
34Women's DPOs mentioned their need to learn more about project management and reporting. The request for opportunities to network between disability, gender, and humanitarian organizations was the highest-ranking request for support by disability actors in the online survey. This shows a need for more opportunities to meet with stakeholders who are funding and supporting local actors in humanitarian efforts.
“Get to know us, not just as victims, but as women working to improve our own futures.”
While global, national, and organizational policies and commitments on protection and empowerment of affected populations apply to persons with disabilities, they often lack specific reference to women and girls with disabilities. There is also no globally endorsed operational guidance to support humanitarian actors to operationalize these commitments in a systematic way in every response, to ensure adequate human and financial resourcing, or to monitor implementation. Essentially, women with disabilities fall through the cracks in both disability and gender programming in humanitarian contexts, with no enforced accountability mechanism to ensure their inclusion across different sectors.
States, UN agencies, humanitarian actors, development actors, and women's DPOs can play a critical role in correcting this gap by supporting the development and implementation of gender-sensitive global guidelines on inclusion of persons with disabilities in humanitarian action. Such guidelines would drive change and foster accountability within the humanitarian sphere, so that every humanitarian effort includes the policies, systems, and mechanisms necessary to ensure that persons with disabilities have access to services and assistance and participate in decisionmaking on an equal basis with others. It is, however, critical that gender issues and the empowerment of women and girls with disabilities be reflected throughout these guidelines. The guidelines should:
Organizations of women with disabilities play a critical role in monitoring the protection concerns in a crisis, raising awareness on the issues of women and girls with disabilities, and providing technical support for humanitarian actors on inclusion. Furthermore, these organizations have the demonstrated knowledge and skills to mobilize women and girls with disabilities in affected populations to advocate for their own rights. They can bridge the humanitarian/development divide in an emergency, and strengthen community resilience in situations of protracted crisis. Their value to humanitarian action, however, remains unrealized, as they face a vicious cycle of lack of funding leading to less capacity. It is critical to increase support to women's DPOs in crisis-prone countries:
Having women with disabilities in leadership roles in humanitarian organizations, programs, and activities has a wide-ranging impact on inclusion across a humanitarian response. Women with disabilities and their organizations bring expertise, and also critical awareness raising, when taking a leadership role among stakeholders, as “just being in the room, at the decision-making table” reminds people from all sectors 36 to consider the diversity of the population they are serving.
Societal norms relating to both disability and gender, however, affect the educational and livelihoods opportunities of women and girls with disabilities throughout their life, and their participation at all levels in the humanitarian system. In a crisis, women and girls with disabilities are excluded from community leadership and consultation processes, and they have little opportunity to engage in humanitarian training or education that might allow them to play a greater role in humanitarian leadership.
14 The WRC undertook a background literature review to document the current evidence base on effective strategies and ongoing gaps in inclusion of women and girls with disabilities in humanitarian programming, and the role of organizations of women with disabilities in humanitarian action. Fifty-five relevant items met the inclusion criteria. Of these, only seven were from peer-reviewed journals or publications. The majority of literature on this topic is from non-peer-reviewed papers, and organizational reports, policies, or strategies.
16 Women's Refugee Commission and International Rescue Committee, “I see that it is possible”: Building capacity for disability inclusion in gender-based violence programming in humanitarian settings (2015); Human Rights Watch, ‘As if We Weren't Human’ Discrimination and Violence against Women with Disabilities in Uganda (2010). World Humanitarian Summit secretariat, Restoring Humanity: Synthesis of the Consultation Process for the World Humanitarian Summit (2015).
20 Development for All 2015-2020, Strategy for strengthening disability-inclusive development in Australia's aid program (Canberra: Commonwealth of Australia, 2015); United Nations High Commissioner for Refugees, Action against Sexual and Gender-Based Violence: An Updated Strategy(2011 ); UK Department for International Development (DFID) Disability Framework 2014: Leaving No One Behind(2014).
24 Gulu Disabled Persons Union, More than just a ramp (2010); Network of African Women with Disabilities, Commission on the Status of Women 59th Session Report (NAWWD, 201 5); NSRP Nigeria, What Violence Means to Us: Women with Disabilities Speak (2015). See also: Susan Sygall & Susan Dunn, Women with disabilities leading the way toward inclusive emergency response (2014).
25 https://consultations,worldhumanitariansummit.org/bitcache/5a7c81 df22c7e91 c35d456a1574aa6881bb044e4? vid=569102&disposition=inline&op=view