Introduction
Humanitarian crises are on the rise, with conflicts and natural disasters contributing to the greatest forced displacement of people since World War II. In 2014, over 59 million were displaced worldwide because of persecution, conflict, generalized violence, and human rights violations (UNHCR 2015), and in 2013 another 22 million were displaced by natural disasters (Internal Displacement Monitoring Centre 2014). These individuals, their families and communities, seek safety inside their countries as internally displaced people, or flee across borders as refugees and asylum seekers. Across these populations, there may be as many as 7.2 million adolescent girls.1
Adolescence (10 to 19 years) is a critical period in the development of girls as events, choices, and opportunities shape their lives (UNICEF 2011). A variety of factors will uniquely shape both the risks and opportunities that adolescent girls experience in humanitarian contexts (Paik 2014; Plan International 2013; Robles 2014). Disability is a critical factor since approximately 15 percent of any population will be persons with disabilities (WHO and World Bank 2011), with potentially higher proportions among populations affected by conflict (HelpAge International and Handicap International 2014). The United Nations Convention on the Rights of Persons with Disabilities (CRPD) requires State parties to ensure that persons with disabilities are protected in situations of risk or humanitarian crisis, and “that protection services are age-, gender- and disability-sensitive” (United Nations 2006: 12).
Drawing on field research conducted by the Women’s Refugee Commission (WRC), in this report we explore how age, gender, and disability affect identity and power in relationships, households, and communities in humanitarian contexts, influencing both the risks and opportunities faced by adolescent girls with disabilities and girls living in households of persons with disabilities. Lessons learned from field research and pilot projects inform principles to foster the participation of girls with disabilities in adolescent girls’ programming, which can, in turn, play a critical role in mitigating their risk of violence, abuse, and exploitation in humanitarian contexts.
Background
There is a distinct gap in research on the intersection between and among age, gender, and disability in humanitarian contexts. This section provides an overview of the available field research on disability in humanitarian settings, and theoretical research on the intersection of these factors, highlighting implications for, and ongoing gaps in, knowledge on adolescent girls with disabilities affected by crisis and conflict.
Girls with Disabilities: The Evidence Gap in Humanitarian Settings
Persons with disabilities form one of the most socially excluded groups in any displaced or conflict-affected community. Findings from humanitarian field studies indicate that persons with disabilities are often hidden in shelters, overlooked during needs assessments, and rarely consulted in the design of humanitarian programs. This reduces their access to services and assistance, and increases their risk to a variety of protection concerns, including violence, abuse and exploitation (Buscher and Pearce 2014; Pearce 2015a; Smith-Khan et al. 2015).
Research in non-humanitarian settings underscores the fact that violence is pervasive in the lives of persons with disabilities, and that the prevalence of sexual abuse is higher for adolescents with disabilities (WHO and World Bank 2011). A Lancet systematic review and meta-analysis of studies from high income countries found that children with disabilities were three to four times more likely to experience all forms of violence than their non-disabled peers, and three times more likely to experience sexual violence (Jones et al. 2012).
Studies have also called attention to the unique vulnerability faced by adolescent girls with disabilities, given not only their disability but also their age and the gender norms and stereotypes in society. Surveys of adults with disabilities in Ethiopia, Senegal, Uganda, and Zambia found that all respondents had experienced some form of sexual violence as children: 37 percent of respondents reported being raped; more than 90 percent reported that sexual violence occurred when they were between 10 and 17 years of age; and girls were more likely than boys to repeatedly experience such violence (ACPF 2010).
While comparable surveys in humanitarian settings are lacking, a growing body of literature recognizes the disproportionate impact that crisis and conflict have on women with disabilities, including those acquiring new impairments from injuries or poor health services (Browne n.d.; Human Rights Council 2012; Ortoleva and Lewis 2012). Global guidelines also acknowledge that adolescent girls and persons with disabilities are at heightened risk of gender-based violence in humanitarian contexts, and call upon humanitarian actors to make girls’ programs that focus on safe spaces, network strengthening, and mentoring accessible to girls with disabilities (IASC 2015).
Field research on violence against women and girls with disabilities in humanitarian settings is still very limited (Human Rights Watch 2010; Inclusive Friends 2015; Pearce 2015b) and such studies rarely focus on or explore the lived experiences, unique risks, and the specific needs and capacities of adolescent girls. Furthermore, we could find no studies that document effective strategies to promote the protection and empowerment of adolescent girls with disabilities, and girls living in households with persons with disabilities, in these contexts.
Theories of Intersectionality: Implications for Humanitarian Settings
Theories of intersectionality have served as a valuable framework for analyzing marginalization, exclusion, and oppression experienced by women and girls with disabilities. These theories recognize that while the pervasive effects of gender inequality affect all women, other factors including ethnicity and race, class, religion, age, sexual orientation, and disability also contribute to multiple layers of discrimination (Moodley and Graham 2015; Erevelles and Minear 2010; Nguyen and Mitchell 2014). Intersectional analysis helps us to better understand the multiple identities of adolescent girls, including both inter-gender and intra-gender inequality and discrimination (Frohmader and Ortoleva 2013), which may uniquely shape their status and power in relationships, households, and communities.
The Intersection of Age and Gender
As children, both girls and boys are more vulnerable than adults to various human rights abuses. Because of multiple cultural and developmental obstacles linked to their young age, they lack the power, communication skills, or level of maturity to claim their rights or to avoid violations against their rights. Moreover, being young and female is associated with a unique set of risks, including domestic violence, incest, rape, trafficking, forced prostitution, child marriage, dowry-related violence, and female genital mutilation (Todres 2004).
Gender stereotypes based on discriminatory social and cultural norms and practices are introduced early in a child’s life, and uniquely shape the lives of girls during adolescence (Perisic et al. 2012). Compared with boys, girls’ experiences during adolescence are characterized by greater restriction of movement, limitations in opportunities, and prohibitions on activities, all of which are based on perceptions of safety (Da Silva 2012). In settings where humanitarians work, societies often perceive adolescent girls as “symbols of purity” (Robles 2014: 15). Such social constructs establish rigid expectations for them and condone harmful consequences for those who attempt to deviate from these expectations. In most countries, girls’ emerging sexuality during adolescence is a source of anxiety for parents, who in turn constrain their mobility and agency as a perceived protective measure (Plan International 2013; Robles 2014). Hence, “what girls represent—not who they are,” (Robles 2014: 15) has significant implications for their social space and access to opportunities, disadvantaging them in comparison to male peers in family roles and divisions of labor, as well as in access to schooling, health information, peer networks, economic opportunities, and other resources (Paik 2014).
The Intersection of Age, Gender, and Disability
Adolescent girls’ marginalization is further compounded when disability intersects with their identity. Social norms related to disability are built around the stigmatization of people who look or behave in a way that is perceived as different, and misconceptions about the capacity of such individuals to make their own decisions and to contribute to communities (Foster and Sandel 2010). Historically, the medical and charitable models of disability see it as a medical problem that should be cured and persons with disabilities as individuals who must be cared for in order to protect them (Pearce 2014). These perceptions may seem to “stem from a well-intentioned, albeit misguided pursuit of protecting” (Foster and Sandel 2010: 180) people with disabilities, but are also grounded in the “historical contexts and structural conditions” (Erevelles and Minear 2010: 131) within which identity categories evolve and intersect. The result is that girls with disabilities are even further marginalized and hidden from the wider community, thus affecting their power and status in relationships, households and the community, and their access to the same opportunities as other girls.
Whereas girls without disabilities are perceived as “symbols of purity” (Robles 2014: 15), girls with disabilities are perceived largely as asexual and undesirable (Foster and Sandel 2010). This perception dramatically reduces the self-esteem of girls with disabilities, and persists long into adulthood (Plummer and Findley 2012). The stigma attached to the sexuality of persons with disabilities reduces access to both formal and informal networks that confer protective skills and knowledge about sex, violence, and relationships throughout adolescence and into adulthood (Addlakha 2007; Hanass-Hancock 2009), and increases the vulnerability of women and girls with disabilities to coercive sexual practices (Peta et al. 2015).
In non-humanitarian contexts, girls with disabilities are exposed to violence that carries both disability- and gender-related dimensions that may be inconspicuous and even condoned by a wide range of actors. Such violations include forced or coerced sterilization (Human Rights Watch et al. 2011); and being refused assistance with personal hygiene from caregivers and assistants, who may also withhold assistive devices that these girls need for mobility and/or communication as part of attempts to control the individual (Human Rights Council, 2012). Girls with disabilities are exposed to a wide range of perpetrators of violence, including intimate partners, family members, caregivers and assistants, health professionals and service providers, all with varying power dynamics and complexity (Van Der Heijden 2014).
Disability also has an impact at household levels. Studies in development contexts show that persons with disabilities and their families are more likely to experience poverty than those without disabilities. They may experience economic deprivation because of reduced income generating capacity, additional needs, and expenses related to their disability, and increased care-giving responsibilities within households (Palmer 2011). Similarly, poverty pushes adolescent girls into adult roles and responsibilities (Perisic et al. 2012), including care-giving for persons with disabilities in a household. Adolescent girls adopting care-giving roles for persons with disabilities may also be excluded from community activities and development opportunities.
The Intersection of Age, Gender, and Disability in Humanitarian Contexts
While the intersection of age, gender, and disability has been documented by disability and feminist theorists (Hughes et al. 2005; Watson et al. 2004), the implications for adolescent girls in humanitarian contexts remains largely undocumented. Similarly, there are well-recognized gaps in the intersection between disability and migrant studies. As Pisani and Grech put it, “[M]igration theory grows without the disabled person, disability studies without the migrant, and practice without the disabled migrant” (2015:421). Emerging, albeit limited, discourse on disability in humanitarian settings rarely explores the intersection of age and gender within these wider theories.
Research Methodology
WRC field research seeks to fill knowledge gaps related to the intersection between and among age, gender, and disability in humanitarian settings while concurrently identifying the implications for both the protection and empowerment of adolescent girls.
The WRC puts girls at the center of research, working with them as partners to identify protection concerns and risks, as well as to explore their ideas for change. Operational and participatory research is used to build bridges between the girls, their communities and humanitarian actors, strengthening their capacity and creating space for the girls to have voice on issues that affect them (WRC 2014).
In this report we draw on three WRC research projects involving adolescent girls with and without disabilities: the Protecting and Empowering Displaced Adolescent Girls Initiative, which, since 2011, has been contributing to the knowledge base on strategies for designing and implementing programs for adolescent girls in humanitarian settings (Paik 2014); the Adolescent Girls in Emergencies project, which, since 2013, has been documenting how humanitarian actors across sectors include adolescent girls in emergency response (Robles 2014); and Disability Inclusion in Gender-based Violence Programming in Humanitarian Settings, a partnership project with the International Rescue Committee, conducted from 2012 to 2015, to strengthen the evidence base on effective strategies for disability inclusion in gender-based violence activities among conflict-affected populations (Pearce 2015b).2
Desk Research and Key Informant Interviews
Across the three projects, desk-based research and key informant interviews were undertaken to identify gaps, opportunities, and positive practices to strengthen humanitarian programs. Key informants included humanitarian actors, identified through operational partners and snowball sampling. Desk-based research drew on both peer reviewed and grey literature located through online databases, and humanitarian and development information portals, as well as organizational assessments and evaluations conducted by in-country partner organizations.
Field Assessments in Humanitarian Settings
Field assessments included age and sex disaggregated focus group discussions with participatory activities, and semi-structured interviews to reach girls and their caregivers who may be isolated in their homes. Across the three projects, assessments have been conducted in conflict-affected communities in South Sudan, Ethiopia, Burundi, Tanzania, Uganda, Jordan, Turkey, Egypt, Iraq, and the Northern Caucasus in the Russian Federation, involving over 430 girls, of whom approximately 14 percent had disabilities, and another 550 community members, including parents and caregivers of girls with disabilities. Girls with and without disabilities and their caregivers were identified through operational partners, including UN agencies, international non-governmental organizations, and community-based organizations.
Piloting and Evaluating Strategies
Finally, the WRC worked with implementing partners to pilot and evaluate strategies which foster the participation of girls with and without disabilities in humanitarian programs. “Stories of Change” and photo elicitation were used as media for girls to share with service providers success stories, positive practices, ongoing challenges, and priorities for future activities (Davies and Dart 2005; Pearce 2015b).
The WRC conducts research in accordance with the Minimum Standards for Consulting with Children developed by the Inter-Agency Working Group on Children’s Participation (IAWGCP 2007). The principles of protection mainstreaming are also used to undertake a risk analysis and to plan appropriate mitigation strategies with humanitarian partners and communities involved in the research (Global Protection Cluster 2015).
Findings: Adolescent Girls and Disability in Humanitarian Contexts
Conflict and displacement exacerbate and heighten the discrimination that adolescent girls already face in times of peace (IASC 2015; Paik 2014; Robles 2014). This affects girls with disabilities and girls who live in households of persons with disabilities (Pearce 2015b). WRC research has identified a number of factors that are unique to humanitarian crisis and displacement, and that influence the lived experience of adolescent girls with disabilities and those affected by disability in these contexts.
First, conflict and crisis creates an environment in which individuals manipulate harmful social norms, resulting in increased power and dominance over adolescent girls and greater risk of violence (Robles 2014). Adolescent girls with disabilities are perceived to be more vulnerable to exploitation in these contexts since perpetrators take advantage of their lack of knowledge about sex, violence, and relationships, their extreme isolation, and their communication limitations (Pearce 2015b). Girls with and without disabilities, caregivers and humanitarian actors also reported that resource limitations in refugee settings, where there are already reduced income generating rights and opportunities, further increase the risk of exploitation and abuse of girls, particularly for those with intellectual disabilities (Pearce 2015b).
Displacement may lead individuals and families to live in temporary housing in new communities, sharing houses and even individual rooms within other households. As a Syrian mother describes, “We are in one house with five families and because my daughter is different, the other families don’t accept her.” Families of girls with disabilities report that this increases their vulnerability to all forms of violence, perpetrated by strangers as well as people they know (Pearce 2015b). The extreme stress experienced by families during conflict and displacement can also create environments in which violence is more likely to occur within the home, placing girls with disabilities who are dependent on other family members at greater risk.
In refugee camps in Ethiopia, caregivers also raised concerns about the privacy and dignity of girls with profound disabilities who require assistance with all daily care inside the home, including washing and toileting. These issues become more prominent as a girl reaches adolescence and starts menstruating, and in displacement contexts where homes and shelters may be over-crowded and offer little privacy for this type of support or assistance.
Second, both formal and informal systems that protect against violence may be weakened or destroyed during a crisis, resulting in higher rates of violence and impunity for perpetrators (Robles 2014). Separation of families and neighbors and the weakening of community support structures have a significant impact on girls with disabilities, reducing their access to information and services, and increasing their risk of violence. Caregivers of girls with disabilities reported that this was particularly relevant when they are newly displaced since individuals and families have not yet established trusting relationships with others or rebuilt their support systems in the host community (Pearce 2015b). “Here we are surrounded by people from different towns,” shares a the female caregiver living in a refugee camp in Jordan. “If something happened to my neighbor, I wouldn’t care about them …. Men take advantage because [girls with disabilities] are weak, especially here.”
Girls with disabilities described feeling unsafe everywhere—at home, in public, and even at school (Pearce 2015b). They reported having fewer people whom they trust because of the breakdown of protective peer networks. “They may be your neighbor, but they will go and tell everyone,” says a girl with disabilities living in a refugee camp in Burundi. This reduces their access to informal information networks on safety, gender-based violence, and relationships, and makes them less likely to seek assistance for, or to share with other experiences of, violence and abuse.
In many displacement contexts where access to justice, services, and assistance for gender-based violence is already limited (Buscher 2014), negative attitudes relating to disability further reduces access to support for survivors with disabilities. Participants in focus group discussions and interviews also reported that families, communities, and even service providers “think they are crazy and don’t believe them,” discrediting reports of violence from girls with intellectual or mental disabilities (Pearce 2015b).
Third, after community-based protection mechanisms break down, families may resort to negative coping strategies, which they believe will protect adolescent girls with disabilities from violence, abuse, and exploitation. The most common strategy identified in WRC research in humanitarian contexts is locking girls with disabilities in the home or physically restraining girls so they cannot go outside. Girls with intellectual and mental disabilities who exhibit behaviors that are not socially accepted—such as showing physical affection towards others or removing parts of their clothing—are particularly vulnerable to being locked up or physically restrained (Pearce 2015b). This confinement, however, reinforces the extreme isolation of girls with disabilities, constricts their access to opportunities and services in the community, ultimately exacerbating their long-term vulnerability to violence (Human Rights Council 2012).
Fourth, in displacement settings adolescent girls may be forced to assume additional roles and responsibilities relating to household chores and caring for siblings, as adult men and women become more focused on securing work, food, and shelter (Robles 2014). This has a greater impact on adolescent girls who live in households with individuals with disabilities, particularly if the head-of-household has acquired a new disability. In these families, adolescent girls may assume the role of primary caregiver, increasing their isolation from protective peer networks, restricting their time, and reducing their access to education. Adolescent girls may also be called upon to assist in income generation, exposing them to exploitative or unsafe work. A refugee woman with a physical disability said, “My daughter has become a prostitute. If I could get some assistance, then our lives would be better.”
Finally, humanitarian actors do not necessarily consider the social factors that shape and contribute to the vulnerability of adolescent girls with disabilities (Pearce 2015b). Interviews with humanitarian actors demonstrate that while they tend to respond to the disability-specific needs of girls with disabilities, and refer them for health, rehabilitation, and the provision of aids and devices, there is a gap in recognizing and responding to other factors that are related to their age, and gender. These factors might include being out of school, living in substandard shelter, being married or having a child, or having little contact with other girls of the same age. A gender-based violence community mobiliser shared, “I thought that I couldn’t be helpful to certain persons with disabilities because I am not a doctor. I couldn’t make their condition better, I couldn’t heal them.”I remember hearing conversations when I was [in the hospital]. They thought I was unconscious, but I could hear them talking, saying that I was a ‘lost cause’ and that it was not worth trying to save my life. I used to think about this often and it made me very upset.
Girls with disabilities are therefore often excluded from girls’ programming because of the perceptions—and misperceptions—of staff, communities, and families alike, about their identity and capacity to participate with others. Discrimination in access to programs and services is further complicated by a failure to accommodate the removal of environmental and communication barriers so that girls with different types of impairments can participate and access the same information and opportunities as others.
In conclusion, these findings highlight the interplay between and among individual, family, community, and structural factors, and how age, gender, and disability affect girls in conflict or displacement settings. This has implications for girls’ vulnerability to violence, their access to services and programs, and how humanitarian actors across all sectors set out to achieve their goals and objectives (Robles 2014).
Recommendations for Inclusive Adolescent Girls Programming in Humanitarian Settings
Pilot actions in humanitarian settings have identified that while displacement exacerbates risks, it also presents an opportunity to identify girls who might otherwise have remained invisible, and boys and men, as well as those with and without disabilities, who can help to transform social norms around both gender and disability (Paik 2014; Pearce 2015b).
Three core programming models are being increasingly used by humanitarian actors to protect and empower adolescent girls in humanitarian contexts. “Girl-centered program design” seeks to involve girls in all stages of program decision-making—“from identifying which girls to target, when and why, to measuring results at the level of the girl” (Bruce 2012: n.p.)—and, as Bruce goes on to point out, has demonstrated success in reducing risks for disadvantaged girls in Ethiopia, Guatemala, Kenya, and Uganda. Asset-based approaches are also increasingly adopted; these focus on developing the key skills and resources—human, social, financial, and physical—that girls need to navigate adolescence successfully and move into healthy, productive adulthood (Population Council 2005). Finally, safe spaces, which provide a platform for girl-centered programming, skills development, and social networking, have been used in refugee settings in Ethiopia, Tanzania, and Uganda (Paik 2014), and have emerged as a key strategy in the protection and empowerment of girls affected by the Syrian crisis (UNFPA 2015).
The following principles for humanitarian actors are drawn from positive practices identified in WRC field research, and seek to foster positive power dynamics and opportunities for girls with disabilities in adolescent girls programming, mitigating their risk of violence, abuse and exploitation.3
Principle 1: Prioritize the Right of Girls with Disabilities to Participation and Inclusion
Humanitarian actors often fail to recognize the diversity of the population they serve, including the different risks faced by adolescent girls with different types of disabilities, and girls living in households with persons with disabilities. The inclusion of girls with disabilities in adolescent girls’ programming is critical to reducing their risk of gender-based violence and should be a core part of such programming, not something thought to be special or separate. As an adolescent girl with disabilities from the Northern Caucasus mentioned, “When I come to the event and I see there are persons with disabilities, I feel like I am not alone. And when I see other [non-disabled] people there, I feel equal.”
Principle 2: See the Girl First
While girls with disabilities have specific needs relating to their disability, WRC research has identified that the age and gender components of a girl’s identity are more often overlooked in humanitarian contexts. This has important implications for recognizing and responding to gender-based violence risks, but also for their inclusion in girls’ activities in humanitarian settings. Girls with disabilities have indicated that they identify first as daughters, sisters and friends, and want to be included in the same activities as their peers. Bolia, an adolescent girl with disabilities living in a refugee camp in Burundi, said:
We want to learn things, we want to go to school, we want to make friends, and we want to be productive. Someday, some of us want to be wives and mothers. But people forget about girls with disabilities. They forget we have goals and dreams.
Principle 3: Do Not Make Assumptions
Humanitarian actors in their adoption of a medical or charitable model of disability often make assumptions about what girls with disabilities can and cannot do, or what activities would be most suitable for them. As such, girls with disabilities are not given the same opportunities as their non-disabled peers. Many girls with disabilities involved in WRC field research reported that the most important changes for them resulted from humanitarian actors consulting with them, exploring their interests, and then providing them with the same opportunities as others. As Sifa, a 16-year-old refugee living in Burundi put it, “I can work hard and I can prove that despite what they said in the hospital in the Congo, I am not ‘worthless.’ Instead, I am a girl with a lot to share and to offer.”
Principle 4: Identify and Value All Contributions
Similarly, WRC research findings demonstrate that humanitarian actors and other community members will often define the standards for what is seen to be effective participation. Participation will, however, look different for every individual, and will vary according to personal preferences, the type of activity, and how familiar an individual is with program staff and peers. Hence, it is important to avoid setting rigid standards for what counts as participation, and to involve individuals in defining what this means for them. Everyone has something to contribute—this may be a picture, a gesture or a detailed discussion, all of which can be recognized and valued by humanitarian actors in their work. Such recognition can also shape the way others, including parents and members of the wider community, view girls with disabilities. As one mother enthused, “At these events, parents were standing aside and our children were at the front and the officials were paying attention to them … I was really proud, and I was thinking, is it really my daughter?”
Principle 5: Work with Families and Caregivers
Since the intersection of age, gender, and disability affects not only individuals, but also households, it is critical that humanitarian actors work with families and caregivers of persons with disabilities. They should seek to understand the concerns, priorities, and goals of girls with disabilities, but also girls who live with persons with disabilities. It is especially important to engage caregivers of girls with more profound disabilities. By engaging wider family units, the humanitarian community can both support and strengthen healthy relationships and balanced power dynamics between and among caregivers, girls with disabilities, and other family members. As an Ethiopian mother of a 14-year-old girl with intellectual disabilities said,
My daughter is growing up. She is getting bigger, so taking care of her can be challenging. But we do it together, my oldest daughter and me. … She loves to be outside and to see things and greet people … I know she enjoys this, so I try hard to take her out.
Conclusion
Discrimination and disadvantage relating to age, gender, and disability intersect in unique and devastating ways in situations of crisis and conflict, increasing the risk of gender-based violence against girls with disabilities and those living with persons with disabilities. Adolescent girls’ programming in these contexts provides an opportunity to identify girls who might otherwise have remained invisible, and other mentors and leaders who can help to transform social norms around age, gender, and disability. The inclusion of girls with disabilities in adolescent girls’ programming is critical to reducing their risk of gender-based violence and should be a core component and not something separate or viewed as special.
Acknowledgments
The authors acknowledge and thank the operational partners of the Women’s Refugee Commission who supported and contributed to this research on adolescent girls in humanitarian settings, as well as Dale Buscher and Boram Lee for their review and feedback on this report.
Notes
There is limited disaggregated data on displaced girls between the ages of 10 to 19 years (Robles 2014), but global estimates that 18 percent of the world’s population are adolescents, of which half will be girls (UNICEF 2011), suggest this number.
See Paik (2014), Robles (2014) and Pearce (2015b) for reports from each of these projects, which include reference to the operational partners involved in them, and to the tools and resources developed and piloted with operational partners in humanitarian contexts.
For more detailed principles and guidelines on Including Adolescent Girls with Disabilities in Humanitarian Programs, see https://womensrefugeecommission.org/programs/disabilities/research-and-resources/1252-girls-disabilities-2015
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