The intersection of gender and disability must be urgently addressed to prevent violence in the context of the Zika epidemic

By: Maddison Hall, Elga Salvador, and Tisa Barrios Wilson

Around 15% of the world’s population is living with some form of disability, and this prevalence is expected to rise in concurrence with the aging of populations and increasing burden of chronic disease.  Existing data consistently demonstrates that individuals with disabilities experience violence at higher rates than individuals without disabilities. Lack of social support, stigma, institutionalization, ignorance, and discrimination all contribute to the risk for violence among people with disabilities; this violence may originate from a number of sources including medical personnel, caregivers, and intimate partners. Experiences of violence can exacerbate the often-ignored health and social disparities people with disabilities already face.

Both disability and gender can put individuals at increased risk of violence, but the intersection of disability and gender-based violence (GBV) has often been overlooked. The prevalence of disability among women is 19.2%, which is higher than the global prevalence of disability (15%). Data analyzing experiences of GBV among people with disabilities is limited, and existing studies have found contradicting results about the prevalence of GBV among people with disabilities. Women with physical and visual disabilities in Spain were found to have much higher rates of GBV than women without disabilities. In Cambodia, women with disabilities are at an increased risk for emotional, physical and sexual violence from family members. Women with disabilities are more likely to experience intimate partner violence than women without disabilities, and their partners are more likely to demonstrate dominant or proprietary behavior. While women with disabilities are more likely to experience violence than women without disabilities in the United States, there is not a significant difference in risk of violence between men and women with disabilities.

Rates of sexual violence are high among people with disabilities, particularly women. The Bureau of Justice Statistics’ National Crime Victimization Survey reported that in the United States from 2011-2015 the rate of rape and sexual assault against people with intellectual disabilities was more than seven times the rate against people without disabilities. Among women with intellectual disabilities, it was about 12 times the rate. Additionally, transgender people with disabilities experience sexual violence at higher rates than transgender people without disabilities.

Even with limited data on the prevalence of GBV among people with disabilities, there is clear evidence that the experiences of people with disabilities in relation to GBV are unique.  Violence against people with disabilities is underreported, since individuals with disabilities face distinct challenges in reporting GBV or accessing services. Service locations or shelters may not be accessible to people with disabilities, legal officials may question the validity of reports from people with disabilities, and people with speech disabilities may face difficulties with communication in the absence of inclusive methods of communication. Further, because caregivers are often the perpetrators of violence against people with disabilities, they may be unwilling or unable to report violence due to fear of retaliation or lack of support.

Under USAID’s Applying Science to Strengthen and Improve Systems (ASSIST) Project, WI-HER and our partners are addressing violence against persons with disabilities in the Latin America and Caribbean region in the context of the Zika epidemic. Since the outbreak in 2016, many children exposed to Zika during their mother’s pregnancy have been born with Congenital Syndrome associated with Zika (CSaZ). CSaZ is a distinct pattern of birth defects including microcephaly which causes the skull to  partially collapsed, decreased brain tissue and brain damage, damage to the back of the eye, congenital contractures, and hypertonia restricting body movements after birth.

Children born with CSaZ are vulnerable to violence throughout their lives. Key informants in El Salvador revealed that, in some cases, families of newborns with CSaZ did not seek treatment for their children. Because of traditional and religious beliefs, these children were considered to be either a “gift of God” or a “punishment of God,” and families sought counsel and treatment from religious leaders instead of health providers. This deprived affected children from opportune health care, early stimulation exercises, and other services critical to their development.

There were also reports that both children with CSaZ and their families had been mistreated by health providers without proper sensitization in Zika, gender, and psycho-emotional support. Some providers considered these children to be hopeless cases and, believing they would soon die, did not offer appropriate care and support. WI-HER and ASSIST staff are helping sensitize health providers about CSaZ and gender to end the stigma and promote access to comprehensive care and support for these children and their families. We strongly believe this is key to create inclusive and respectful environments where children with disabilities, including children with CSaZ, can receive proper care to develop with dignity and free from violence.

While investigating gender issues related with Zika, WI-HER also found that mothers of children with CSaZ experience different forms of violence. In the Dominican Republic and in El Salvador, key informants reported that mothers are often blamed and stigmatized for giving birth to children with disabilities. A lot of these women and girls are abandoned by their male partners and socially marginalized in their communities since the causes of disability are often misunderstood.

“Here, a child with microcephaly was born and the parents were adolescents. The father initially said the infant was his daughter and they were living together. However, later due to the stigma of having a child with disabilities and the pressure of the family, the father refused to claim his child, saying that she could not be his daughter since in his family had no previous cases of disability. Therefore, the girl and her daughter were forced to leave their community” (Key informant, Santiago, Dominican Republic).

While blame and abandonment can be considered forms of violence in themselves, they can also exacerbate financial challenges for children with CSaZ and their mothers. Many mothers of children with CSaZ have to leave their studies or employment to assume full care of their children, which impacts their economic autonomy. Mothers who are abandoned by their partners or lose other social and financial support systems due to blame or stigma, face additional hardships in accessing financial resources and paying medical and other expenses for their Zika-affected children. This economic insecurity, together with marginalization, can expose them to increased risk for additional violence. .

WI-HER strongly believes in the guidelines established by the Convention on the Rights of Persons with Disabilities. In order to prevent and address violence against people with disabilities, it is key to ensure appropriate forms of gender and age-sensitive assistance for them, their families, and caregivers. This includes sensitizing health providers on gender-based violence and the heightened risk of violence for people with disabilities; legislative and political measures that take into consideration the specific vulnerabilities of women, men, girls, boys, and children with disabilities; protection services for people with disabilities responding to gender and age specific needs; and the provision of information and education on how to avoid, recognize, and report instances of exploitation, violence, and abuse.