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#WhatWomenWant

Sally Nyakanyanga, Zimbabwe

HIV/AIDS programming should include the needs of women and girls with disabilities.

At 14, Chipo Moyo found herself having menstrual periods twice a month, it confused and scared her at the same time. She decided to go to the nearest clinic on her own, and was tongue tied when the nurse revealed that she had a sexually transmitted disease, despite not having had sex in her life. 

“The nurse shouted at me, this confused me more and to make it worse I could not tell anyone about my ordeal. The bleeding continued and I found myself avoiding going to the clinic because of the attitude of the health staff towards my problem,” says Moyo.

It was after Moyo had gone to the Epilepsy Support Foundation of Zimbabwe gathering that she realized that anti-epileptic drugs can cause that effect. Moyo was diagnosed with epilepsy at the age of 11 and has been taking anti-epileptic-drugs ever since. Her predicament was solved when the doctor at the foundation gave her medication that normalized her menstrual cycle. 

For adolescent girls and young women with disabilities in Zimbabwe, sexual and reproductive health rights are a privilege. Health services facilities in Zimbabwe are under-funded and ill-equipped. The forgotten tribe – People with Disabilities study highlighted that accessibility is a problem, particularly for those with reduced mobility or in wheelchairs, and those with visual and hearing impairments. Communication problems between health care staff and patients/clients are common – the availability of information in Braille or sign language, for example, is rare. 

Vanhu vanoti tiri vanhu vaMwari (People call us children of God), as our sexuality is questioned,” says Rejoice Timire, Director for the Disabled Women Support Organisation (DWSO) in Zimbabwe. 

The Disability Scoping Study – Disability issues in Zimbabwe report noted that the sexuality of people with disabilities is poorly understood and often not recognized or discussed by society and family members, and therefore people with disabilities are not commonly regarded as a community that is vulnerable to HIV or affected by AIDS.

Nyasha Maseruka, a physically challenged young woman and #WhatWomenWhat working group member noted that there are a lot of misconceptions around women and disability. “This has hindered women with disabilities from getting the sexual and reproductive health services which addresses their needs,” she says. 

According to UNICEF, Zimbabwe is one of the five countries hardest hit by HIV/AIDS globally with an estimated 1,102, 864 million people infected. Further, 70 percent occupancy in health facilities is attributed to HIV/AIDS related illnesses, with 343, 000 adults in need of Anti- Retroviral Therapy (ART). UNAIDS has indicated that 17 million children have lost one or both parents due to HIV/AIDS and 90 percent of these children live in sub-Saharan Africa. In addition, 3.4 million children under the age of 15 are living with HIV. 

For many girls, as they become young women they acquire HIV at higher rates than their male counterparts by the time they are 23 years old. HIV prevalence stands at 11 percent for men and 22 percent for women. And no statistics is known of how many persons with disabilities are affected with HIV/AIDS resulting in their continued exclusion.

Speaking of children born and infected with HIV, it is pertinent that the correct channels and procedures are used when disclosing HIV status to these adolescents’ girls and young women. Significant issues remain with finding the right time for a guardian to divulge to the child their HIV status. 

For 14 year old Tanyaradzwa Sibanda (not her real name), being on ART has not been easy, as other peers ridicule her as she takes her medication during classes, causing her to isolate herself from them. This has become a double tragedy, as she has to grapple discrimination associated with having a disability and an incurable disease. 

“At some point I stopped taking ART drugs to stop the discrimination, but it continued,” says Sibanda. Despite her HIV status and what has happened in her life, Sibanda, like all people, deserve respect and to be treated with dignity. Discrimination can cause children to lose their self-esteem and confidence affecting their performance at school. 

Therefore, no one can say the experiences of these children better than the people facing them. That’s where the #WhatWomenWant campaign comes in. #WhatWomenWant is a global social media movement started by the ATHENA Network and driven by the voices of young women. It’s a platform for adolescent girls and young women with different backgrounds to share their experiences, gain recognition for the issues they face, and demand action from their leaders. 

WhatWomenWant is a tool to meet young people where they are and make space for them to advocate for their own health and rights. It is centered on one very simple principle: that the most affected are the most informed, and that real solutions must come from lived realities. 

Tyler Crone, Co-founder of the ATHENA Network, said responses from the campaign emphasize the need for programs and services that reach marginalized and most vulnerable young women and adolescent girls such as those with disabilities, orphans and those in rural areas. 

The number of girls with disabilities being sexually abused is likely much higher in Zimbabwe according to Disability, HIV/AIDS Trust but unless they become pregnant, those around them may never know they are being abused. “While women and girls with disabilities are more often the victims of violence, they get little or no access to support services and legal assistance aimed at GBV victims. Part of that is due to the fact that research on how GBV affects women with disabilities is fairly new, so there are no reliable figures to measure how widespread the problem is. 

“We need to address Gender- Based Violence (GBV) in ways that go beyond the police; i.e. GBV education and services need to be linked to existing HIV, health and school- based programs and should be disability friendly,” says Crone. 

Further, laws and policies should address and eliminate gender inequality and harmful cultural norms in our communities and society at large. Adolescent girls and young women with disabilities are sexual beings with needs and desires that must be addressed through comprehensive programming. We need empowerment initiatives that build young women’s education, health literacy, and economic participation and that employ role models and mentorship opportunities. Comprehensive sexuality education both in and out of school settings, especially local programming that can reach youth in rural areas, is essential to giving young people the knowledge and information that will help them make informed decisions over their lives. . 

The WhatWomenWant campaign aims to connect young women with policy and decision makers in their country to advocate for these issues. It has made space for adolescent girls and young women to translate their voices into action through multi-platform consultations, a blog series and a photo campaign using social media channels and tools they are comfortable with. Adolescent girls and young women living with disabilities in Zimbabwe – have spoken. They want to be included in the design of policies and programs that most impact their lives. 

As for young women with disabilities, they need to continue fighting and penetrating these spaces for inclusion to happen. In turn policy makers and development organization should begin to fill the gaps and ensure the needs of the disabled are prioritized. No one should be left behind.