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.
Adolescent girls and young women’s access to SRHR, and issues of GBV in Kiambiu Kenya
Sexual Gender Based Violence
This issue is still very rampant, and lately on the rise in my community. The cultural belief that men are the providers naturally, gives them more power and control over women. On countless occasions, I have tried to rescue young women from abusive marriages but they would go back. Why? They are dependent on their partners for literally everything, include decisions on whether to have sex or not – in fact most women don’t have an idea what sexual pleasure is at all. It would be ideal to not only empower the women with sexual and reproductive health and rights (SRHR) information and services, but target their partners and friends during sessions on gender-based violence (GBV) and comprehensive sexuality education (CSE). Most men still feel like gender equality and the efforts for young women and adolescent girls (AGYW) to be determined, resilient empowered, AIDS-free, mentored, and safe to achieve their DREAMS is a battle - so they feel insecure.
As an example, in our program we take AGYW for vocational trainings to learn some skills. Most of the target group and their partners are not educated so they have not been exposed as well. One month after starting their courses at the community colleges, many young women begin to change - to dress differently, to practice more self-care, to look good, to start having bigger dreams and voila, the change we have been yearning for! But at some point, they stop going to college and only a handful manage to finish and graduate.
When I engaged them further to understand in depth why this was happening, 90% of those who dropped out indicated that their husbands literally refused, and they can’t go against their will or else they would be beaten up. So instead of improving the situation we end up complicating it. At this point, I cry endlessly in my heart because I can’t seem to convince these young women why this course is more important to them and their family including their children and future. It’s sad. To me, this only means that we may have good intentions and resources to reach out to the AGYW but we must now start thinking on how to engage boys and men in GBV prevention. In fact we should even train community volunteers or champions who will be spearheading campaigns in their community, rather than leaving the job to NGO’s that are funded to do such interventions. Engagement of key community members, including capacity building local leaders and spiritual leaders on GBV, is very important.
I can count at least 20 girls below the age of 18 years in my immediate neighborhood in the ghetto who are either pregnant, with kids and married, or both. The area local administration knows about this. Some of them are beneficiaries of the educational support program, but have re-dropped out of school. Why? The money given is not enough. I think it would be great for DREAMS and other programs to work directly with schools and pay full school fees for the neediest of the needy. If this could be possible, after a year 500 girls have been sponsored fully to attend school and those who are married can be encouraged to go to boarding schools. There could also be a community daycare center for women to drop off their babies when they are leaving for school, vocational courses, work or forums. This will encourage their participation.
In Kenya, perpetrators of violence get their way through the courts by corrupt ways. This discourages AGYW from reporting the so many cases happening because nothing will be done except more ridicule and belittling from the same perpetrators once they are free. Most of us working around AGYW SRHR and GBV are not very conversant with legal issues, and I think to make the situation better, the DREAMS program could partner with legal institutions to pick up, represent and follow up these cases to the end. If they can prosecute even 5 cases that community the knows, it will make a difference and our faith in the justice system will be restored. Or at least train passionate community volunteers on para legal matters and give them some emergency kits to help with telephone airtime and transport whenever they are called upon to rescue, follow up or support [victims of GBV]. I know many who honestly want to help e.g. when a girl has been raped, she must be rushed to the hospital, then police station, then to a safe house, or to see a counselor - all these involves movement from one place to the other and communication – which cost money. Those willing to help hesitate because the truth is they don’t have a penny. So they abandon the case and put it in the hands of the parent of the survivor, who is normally very stressed or confused, and eventually it becomes the mercy of the perpetrator to give some little money for treatment and ‘allowance’, and it ends there. These become examples in the community, and rogue men keep moving from one girl to the next. They must stop this madness. They must be disciplined to know that this is a crime they can’t get away with - which will only be possible if cases are followed up on, the community is educated and girls are taught on healthy choices, all at the same time.
I am a victim of e-violence, cyber bullying, and stalking but there are no laws so far addressing these issues. I remember when I visited the police station to report my case, the policemen were laughing and some said there is no such a thing as e-violence. One who volunteered to help told me to just go back to my husband and beg him to return my passwords because there is no way they could help further. I was like really? This is a private space someone is invading and taking full control over, yet it’s not considered a crime in Kenya? I was furious and frustrated but that was the end of it. You see, a lot of other AGYW who enjoy better living standards have the privilege of owning cell phones and accessing the internet. They might be victims to pedophiles and/or e-violence sooner or later. Maybe we could learn from other countries on how they have dealt with this and what advocacy measures could be taken to push for stronger policies.
Finally, cash transfers are a great idea and very helpful to the beneficiaries. It would be better if the amount is increased (currently they give Ksh.2000 - equivalent to USD20). In most cases, the YW and girls don’t have their own phones or ID, so instead use their parent’s or partner’s, which has turned out to be messy. This results in their needs lacking – especially for things like sanitary towels to help keep them in school during menstruation.
ENGAGE AND SUPPORT.
It was one thing to become an adolescent mother and another to be HIV positive; nothing could have prepared me for what laid ahead. We decided to move in together with my then boyfriend, forced by the circumstances around us. Having just cleared high school, this is pretty normal from my community - to get married and have a baby - it was no shocker in my case, and sadly it’s still a norm till now. I know one girl out of five who finishes high school and right away gets pregnant, or does not make it through high school.
Our communities go ahead and brand us names, we rarely have people to fall back on or run to for advice. We know it is prudent to go for our antenatal clinic, but here the treatment is not any better. You go through discriminatory questions like, why did you decide to get pregnant and what sort of life you will give your baby if not just the virus? You are asked why such a young girl decided to engage in sex and get ‘dirty’? As if all the children who were born positive the last two decades and below disappeared into thin air or got cured! This is how we lose our girls; they opt for unsafe abortions or giving birth at the nearby clinic where they don’t have to disclose their status or get tested. So what happens to the baby? What happens to our adolescent HIV positive mother?
This is why a support group has become a safe haven for this adolescent mother, though they are now a thing of the past in the priorities for funding. Does this promote zero new HIV infections? Does it promote ending adolescent AIDS? Does it promote eMTCT? Does it see the realization of Sustainable Development Goals 3 and 5?
Let’s support what works if we are to achieve the 90.90.90 targets in the HIV response. Support groups work. Community-based organizations can facilitate this smoothly when supported. Engage more adolescent girls and young women leaders at the decision-making tables to tailor what works for us so that it’s sustainable. Meaningfully engage and support us, this is my message to you, in whichever capacity you are in the HIV response.
NO ONE SIZE FITS ALL!
We started going to Kauma about 3 years ago. We had a clear vision; mobilise girls, talk to them about the importance of education and go back to our normal lives. We were three young women passionate about girls’ education, feminism and creating safe spaces for other girls and young women. One thing we were sure about is we wanted to do something.
So we started. With the little we had. We started.
Throughout 3 years Growing Ambitions has evolved to just conducting talks with the girls once a month to an organization that provides so much more. We are reaching out 22 girls and young women in the peri urban area of Kauma, located on the outskirts of Lilongwe the capital city of Malawi.
Our passion to build the capacity of girls and young women from peri- urban areas to take full charge of their lives in all areas is at the center of this organization. When women and girls are given the opportunity, access and resources they need, they make informed decisions and choices that positively impact their own lives and that of future generations. Our focus is on offering mentorship and creating a safe space for girls and young women to interact. We envision a Malawi where girls, regardless of their socio- economic status or past negative experiences, take charge of their lives and thrive!
For the 3 years that Growing Ambitions has been in existence, one thing we’ve learned is that flexibility is key for programs that are working on HIV prevention for AGYW. Young women are diverse, so a once-off kind of program cannot expect to succeed. Organisations working on similar programs need more leg room. From our experience, when we officially launched our organization we had core activities planned, but with time we have had to learn, unlearn at the same time accepting how far we can stretch ourselves. We have moved from conducting monthly mentorship sessions to providing financial support to the girls through provision of scholastic materials, school fees, buying uniforms and even paying for day care services.
Some of the girls who are part of our program have children and simply need someone to take care of the child while they go to school. So we have found ourselves paying for day care services but also moving beyond that and involving the parents and guardians to get them to support the girls and the program as a whole.
Programs and organisations need to adapt. Fast!
It might not be easiest and most practical thing for formal structured organisations but leave some leg room.
No one size fits all when it comes to programs dealing with AGYW on HIV prevention.
Growing Ambition’s example can be modeled and here is a simple list of recommendations from our own personal experience.
1. There is need for a holistic approach when delivering programs; if you cannot do it all- COLLABORATE!
2. Learn from others; know what is working BUT most importantly be willing to bend a little and find what works for your context
3. MONEY! We need long term projects, nothing less than 5 years to see real change and impact on the ground.
4. Most importantly- invest and fund community based and young women led organisations, there is so much we are doing, models that we can scale up and amplify but no one wants to fund us.
5. Involve beneficiaries and all other relevant stakeholders from inception stage
BARRIERS TO HIV PREVENTION FOR ADOLESCENT GIRLS AND YOUNG WOMEN (AGYW) IN MALAWI
A national assessment of the impact of HIV in Malawi, carried out by
the Malawian ministry of Health in 2015-2016, found that HIV prevalence among
adult women (15 years old and above) was 12.8%, compared to 8.2% of Malawian adult
men, which indicates that women are more at risk (Malawi AIDS response, 2015).
The following are some of the barriers to HIV prevention for the AGYW in
Malawi which are leading to high HIV prevalence rates, despite government entities like the National Aids Commission taking a leading role in
Culture- this is especially true for AGYW in rural areas who do not
have access to HIV preventive tools like condoms because the decision must be
made by the husband, who culturally is the head of the family. So for a woman to
get a condom, she has to get consent from him, otherwise she would be considered
as a “prostitute”. And because of that, many AGYW are not exposed to
these tools and services, and don’t talk of sexual issues with our parents who would
otherwise be the best advisors whilst we are growing up. As a result, we live
in darkness and tend to get advice within our peers or media, which most of the
times is inaccurate and misleading hence putting most AGYW at risk of getting
Lack of professionalism amongst health workers- most health care
workers are judgmental. Instead of providing services, they take up the
advisory role more which ends up forcing AGYW to abstain and for the fear of
that, most of the AGYW just engage in unsafe sex hence exposing them to HIV.
Poverty- most of the population in our country is poor but most of us
AGYW want to live a life as if we are rich. We want high standard things
which we do not or can not afford on our own hence “Blessers” (Sugar daddies)
do the needful and in exchange they ask for unprotected sex which we always
give in for the fear of being seen too poor amongst our peers.
Peer pressure and ignorance- Most AGYW fails to make their own
decisions because of either what their role models, friends are doing or what
the majority around them is doing. The fear of being considered cheap amongst