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Redefining the norm and challenging the status quo: Young women rearranging the discussion table

Blog by Maximina Jokonya

“The voices of young women matter. Any HIV
prevention conference and other decision making platform has a duty and an
obligation to ensure our presence, our inclusion and our leadership”, said
Audrey Nosenga, a young woman who was attending the HIV R4P conference as part
of the Young Women’s Leadership Initiative by ATHENA.

According to,  an estimated 740,000 women were living with
HIV in Zimbabwe in 2017. Among young women, HIV prevalence increases with age,
with 2.7% of women aged 15-17 living with HIV, increasing to 13.9% of women age
23-24.  This data shows why it is
important that we  involve young women
and make sure that their voices, views and priorities are included and their
needs centered. Young women should have access to spaces and opportunities to share
their stories and priorities  on how they
think the world can end HIV.

As young women, our main ask is for those who
are involved in HIV programming and implementation, including researchers, to
see the importance of our presence at the discussion table. During the HIV R4P
conference, we heard a lot about young women but too little from young women.
It is of paramount importance to include the faces behind the statistics,
graphs and colorful pie charts. If we are to reach the 90/90/90 targets and
the goal of ending AIDS by 2030, we need to create spaces for young women.

During the HIV R4P conference, the Young Women’s
Leadership Initiative took over the Advocates’ Corner to make our voices heard
to the researchers, policy and decision makers of the conference. We did this
through raising the Visible Panty Line, which symbolises the things that we as
women are told to keep hidden, to be quiet about and to be ashamed of. The
hotel which was chosen to host this HIV prevention conference forced us to take
the panty line down; telling us that our advocacy was offensive. Therefore, we
are saying: if young women’s voices are not heard and their views prioritised,
then for whom are we coming up with these great innovations, studies and HIV

All we are saying is, we don’t want any high
position, nor are interested in a seat at the table, what we want is to
redefine the norm and challenge the status quo. We want to change the same
cloth and utensils we have been seeing on the table with new and more choices
that are meant for us. When we are planning for conferences, let’s have spaces
for young women to share their ideas, opportunities to speak on panels,
sessions and poster presentations. It is now the time to move away from the data
or statistics-centered conference approach to a more conversational, human
centered approach!  The voices and
experiences and leadership of young women is necessary if we are to end this
epidemic and fulfill the rights, choices and agency of everyone living with or
vulnerable to acquiring HIV.

Upholding SRHR for women in their diversity; what is the intersection between GBV, HIV/AIDS , SRHR and Disability?

During the #16DaysOfActivism, it is critical to recognize the profound
ways in which gender based violence affects women and girls. Beyond that, it is
also important to amplify the experiences of women and girls in their diversity
and understand that women are affected differently depending on their
experiences and situations. On the international day of persons with
disabilities which falls within the #16DaysOfactivism, ATHENA Initiative as part of an intensive #16DaysOfActivism digital engagement strategy had a chat with Sarah Musau. Sara Musau is the Co-Founder & Programs Director of Gifted Community Centre on the unique experiences and needs of women and
girls with disabilities in relation to GBV and priorities that should inform
programming and policies. This was in addition to co-hosting a twitter chat to create space for a dedicated online conversation that brings in perspectives and contribution from other actors and young women

We are in the
#16DaysOfActivism, what are the unique ways in which women and girls with
disabilities experience #GBV and especially in the world of work?

It is unfortunate that women and girls with disabilities experience
gender based violence yet they rarely report to the relevant authorities. Due
to the vulnerability of women with disabilities by the virtue of them being
disabled, they are at a higher risk of being sexually harassed and
unfortunately this happens from their assistants and workmates/bosses. Since
they would like to be helped (case in point, a woman using a wheelchair will
need assistance to be helped to move around/ a person with visual impaired will
need a sighted guide/ a hearing impaired will need a sign language interpreter etc)
this kind of dependency most are times is abused. Those you would believe
should be of help are the ones abusing you. In addition, this vulnerability and
dependency has been used quite a lot to emotionally abuse girls/women with
disabilities. Unfortunately it becomes hard to report such cases as they are
dependent on their abusers to live (as most believe).

Furthermore, most workplaces are inaccessible, and therefore the need to
be supported to access some of these amenities such as toilets (where there are
stairs and one needs to be lifted), their right to privacy is violated where
many times they are touched inappropriately, and this continues to such an
extent that the perpetrators deem it right. Social stereotypes, and myths about
women/girls with disabilities such as sleeping with a girl with disability
cures AIDS has placed women with disabilities at very high risk as many would
to experiment with them. This in turn creates a lot of insecurities,
stigma, and many times depression to women with disabilities, which in the long
run affects their work performance leading to losses of their jobs. 

What are the gaps and key
barriers in the GBV response for women and girls with disabilities?

For women
with disabilities, their disabilities are seen first before recognition that
they are first women . This has been a big impediment to GBV response where
women with disabilities are concerned. F
to the relevant authorities, to the duty bearers, to other women. It is worth
to note that there are many projects running in Kenya  and beyond focused on women and GBV,
but unfortunate that, hardly do they involve women
with disabilities, and as much as the GBV awareness creation is made through
mainstream media and other mediums, a big number of women with disabilities are
illiterate and also cannot access these mediums.  Women and girls with disabilities are a
category of people that has for decades been excluded and overlooked in GBV, HIV/AIDS
response and Sexual and Reproductive Health and Rights Programming. This
exclusion has exacerbated and normalized the barriers they face to accessing information,
services, treatment, care and support. Poverty, increased vulnerability to
sexual violence and abuse, limited access to education and health care, and
lack of information and resources are some of the major barriers women with
disabilities are battling with.  In
addition, lack of accurate data on the number of women with disabilities in
Kenya is another challenge since for our rights to be fully respected,
protected and provided, we must count. Some of the structural challenges that
compound the situation is the fact that GBV response service providers lack
knowledge about disability, are misinformed and have negative attitudes towards
women with disabilities which limit them even to seek their services. This is
in addition to already  inaccessible
facilities, lack sign language interpreters, and information provided not in
formats accessible such as Braille or audio.

What are the key enablers to young women with
disabilities in accessing HIV/SRHR services?

Women with
disabilities need to first be recognized as women. The terminologies used to
describe them matter a lot, and so is the need to belong. Women with
disabilities want to be involved, and included in the decision making table to
contribute to the policies that concern their bodies/lives. They would be able
to access SRHR when the facilities are accessible, the service providers are
well trained on disability issues, when the society accepts them as they are
and the need to recognize and respect diversity.  In addition, they need information, they need
education, they need empowerment, they need independence, and they want their
dignity upheld to be able to gain the courage and serenity to think of seeking
of SRHR/HIV services.

 What does
the end of #GBV mean to you and other young women and girls with disabilities?
What is your top priority for this

It means
being recognized as women who have a right to choose what to do with their bodies,
and their choices/decision respected. It means being included in that decision
making table, and given the microphone to say as it is, and contribute in that
policy. It means other women without a disability recognizing, respecting and
involving women with disabilities in their GBV based programs. It means an end
to dependency which in turn creates a sense of independence and choice to live
fully. It means being able to work with others and their spaces respected, it
means no more threats from caregivers/assistants. It means living a holistic
life. My top priority is to ensure inclusion and participation at the decision
making tables, where women with disabilities say it as it is and their voices
amplified. We are already doing this at Gifted Community Centre, where we give
them a chance to be speakers during our Live Twitter Chats, and other offline

 What role
can everyone play to accelerate progressing ending GBV for women and girls with
disabilities? and why
should our efforts to eliminate gender based address the needs of women and
girls with disabilities?

Everyone can contribute to ending GBV on women and girls with
disabilities by first making the environment accessible to enable women/girls
with disabilities access the facilities/professionals who respond to such
cases. Everyone need to recognize and respect that a woman comes first before
the disability and thus more awareness needed on this, and respecting women
with disabilities despite. Everyone needs to reach out to girls/women with
disabilities at their communities and encourage them to report any case of GBV.
Empower women/girls with disabilities to remove the dependency they have on
their abusers. Celebrate them on whichever milestone they make however small. Give
them a chance to air out their views, do not judge them, let them put a full
stop then take over from there. Unless, we respect, protect, and provide for
the rights of women with disabilities in regards to their bodies/lives, then
sustainable development goals will remain just a song. Everyone matters. Leave
No One Behind.

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.   

Winny Obure

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.   

Lucy Wanjiku


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.