AfNHi youth cohort mentorship team members came together to share the status of disability inclusion In the countries they hail from especially In terms of sexual reproductive health and rights information access. Global research suggests that persons with disabilities face barriers when accessing health care services. Yet, information regarding the nature of these barriers, especially in low-income and middle-income countries is sparse.

Much as there’s no accurate data on disability numbers and figures, it is important to note that sexual reproductive health rights and services is an important context on information and informed choice making that every young person regardless of their disability should have. In as much as today and now we may not have any visible form of disability, it is important to note that each and every one of us is a second away from getting disability as much as we are only focusing on advocacy in general, there’s need to work around Sexual Reproductive Health rights (SRHR)  and HIV infection figures across all youth categories.

In the discussion it was mentioned how in rural South Africa such as Madwaleni , persons with disabilities faced significantly more barriers to accessing health care compared to persons without disabilities. Barriers increased with disability severity and was reduced with increasing level of education, living in a household without disabled members and with age.In the urban cities such as Johannesburg , Gcobisa Madololo informed the team that there are few youths’ friendly facilities that specifically deal with people with disabilities however most facilities are inaccessible for persons with disabilities as they do not have ramps, as well as ill treatments from health providers. This is a major issue that is neglected by advocates and organizations working around SRHR service access and information.

Dr Patrick Sseremba from Uganda mentioned how while undergoing his medical training, he never came across an instance where he interacted with  a person with disability during service provision, not until his private practice. In his current work practice he mentions how challenging it is to offer services to these category as for instance when those below the age of consent come for a service, their parents/guardians and caretakers often fail to relay accurate challenges that these young clients face making it hard to diagnose.In most scenarios of clients with speech and hearing disabilities, he mentions how often the caretakers speak different languages as some fail to communicate in sign language with these persons with disability.

Given the context of medical curriculum of medical students, often these health workers in the end do have the opportunity to study sign language in their curriculum making it hard for them to communicate with their patients with speech and hearing disability when they come for service.

Victoria Quaynor from Ghana submitted with regards to the cost of communication  and how it is considered expensive to communicate with persons with speech and hearing disabilities as it is important to break down the messages to consumable information for these persons as well as have sign language interpreters to relay and bridge the communication gap.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) is a human rights instrument on an international level intended to protect persons with disabilities’ dignity and rights. Eight guiding principles underlie the Convention, of which accessibility is one . Health care needs that are not met and that exacerbate health disparities are experienced disproportionately by persons with disabilities.

This cohort believes that it is important to integrate disability inclusion and sign language interpretation in sexual reproductive health care and rights advocacy especially in our community outreaches and implementation programs if we really are to contribute towards universal access to health care and leave no one behind.

Compiled by ;

Winnie Akidi (Uganda) AfNHi Youth Cohort Mentorship Member

In October, Munashe Mhaka, a Zimbabwean AfNHi youth mentorship cohort member reached out to young people at the University of Zimbabwe and created a WhatsApp group link for them to join. The theme of discussion was “HIV and ME,” and the first discussion was on HIV and AIDS. This aimed to increase young people’s knowledge on the basic facts about HIV and AIDS and to distinguish between the facts and myths of HIV and AIDS, as well as to get rid of any myths that they might have heard about HIV.

The session also aimed to help participants understand the process of HIV testing, to weigh the pros and cons of having an HIV test, and knowing where to get HIV testing services. They discussed HIV Testing and Counselling (HTC); What it is, how it reduces HIV risk, and its benefits. The discussion went on to further focus on the barriers and facilitators to HIV Testing, so as to help participants understand the reasons why adolescent girls and young women go or do not go for HIV testing. This expanded into issues of disclosure and stigma. They looked at issues involved in supporting People Living With HIV (PLHIV) to disclose their status, and the difficulties involved with disclosing someone’s HIV status and how-to better support PLHIV. Participants were left with an understanding of why disclosing one’s HIV status is important and to know the effects of stigma and how they can be overcome. The session was a guide to participants to know the truth about living with HIV and supporting those who are living with HIV.

The expectation was that at the end of the program, the young people would:

1. Be open in discussing HIV and AIDS issues
2. Be able to reflect on their risk to HIV contraction
3. Feel encouraged to go for HIV Testing
4. Encourage others to go for HIV testing
5. Speak out against stigma and discrimination towards people living with HIV
6. Have a deeper understanding of what it means to be living with HIV

The group members managed to link up at the University Sports grounds, and had a physical session discussing SRHR issues.

On the 26th,/September/2022, Winnie Akidi an AfNHi youth mentorship cohort member based in Uganda, hosted a twitter space that brought together four speakers i.e. The president of African Youth and Adolescents Health Network on population and development, the Executive Director of Nile girl’s forum, the BCC Programs manager at Naguru Teenage health and information center as well as a disability rights advocate and communications officer at National Union for Women with Disabilities of Uganda to a holistic round conversation reflecting on the barriers young people face in accessing SRHR services and information.

In this online conversation ,it was revealed that recent studies in Uganda and across the sub-Saharan Africa show how young pep[le are having limited access to contraception services and  how lack of trained personel to address the sexual reproductive health needs of young people and persons with disability at large in health facilities is a big challenge. In her statements she  also mentioned how persons with disabilities face magnitudes of challenges in accessing these services due to stigma and negative attitudes by service providers and medical workers who assume people living with disabilities should be asexual which deficits in perception and knowledge have greatly affected persons with disability and young people’s access to sexual reproductive health care services today.

Having invited key advocates to respond to a question dubbed “REFLECTIVE VOICES ON SRHR ACCESS”, one of the panelists, Charles mentioned how policies have greatly influenced access to SRHR services for young people especially those below 18 years in Uganda. Reflecting on different works done by different members of Civil Society .He further stated how unfriendly policy environments that inform advocates are not available for example the Adolescents Health policy which would be a key guideline for actors to advocate for Sexual Reproductive Health Rights and services isn’t available. He mentioned how these are key documents that would help guide advocates works.as well as guide the health system structures  that do not favor service delivery  in terms of functionality ie, they do not have the capacity to offer these services as most of them do not have key contraception services and the community health workers model would play an important role in relaying guidance of SRHR service access in communities.

Charles also mentioned how gender inequality and patriarchy in society today does not give the girl child an opportunity to negotiate and decide or speak for themselves, thus the growing teenage pregnancy and child marriages associated with social norms and culture that fuel patriarchy. At institutional levels most of the girls and boys do not have the information around SRHR to help them make informed choices.

As a passionate gender and disability expert, Shamim mentioned how the barriers are compounded especially with the covid pandemic, caretakers of persons with disability in reproductive age  still deny them their  SRHR rights without consent where body autonomy is involved. she further mentioned how care takers carry out drastic decisions like abortion and forced sterilization of these person in thought that they incapable of taking care of children since they are disabled. Shamim also mentioned how the physical environments are not friendly and how medical equipment are not designed for examination and labor purposes thus robbing these young women of their dignity.

She mentioned an example of how a person with albinism is discriminated against and asked inappropriate questions like “Are you also white down there”. This has often made them shy away from going to access services as well as negative language from nurses to women with disability on how they were able to climb their marital bed and fail to climb the hospital beds during antenatal checkups.

Thembo, a BCC programs advocate, shared how we can quickly appreciate the translation of knowledge into information for young people and vice versa around behavior change for SRHR information uptake. He mentioned how access to information should ultimately influence behavior of young people stating how we are supposed to translate all information on SRHR into consumable knowledge for the young people to understand and appreciate the information they get. Thembo also mentioned the need to conduct routine surveys on understanding the needs and preferences of young people’s need to consume this information.

Peace from Nile girl’s forum shared how they are using a peer pals model to disseminate age appropriate information on treatment and adherence in refugee settlements in the West Nile region. She also mentioned how they are working with cultural leaders of “Alur kingdom” to champion SRHR issues and support young people, as culture is a pivotal instrument in communities given that communities believe so much in their leaders.

Recommendations;

During this call, to address the disability segregation, it was mentioned the need for continued awareness of communities, medical workers and different institutions on disability and disability rights on how to offer services for young people with disabilities.

There’s a need to be intentional on how to package messaging around SRHR and HIV prevention and awareness. Mentioning how the media needs to be fully engaged in creating awareness.

There is a need for male involvement in promoting SRHR services especially contraception usage and access as it is stereotyped and considered a women’s thing making uptake a challenge.

From the comment section, someone mentioned the need to mend structures that need to be lobbied for and advocated such that an inclusive environment is created in health centers, in this every health center needs to have an adolescent clinic.

In conclusion, from this discussion, different challenges ranging from structural, institutional and perception challenges are key barriers to access of sexual reproductive4 health rights and service information uptake among young people today. And thus the need for tailored implementation programs that best meet the needs and preference of young people in accessing SRHR information  and service as we strengthen our advocacy today.

Compiled by 

Winie Akidi- (Uganda ) AfNHi Youth Cohort member

Heard of the phrase “human-centred design”? Human Centred Design, also known in short as HCD, is an approach to problem solving that focuses on understanding the needs, motivations, and aspirations of people to inform the design of potential solutions.  With empathy as its organising principle, HCD uses a creative and participatory process to generate ideas, develop them into prototypes for testing, and iterate on the result until a solution that best serves the needs of the target users is achieve(Rimjim, HCD Consultant at HCD Exchange). 

Prior to joining  HCD Exchange in 2022 I had some level of understanding of HCD. Notably, in 2020, I participated as an interpreter on a Y-Labs project that engaged girls on SRH, specifically  youth friendly clinics.  Although there are many  HCD methods and tools such as Journey Maps, Role play,Storyboard, card sort just to mention a few. One of the tools used by Y-Labs during the session was Card sort through a focused group discussion.

I was previously unaware that card sorting  was one of the HCD tools, but I thought it was a unique method to involve the youth,especially because it enables the facilitators to include images associated with the particular topics covered during the session. Interesting, I said to myself.

 I didn’t have the opportunity to inquire further about their decision to employ that strategy because I was so ecstatic to have witnessed something novel—that was the twist—that I missed the opportunity.

After a rigorous selection procedure, I was given the uncommon opportunity to join HCD Exchange in 2022. I’ll elaborate on that later, but for now, let’s focus on how it affected my life.

When I joined HCD Exchange, I gained a lot of knowledge about how Human Centered Design can be applied to adolescent sexual and reproductive rights.That was when I understood the different HCD  tools better including the one used by Y-Labs.

You’ll notice that HCD makes it easier and more possible to understand the needs of persons we design  programmes for as development workers and  advocates.

As a young advocate with Africa free of New HIV infections( AfNHi), I had the opportunity to give a presentation where I introduced HCD to other advocates working on SRH. I briefly discussed the definition, tools, and ways they can integrate it in their work.

As a result, my project, SRH Day out, targeted the Shai Osuduko community. Using HCD, we assessed their needs and determined that they required not only reproductive health information but also education support in the form of stationeries. Using the  AfNHi youth mentorship project support, my team and I provided a comprehensive  response to their needs during the project’s implementation;through SRHR  information sharing, provision of stationeries for students, career guidance and mentorship. This way, the people of Shai Osuduko, chiefly, the young people’s needs would be met.

With the use of HCD,advocates are well versed about the various tools available to identify the needs of their target, build solutions that are targeted, and share best practices when necessary. The next time you think of designing any program or solution for SRH, think of HCD to help you in the process.

This is my HCD usage experience; to learn more about HCD, see the HCD Exchange community or the AfNHi social media pages.

Victoria Quaynor- Ghana (AfNHi youth mentorship cohort member )

African feminists and HIV prevention advocates are united in their advocacy for ensuring African women and girls in their diversity have a range of HIV prevention options to choose from, including the dapivirine vagina ring (ring). While several African countries have approved the licensure of the ring and the WHO has included the ring on the list of essential medicines, some donors are backing away from their support of the ring for rollout beyond the planned Introductory studies as well as support for future research in longer acting rings. Advocates have called for accelerated access to the ring and not to lose sight of the
importance of championing choice and respecting the investment African women and communities have made in bringing the ring to this point. We applaud UNAIDS for promptly responding to a call from advocates to engage on this with their
convening of a meeting on 27 & 28 June in Johannesburg to discuss advocacy for ensuring women and girls have a choice and a voice. At the meeting, UNAIDS executive director Winnie Byanyima accepted the challenge to join women activists to call for accelerated global support and access to long acting HIV prevention tools for women, including the ring.

We hold UNAIDS leadership to their commitments:

• To address inequalities, policy and structural barriers to access the new long acting HIV prevention tools, including the ring, through the UNAIDS Global HIV Prevention Strategy
• For the UNAIDS executive director, Winnie Byanyima, to champion women-led HIV prevention in the continent and beyond, being a voice for African women,
• To open doors with donors – mainly PEPFAR and USAID – and further the discussion for a change of policy which will allow access and support to roll out the Dapivirine Ring,
• For the UNAIDS Regional East and Southern Africa office to work with advocates in the region to champion women-led prevention campaigns for the ring and other HIV prevention options
• To integrate a stronger HIV prevention focus into the UNAIDS regional East and Southern African strategy which is in the process of development.
• To ensure that young women have access to spaces where decisions are made that affect their choices.

UNAIDS committed to a follow-on meeting at AIDS2022 to discuss next steps and to ensure that the call
for choice resounds through the conference halls. At the same time, we commend WHO in their statement of continued support of their 2021 recommendation for the ring as an additional prevention option for women at substantial risk of HIV; and the Global Fund for their inclusion of the dapivirine ring in their procurement catalog. And we applaud the African governments who have approved the ring thus far and see the importance of listening to the communities who have said that choice matters in HIV prevention. We call on other African governments to approve the ring and ensure that young women in particular have options to choose from that can work in their lives.

Expanded HIV prevention options are critical for women in east and southern Africa where HIV is a persistent public health, reproductive justice, and human rights issue for girls and women. We call on all community, national, regional and global leaders to join us in ensuring young women have a voice and a choice in protecting their lives!

Authors
Yvette Raphael, Advocates for the Prevention of HIV in Africa, South Africa
Nomfundo Eland, Emthojeni, South Africa
Lillian Mworeko, ICW East Africa, Uganda
Vuyiseka Dubula, AEDC, South Africa
Chilufya K Hampongo, Treatment Advocacy and Literacy Campaign, Zambia
Maureen Luba, AVAC, Malawi
Rosemary Mburu, WACI Health, Kenya
Definate Nhamo, PZAT, Zimbabwe
Manju Chatani-Gada, AVAC, USA
Georgina Caswell, GNP+, South Africa
Dr. Lilian Benjamin Mwakyosi, DARE, Tanzania.
Joyce Nganga, Africa Free of New HIV Infections (AfNHi)
Gloria Mululu,Africa Free of New HIV Infections (AfNHi)