Author: Timothy Austin

Editor’s note: Terisa Thompson, former CARICOM Youth Ambassador and member, PANCAP Regional Youth Steering Committee presented the following at the Council for Human and Social Development (COHSOD) in September 2018.  Her appeal for client-centred sexual and reproductive health services for youths received rousing applause and endorsement from the COHSOD.  Read Terisa’s inspired speech below.

Right this minute in your minds, name five young people you know between the ages of 15-24 years.  Now please imagine TWO of that FIVE are one second from help but die because well, they needed permission FIRST; before someone could help to save their lives.

You already know the statistics and the context of the Caribbean youth challenges in relation to sexual and reproductive health.  Please also imagine that in addition to the already mounting debt each of our countries faces, we spent over US$15.9M of our Health Care budgets on HIV Programmes ALONE in 2013, that’s over Jca$1.4 BILLION, and I’m sure that’s still A LOT of resources in other countries in the Caribbean.

I can imagine so many more hospital beds, improved medical facilities, lifesaving surgeries, medical research, other health services that are so desperately needed and could be HUGELY impacted if we saved so much of those resources. That’s approximately a quarter of some Caribbean territories’ entire annual earnings in GDP.

So, on behalf of the millions of young people between 15 and 24 years of age living in the Caribbean, representing 20% of the Region’s population, we are inviting you to help save those TWO youth you thought about earlier and by extension the US15M, by providing access to youth-friendly, client-centred sexual and reproductive health services tailored to young people’s needs by addressing policies and laws regarding the age at which minors can independently access health care and by supporting civil society organisations with the capacity to reach and serve youth .

You can also achieve this by mandating and funding the production of higher quality data and ongoing research on youth outcomes. This includes disaggregating and reporting data by gender, key and vulnerable population and age group to reveal more about young people’s current needs.

This is a historic moment. Youth were not always invited to the discussion and even more so now to influence the policies and decisions, although we have always presented the Region with some of its most expensive issues. But today we are here because of your commitment to youth because you realise that youth understand youth and we are not a problem to be fixed, we are a resource and largely a great part of the solution!

Why is community engagement critical to the work of civil society? Think of a time when the work you had to do was geared towards a specific target group. How did you execute a successful project? Did you have to consult with the target group to ensure the outcome was in line with their needs? Engaging with the community is essential in the advocacy field; after all, how are you going to advocate for a group without knowing the needs of the target group.

Engaging in the community and being engaged in the issues ourselves, makes us aware and open to the different theories regarding the roles and relationships that contribute to it.

Communication and innovation are important in everything we do and are essentially vital components for community engagement and mobilisation to work. Communication strategies are crucial to support relationship building, ensure sustainability and improve understanding of initiatives among the communities. In community engagement, communication is pragmatic as it opens interaction, gives information and creates discussions.  Communication helps people to share their visions and make clear and realistic goals.

The work of J-FLAG falls under five strategic goals which were developed to guide our interventions.

Our five strategic goals are also in line with Jamaica’s 2030 plan, which is a strategic intervention to be achieved by 2030 to make Jamaica the place of choice to live, work, raise families and do business. The work of each department falls under one or more of the five strategic goals of the organisation, and we hope that by the National timeline given, the work we do will allow LGBT Jamaicans to be a part of the vision 2030 tagline.

Our five strategic goals are promoting security, livelihood, health and wellbeing of LGBT citizens, the inclusion of LGBT persons in policy and decision making, service delivery, human rights advocacy and activism and organisational sustainability.

For the organisation to meet its strategic goal every year, the activities and programmes conducted have to fall under these goals. For most, if not all of our activities, community engagement is a part of the beginning phases to guide implementation. After engaging with the community, which serves as an opportunity for information sharing and learning between the community and the organisation, the intervention of the projects and activities would be done to respond to the needs and issues raised.  Following this, an evaluation to test the success of the implemented project or activity would be conducted.

In the work we do at J-FLAG, community engagement is critical in our various interventions.  Regardless of the department doing the activity, engaging the community has allowed us to complete many successful projects, activities and initiatives by responding to the needs identified in the interactions. The support services department, for example, is at the forefront of engaging the community as it is the department that does support services interventions such as responding to instances of human rights violations faced by members of the local LGBT community.

In collecting these reports, engaging with members of the community is essential as it provides individuals with a safe space to report the various attacks that they have experienced. The face-to-face interaction has proven to be beneficial to community members as it allows the receiving and sharing of information between the officer and the client. It also allows for feedback on their experiences in accessing spaces and based on the feedback given, our response may take the form of engaging with these spaces to have discussions on how we can work together to make spaces accessible for the community.

This department is also responsible for the recently concluded Parents’ Sensitisation Sessions.  Due to homophobia and transphobia, it has been a challenge for some LGBT Jamaicans to remain in a healthy and happy family structure. As a result, several LGBT people continue to be displaced, and some become or remain homeless. Ultimately, this impacts on their ability to maintain a healthy and stable relationship with their family. The organisation in this intervention aimed to equip parents with as much information as possible with the hope that it will help them to take a step in repairing the relationship with their LGBT son or daughter.

The parent sensitisation sessions provided a space for parents to have conversations, learn from each other and equip themselves with techniques to deal with their offspring and respond to negative sentiments that might be fielded at them. In the introductory session, a survey was conducted around the discussion topics for the follow-up sessions. By doing this, we were able to get feedback on the discussion topics and what the needs of the parents were.  Then we can tailor the rest of the sessions around those needs.

Over the years, our health team has not only worked with the LGBT community, but healthcare workers and leaders from several public health facilities across the island to address needs raised by community members. Healthcare should be accessible to all, and it should be a space that is free from discrimination and violence. As such, our engagement is not only with the LGBT community but persons working at all levels of the public health system. At the end of 2018, we have successfully trained over 600 healthcare workers across the island, from security officers to medical doctors. This would not have been possible without the partnership of the Ministry of Health and Wellness and the National Family Planning Board. Our partnership for this project started in 2011 with a pilot, and full implementation began in 2013, where just about sixty persons were trained.

In making spaces accessible, we acknowledge the need for engaging the persons providing these services to members of the community, and through education and capacity building, the services provided will be improved, and facilities will be more accessible to the community. What accessibility means to us is that persons are comfortable in accessing the facilities and being treated fair, equally, without discrimination and with respect.

However, let me not rush ahead. Before engaging with the service providers, we have to first engage with the community.

We have to acknowledge that the needs of the community vary significantly across the island. And as such, the information on areas that need intervention will vary and will be a reflection of the challenges faced by community members in that region. After engagement and identifying the issues that need to be addressed, we then move with working at all levels in the healthcare system to ensure that LGBT people can enjoy access to our healthcare facilities. After training has been conducted, a follow-up is done with participants in the form of site visits. Our site visit is an assessment of the healthcare worker’s growth after attending various training activities to ascertain

the application of the knowledge gained and assessing the facilities, looking for IEC materials which serve to disseminate relevant information to other workers and persons accessing the facility on LGBT related topics, and topics which affect everyone such as self-care. Throughout the training, engagement is prioritised to build relationships with healthcare workers. Staff members also make themselves open and available to be contacted for support if individuals have questions and need someone to come in and do a presentation to their colleagues.

All work and no play makes Jack a dull boy, which is why, as an organisation, it is important that we provide spaces where LGBT persons can have fun. Our recently concluded 5th Annual Pride Celebration provides this space to LGBT persons across the island, a space to learn, to participate in athletic activities, to volunteer and to party.

“Pride” provides a space for community members to unwind and to engage with each other. Our celebrations also include a sports day, a tradeshow and forum, a day of service and a breakfast party. Each event aims to target different groups in the LGBT community across the island. This also serves as a form of engaging the community but in different ways.

Youths are a fundamental part of every society. J-FLAG has not forgotten our youths in the work that we do. Our youth department focuses on engaging youths, whether LGBT or not, across the island in various discussions that our youths are not always included in at the national level. Our “Building Bridges” series, involves us travelling to different parishes and interacting with youths through partnerships with Youth Information Centers (YICs), Police Youth Clubs and other youth-focused organisations to have discussions on issues such as human rights, mental health, bullying and relationships.

Our engagement with youths also comes in the form of advocacy training, equipping them with tools, and how to not only be an advocate but an effective one.  The youth department also engages national youth leaders to ensure that LGBT youth issues are represented at all levels of the conversations, so that our leaders are aware and willing to do their part in helping to make LGBT youths more included in society.

In summary, community engagement is essential in the advocacy field as it guides the work and interventions we do.  It allows us to be effective in our interventions, it provides a safe space to bring the community together, it serves as a medium for information sharing, and it encourages community members to participate in activities geared towards improving spaces that they access. For us to effectively advocate for groups we work with, to implement projects that will effectively address the issues, we have to interact with those who are living in the situations we are working to improve. Without doing so, we would be working blindly, and the work we are doing would be ineffective.

It is time that the Region begins the conversation about successful community engagement of key populations.  It is especially of paramount importance that parliamentarians from across the Caribbean seek to successfully engage key populations.

Far too many members of key population groups feel ignored, conveniently used, and forgotten in the scheme of things, when politicians should be the first defenders of human rights for all.

We do well to start from a position of relevance, compassion, and commitment to the cause of truth in facilitating education around matters of gender and sexual diversity.

Sadly many of the organisations in government agencies and sometimes even Non-governmental Organisations (NGOs), are so busy trying to be diplomatic, so busy satisfying the egos of supposed stakeholders that the successful engagement of key populations becomes a yet to be attained goal – waiting somewhere out there in the future.

Whenever we meet in the name of human rights and social justice, we may only realize successful community engagement of key populations if we are prepared to understand that where there is a conflict between politics and human rights, and where there is a conflict between religion and human rights, and where there is a conflict between philosophy and human rights, the human rights position, ought to prevail.

It will take more than periodical discussions to accomplish the necessary understanding and goals of comprehensive sex education, sensitisation around human rights and sexuality, and the whole matter of speaking to cultural values and human sexuality.  It will take more than fence-sitting positions.  To accomplish this necessary work for CARICOM, and in the continued interest of human development and informed by justice for one, and justice for all, we must each make a choice for a deliberate decision to work together versus a platform of self-righteous attitudes, and empty platitudes which may appeal to the gallery but work against successful engagement of key populations.

If we are going to be true to the millennium development goals, the promotion of gender equality, the empowerment of women, the combating of HIV and AIDS, Malaria, and other diseases, and the realization of a global partnership for development – then we must of necessity seek, encourage, and promote the voices and participation of key populations.  And we must not be afraid to involve Lesbian, Gay, Bisexual, Transgender persons, and indeed all gender and sexual minorities who are members of all our various societies across the Region.

Only a month ago, I facilitated presentations on HIV-related stigma and discrimination.  At Christ Church, Vineyard Town, we are also doing a weekly Youth and Community Outreach programme for children from the wider community.  The programme includes sensitisation around gender-based violence and empowering participants to respect self and others.  I do LGBT empowerment counselling, recognising that much of the pain encountered by LGBT persons, has been exacerbated by people in the space of the church and other religious experiences.  It is an approach that is enhanced by person-centred and cognitive behavioural therapies where much emphasis is often required around cognitive patterns which have been negatively formed through theological and spiritual abuse.

I believe that an essential part of my role is to remind the church that the Ethiopian Eunuch, a sexual and gender minority in the bible – was one of the earliest converts to Christianity.  Another important reminder that I have been bringing into focus is the fact that Jesus would have been a misfit in Caribbean society since he was never married, never had a woman, a wife or children.

When I hear concerns about including the word ‘man’ in phraseology which is intended to speak specifically to the particular violence and victim status of women and children – it feels so unnecessary to me.  That is like asking Walmart to ensure that its parking lots show signage for non-disabled people and not just people with disabilities.

We must understand that if we are to engage key populations to become vital stakeholders in society, we must of necessity affirm their rights, and protect their freedoms to be their best selves. 

Successful community engagement of key populations then must be a deliberate act in the interest of a better world for all.  Everyone, regardless of demographics, is a Human Rights stakeholder by virtue of being a human being.  Dominant groups are no more entitled to have their rights protected, and minority groups do not exist to serve the egos of those from dominant groups.  Successful community engagement then is from the heart and mind, and purposeful in the quest for inclusive and wholesome approaches for all members of the community.

At the closing session of the PANCAP Share Fair on 12 September 2019, in the Republic of Trinidad and Tobago, it was clear that there was a divergence of opinion, values and expected outcomes by participants on three of the 18 elements of the Revised Justice for All Roadmap 2020-2025 (Click for Revised JFA Roadmap). These refer in particular to (a) the abolition of discriminatory laws on same-sex relations; (b) the discordance or anomaly based on  the age of consent (16 years) and that of access (18 years) to sexual and reproductive health and rights  and (c) incorporation of  Comprehensive Sexual Education into Health and Family Life Education as a basis for age-appropriate sexual education.   This divergence of opinion was more identified explicitly with differences among faith leaders on the interpretations of theological principles and practices and the assumption allegedly espoused by certain factions within FBOs that “PANCAP is pushing a gay agenda”. In this regard, Dereck Springer, PANCAP Director, wisely provided an opportunity for participants to express their ideas in a therapeutic session that reinforced the value of respectful dialogue. Stakeholders committed, notwithstanding differences, to make their respective contributions to ending the AIDS epidemic in keeping with the principles of Justice for All.

This blog is intended to amplify the elements in the diagram, which identifies four tracks to advocacy.  PANCAP Stakeholders may be committed to one or more tracks. Hopefully the progression from “general” to “reconciliation” to “convergence” and “equality and human rights” will assist in unlocking misunderstandings and/or potential conflicts toward achieving the goals of Justice for All.

Context

PANCAP’s advocacy on the Justice for All (J4A) Roadmap resulted from a regional consultation in Jamaica in April 2014.  Its rollout has since been facilitated by Global Fund (GFATM) Grants and more recently,  through support from the 10th EDF (2018-2019).

 Elements of Advocacy

1. General Principles

 JFA has evolved into a programme that encourages all partners to contribute to the goal of ending AIDS by 2030 based on scientific, humanitarian, religious and human rights principles and practices. These tend to shape the general thrust of advocacy in all its forms: ensuring  that people, particularly those who are most vulnerable in society are able to have their voices heard on issues that are important to them; defending and safeguarding their rights;  and having their views and wishes genuinely considered when decisions are being made about their lives.

Advocates: “speak for those that have no voice; Embrace All. Intent on leaving no one behind.”

Emerging out of the JFA programme are activist advocates who promote and support a transformation in values and attitudes to secure social justice and equality. They exist at all levels in/or across organisations/communities/institutions.

This is best illustrated by fundamentals of the JFA, on greater involvement of People Living with HIV (GIPA Principle). PANCAP’s multi-stakeholder consultations too, provided the fora for activist advocates to engage in respectful dialogue. They came from different strands:  youth leaders, key populations, including Men who have sex with men, Transwomen, parliamentarians, faith leaders and National AIDS Programme Managers.  The unifying guiding principles were provided by the International Declarations from the UN High-Level Meetings 2011 and 2016, the PANCAP Caribbean Regional Strategic Frameworks, the UN 2030 Sustainable Development Goals (especially SDG#3) and the CARICOM Strategic Plan 2015-2019.

An Activist Advocate: “Engages meaningfully with the vulnerable, is a catalyst for moving to a different level of value sharing, upholds principles to achieve stated goals.”

2. Advocacy for reconciliation (between Faith and Science)

The Regional Faith Leaders consultation in February 2017 was a watershed in advocacy for action. The Declaration with 10 actionable recommendations that emerged from that consultation illustrates how, in principle, religious leaders integrated the UNAIDS scientific 90-90-90 Targets into their advocacy for ending AIDS. The Declaration recommended the acceptance of JFA in principle, the elimination of stigma and discrimination and the inclusion of representatives of key populations in the Steering committees of regional and national faith leaders’ networks.  The intention was to institutionalise national faith leaders’ networks to foster and collaborate on programmes, resolve divergent issues and implement common priorities based on requirements of specific religious organisations (Click for the Regional Faith Leaders Declaration).

The actual implementation of the JFA roadmap revealed the divergence in values among religious denominations that in fact, faith leaders are not a homogeneous group. The divergence has been more pronounced in response to the rulings by judges in Belize and Trinidad and Tobago, declaring discriminatory laws against same-sex relations to be unconstitutional. And further illustrated by the ruling of the Caribbean Court of Justice that “cross-dressing” in Guyana is consonant with a person’s human rights.

Some, as articulated by the Anglican Archbishop of the Caribbean and the Roman Catholic Archbishop of Trinidad and Tobago have supported decriminalising the buggery law. Others oppose siting theological principles and imposing the fear that the next step in the process is gay marriage. Yet others remain undecided while engaging in meaningful and respectful dialogue with parliamentary and civil society stakeholders.

Advocates for reconciliation recognise that values and faith are not the same thing, values and faith are reconciled when emphasis is placed on the dignity of Human beings as the transcendent dignity.

3. Advocacy for the Convergence (between parliamentary and religious systems)

Targeting the parliamentary system

The prospects for an accelerated response from Caribbean parliamentarians as advocates for change are mixed. Engagements under the PANCAP Justice for All programme have stimulated some movement starting with a Regional consultation of 49 parliamentarians chaired by Hon. Delroy Chuck, Jamaica’s Minister of Justice in May 2017 in Jamaica.  Since then, there have been six national parliamentarian sensitisation fora in Barbados, Belize, Jamaica, Saint Lucia, Suriname, and Trinidad and Tobago and four regional multi-stakeholder consultations.  These fora identified several major challenges that confront parliamentarians, including the weight of public opinion in most countries aligned the doctrinal values and to homophobia.  In his presentation to the Parliamentarian forum in Barbados (April 2019),  Dr Frank Anthony, PANCAP Consultant and Guyana parliamentarian stated:

“Each instance illustrates why the Law matters. Some Laws are unhelpful to health-seeking behaviour because certain groups like key populations may hesitate to interact with health services for fear of criminal sanctions. Others promote discrimination and stigmatise certain populations. Yet others expose individuals to increased violence and lower self-esteem and force them into risky behaviour”. ​

Hence, the overall recommendation has been to establish Joint Parliamentary Select Committees across CARICOM countries to deal with:

• Adopting the CARICOM Model Anti-discrimination Legislation
• Amending the Sexual Offenses against the Persons Act
• Reconsidering  attempts at criminalising HIV
• Resolving  the stalemate on Comprehensive Sexual Education

 The Jamaica Faith Leaders Network Model of Advocacy 

The Jamaica Faith Leaders Network led by the Jamaica Council of Churches (JCC) chaired by Canon Garth Minott has established a Religious Group Steering Committee (RGSC) which comprises faith leaders of a cross-section of denominations, counsellors, social phycologists, medical practitioners,  communicators and representatives of PLHIV and Key populations.  It has established linkages with the Ministry of Health, National Family Planning Board, the United Theological College, the Jamaica Theological Seminary, UNAIDS (Jamaica), AIDS Health Foundation (AHF), UWI Institute for Gender Studies and J-Flag.

More specifically, the JCC has undertaken activities which provide models that other faith leaders networks may wish to adopt.    First, is its mapping exercise assessing values and attitudes of Faith Leaders in the AIDS response. This has enabled the Network to identify areas of consensus and differences.  Second, in response to funding issues, it has pursued several options. Among them is the signing of an agreement with the Ministry of Health as a sub-sub-recipient of the Global Fund grant. This project focuses on interventions in human rights advocacy with special focus on reducing stigma and discrimination within religious organisations generally and among religious leaders in particular. Third, as a special feature of the mapping exercise, its aim is identifying religious agencies offering services for healthy living which will serve to enhance the directory of services offered by the National Family Planning Board.

Fourth, the  RGSC has initiated a dialogue with parliamentarians providing sensitisation on issues related to sexual health and the role parliamentarians play or can play as leaders in the society, major drivers of the epidemic, and honouring various treaties signed by the government which impact human rights.

“Advocates for reconciliation recognise that values are rooted in socialisation, values are subject to change over time.”       

4. Advocacy for Equality the primacy of the Rule of law and upholding Human Rights values

 The CCJ Project Equality is one of the best illustrations of what it takes to promote and apply the principles of human rights.  Its activities are based on evidence produced by socio-legal research with a view to examining the legal concepts of equality and non-discrimination; exploring how best to bridge the gap in trust and fairness that currently exist in the administration of Justice in the Caribbean; identifying the impediments in accessing justice commonly faced by groups at higher risk of discrimination, vulnerability and social exclusion in society and recommending steps and actions judicial officers can take to improve access to justice and secure equality before the law for vulnerable groups.

Both the PANCAP Director and I have participated in Judicial Conferences involving Judges, Magistrates and lawyers and administrators in Trinidad and Tobago (2017) and in St Kitts and Nevis (2019) at which the rollout of Project Equality was presented. Its results established the importance of applying the legal concepts of equality and non-discrimination. These hinge on the principle that “all humans are born equal in dignity and rights”  (Article 1 of the Universal Declaration of Human Rights 1948).  They provide concrete ways in which the legal advocates strive to remove stereotypes that lead to stigma and discrimination.

Advocates for Equality are critical to “Building bridges so that ‘the others’ do not stand alone”; anchoring JFA Roadmap in the universal principles of “Equality before the Law”; protection rights  ‘based on the rule of  law and scientific findings” and  “the fulfilment of all human rights entitlements.”

Conclusion

These elements of Advocacy for the principles of JFA illustrate the major concern for protecting the rights and views of the vulnerable. These principles are consistent with the public health outcomes required to end AIDS and are fully articulated in the PANCAP CRSF 2019- 2025. Advocacy is also concerned with breaking barriers of stigma and discrimination, which according to the results of both biomedical and behavioural research are impediments to achieving 90-90-90 scientific Targets.

They also are responses to the epidemiological trends which illustrate that key populations, especially Men who have sex with men are disproportionally subjected to barriers for access to prevention and treatment services.  But so too are other vulnerable groups including sex workers, Transgender women, the persons with disabilities and prisoners.  The JFA process through consultations and sensitisation sessions has produced a revised JFA Roadmap 2019-2025. To achieve maximum results, stakeholders at country and community levels need to take positive action for implementing the 18 actionable recommendations of the Roadmap. Fortunately, only 3 – 4 of the 18 recommendations provoke disagreement among PANCAP Partners.

With advocacy for protecting the vulnerable and with actions designed to achieve “reconciliation” and “convergence”, the optimistic outcome is that an increasing number of stakeholders will become activist advocates for equality, social justice, and the rule of law and human rights which are prerequisites for ending AIDS in the Caribbean by 2030.

I spent a week in Trinidad at the PANCAP Third Regional Meeting of Youth Leaders on Sexual and Reproductive Health and HIV and AIDS. I interacted with other young people with such a diverse range of backgrounds, experiences, and passions. These all fit together and blended so well into commonalities that the experience proved quite enjoyable.

One concept which stuck with me from the first day and throughout the rest of the week was ‘Collaboration is our Currency’, as presented by Terisa Taylor from Jamaica. This succinctly embodied the progress that we can make with concerted efforts at local, national, and regional levels. Andre Browne from St. Vincent further cemented this for me with a quote from Robin Jones Gunn: “If you want to go fast, go alone. If you want to go far, go together.”

Exploring issues such as the current state of adolescent sexual and reproductive health in the Caribbean and the existing legal frameworks which hamper education campaigns, reaffirmed what we all knew – we need to strengthen partnerships and pool resources to advance our goals.  Participants shared some very insightful experiences in their advocacy work, some of which spoke straight to my heart and re-energised my spirit to go back home and help push for more. We spoke of innovative ways to tackle and address social health issues, and we shared personal stories in and out of the meeting room, which helped us learn and appreciate each other.

Most importantly, however, we committed to becoming better organised as youth leaders and advocates for the representation that our fellow youth deserve.  We also committed to being the ones to sit with our older adult colleagues currently occupying spaces of power and help them see past the assumptions and prejudices which distort policy-making on sexual health and ultimately, our future within our region.

While we closed off the four-day event, a single mantra repeated itself in our subconsciousness: “Nothing for us, without us.” We were ready to move forward.

I was diagnosed with HIV when I was 18. I started being an activist three months later, basically, at the same time, I started taking antiretrovirals. Since 2015, I have worked as a social mobilization advisor, focusing on youth at the Ministry of Health in Brazil.

I was 15 years old in 2006 when I had my first cell phone. At the time, technology was not being used to address issues related to sexuality. I come from a rural family. They did not know a lot about technology and there was strong resistance to embracing technology. In parallel to this, I was curious. I started using MSN for sexual networking – exchanging photos, making video calls and getting to know people.

In 2009, at the age of 18, I moved to São Paulo. I was dazzled by the city, its rhythm and its intensity. Soon, the parties started and, with them, the relationships. I was already completely in love with the world of technology and I used it to make new friends and to meet dates who circulated in the same tech universe. What I loved most about using technology was the speed at which everything happened.

My sweetheart at the time fell ill. My world froze. I was overwhelmed by doubts and uncertainties. He was hospitalized and his health deteriorated. He got worse day by day and then he passed away. During that period, I felt apathetic, tired and dull. I observed that my hair got thinner and that something was not right with my health. It was a matter of days before I was diagnosed with HIV. From there on, my life changed.

I struggled to accept my diagnosis and I joined a Facebook group of young people living with HIV. Here, people living with HIV were welcomed, listened to and helped by other young people. The Facebook group was incredibly strong; it has also developed into a powerful political and activism tool.

I realized that technology was used for various purposes and I wondered, why not use it to reach young people and promote attitudinal changes around HIV? Day by day, I found ways to do that by partnering with dating apps to promote the spread of sexual health information.

“The stigma, prejudices and discrimination against people living with HIV in dating apps are very quiet. You feel it slowly, in small doses, when you realize that people do not send messages to you, that no one sends pictures or has any kind of interaction with you when you reveal your HIV positive status.”

Recently, this has changed. People are more open to discussing HIV in dating apps and they also seek information, especially on PrEP. Dating apps provide an excellent opportunity to reach out to young people and increase access to HIV information, making it available at any time through banners, messages, pop-ups and other resources. Enabling HIV and prevention information to be linked to a profile makes conversations on the subject lighter and more natural.

This includes newer features, such as a field that allows you to show your HIV serology, whether or not you use PrEP and when you had your last STI test. These features are key to changing behaviour and attitudes surrounding HIV through apps.

I became an ambassador for an app and promoted prevention through the partnership. This was, in fact, the app that my husband approached me on. It was an important moment in our lives, not just because this is how we connected, but also because the app served to improve his knowledge about HIV and helped change his attitude.

We started dating in that period and we got married this year. I live with HIV and he does not and we are adept at U=U (Undetectable = Untransmittable) and combination

From 30 July – 2 August 2019, I participated in the Third Regional Meeting of Youth Leaders in Port-of-Spain, Republic of Trinidad and Tobago. This is the last episode of a journey that started back in 2017 when PANCAP set in motion a project to support and connect young advocates of Sexual and Reproductive Health (SRH) and Rights in the Caribbean region. Over the course of these two years, a steering committee was formed. Meetings and training activities were held. People came and went, but those who stayed during this last meeting demonstrated how strong the bond had become and how commitment and growth can happen when you support talented young people to work together. The agenda of the meeting was designed by the steering committee members with the support of the PANCAP Director, Dereck Springer and the PANCAP Knowledge for Health project.  Many inspirational stories were told, there was so much to learn from experiences including using social media to raise awareness about discrimination to the monitoring of public services by key populations and so much more!  In all of this, young people were leading the way. On the last day, I heard one of the older assistants say “there is a very high level of skill among these young people”.

My name is Njemile Webb, and I am the Youth Advocacy Leader of Comtalk International, Republic of Trinidad and Tobago. I have been performing Advocacy work for almost all of my teenage years because of my passion for helping others and making a difference as it relates to HIV and AIDS.

My experiences being at the PANCAP Youth Leaders Meeting has been nothing short of amazing.  There was constant reinforcing of knowledge. I have had the pleasure of networking with other Caribbean Young Leaders where information and statistics at country-level are shared as it pertains to young persons.

I have noted that there is still a lot of work that has to be done within the Caribbean region, our continued dedication and aspirations as young leaders are just a few of the mechanisms that would assist with our target goal.

Life in advocacy can be challenging at times, but with adequate guidance and a positive approach, the target goal will be accomplished.  I am motivated and propelled to my task at hand, which is assisting the young persons within my country on all issues.

I am Trinidad and Tobago, and by extension, the Caribbean region. Together as youth leaders, we can make a positive change. There is surely nothing for us without us.