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Q&A: Disability and HIV Leadership Forum

On July 21, 2012, AIDS-Free World, in collaboration with Disabled Peoples' International and Gallaudet University, is pleased to present the Disability and HIV Leadership Forum, a full-day advocacy training immediately preceding “AIDS 2012,” the XIXth International AIDS Conference in Washington, DC. The Forum will bring together young activists and leaders under 30 from around the world to learn from seasoned advocates in the fields of HIV, disability rights, and human rights. More information on the Disability and HIV Leadership Forum can be found here.

Introduction and Vision
Veteran disability rights activists share a deep concern: when they look over their shoulders to the next generation, they don’t see the droves of young people they had hoped would be ready by now to assume leadership of the disability rights movement as the current leadership ages. They don’t see many young activists at all who are fully equipped to lead the struggle for inclusion of people with disabilities in the global AIDS movement. What they do see are young activists who have boundless potential, but who’ve been given few opportunities to develop the advocacy skills that can transform raw energy, ideas and passion into successful strategies for social change. They see both a serious need and an excellent opportunity to help the next generation ready themselves to lead the global disability rights movement.

A Disability and HIV Leadership Forum of young people with disabilities from around the world will meet that need. It will, for the first time ever, connect the current and future leaders of the disability and the AIDS movements. It will use the time immediately preceding the upcoming International AIDS Conference to prepare young people with disabilities to take part in AIDS 2012 — and not as passive observers, but as a formidable presence, ready to test new advocacy skills and begin building their generation’s disability rights movement.

AIDS-Free World is an international organization that advocates, often at the highest levels, for more urgent and effective global responses to the AIDS pandemic. Organizing a pre-AIDS 2012 Disability and HIV Leadership Forum is a challenge that we feel especially qualified and eager to take up. Since our start in 2007, we have worked toward the greater inclusion of people with disabilities in the worldwide AIDS movement — and we have always devoted special attention to the biannual International AIDS Conference. In conjunction with Disabled Peoples’ International (DPI), we gathered leaders of the disability rights movement from several continents and put on the first-ever “town hall” on disabilities at the 2008 conference in Mexico City; at the next conference, in 2010 in Vienna, we reconvened to see how much had changed in the interim with a panel we called “Two Years Later.”

In anticipation of the 2012 conference, AIDS-Free World outlined what we saw as an inspired vision for an official “pre-conference forum” — an idea that was first proposed to us by our colleague, international disability rights activist Steve Estey, who has worked with us on the last two International AIDS Conferences. The vision of a forum that will give young people the tools to break down barriers to inclusion in the fight against AIDS, and the skills to lead and sustain the disability rights movement, is very clear. The remaining barrier is among the highest. Breakthroughs are always expensive, and so the challenge for us is to find organizations that recognize the value of investing in the young people who, if supported, will lead us into the future.

The global AIDS movement has yet to join the rest of the world in fully recognizing the human rights of people with disabilities. The XIXth International AIDS Conference in July 2012 will bring tens of thousands of AIDS advocates, researchers, medical professionals, government officials, activists, corporations, policy-makers and political leaders to Washington, DC. In order to take advantage of this opportunity, AIDS-Free World is developing a Disability and HIV Leadership Forum that will take place immediately prior to the AIDS conference. The Disability and HIV Leadership Forum will bring together young activists from around the world to discuss the intersections of disability, human rights and HIV, to develop advocacy skills for advancing their disability rights work, and to connect with other advocates.

What will the Disability and HIV Leadership Forum achieve?

The Forum will support the training of young people as the movement’s future leaders, and it will ensure that, in place of tokenism, the meaningful presence and involvement of people with disabilities in the world’s foremost AIDS conference signals that the “human rights approach” of the global AIDS movement truly applies to all.

The Forum will remove some of the barriers that stand between the next generation and their full leadership capacities. It will expose them to the seasoned pros, who have invaluable advocacy lessons and skills to impart, and give them the modern skills needed to build and maintain networks in a globalized world. Young disability rights advocates who’ve been active in their own cities or countries will be given the opportunity to attend AIDS 2012, to connect with one another and to learn how to bring new people into their movement. They’ll hear from experienced global advocates about the skills and tactics that can cause closed doors to open, enlist experts, grab the attention of authority figures, persuade decision-makers, interest journalists, keep elected officials on their toes, and help stave off despair at those inevitable points when it will all seem fruitless.

What concrete skills will be taught at the Disability and HIV Leadership Forum?
Participants will have an opportunity to discuss issues related to disability and HIV with one another, and they will have an exceptional chance to hear from a range of global leaders, addressing issues such as HIV, disability rights, LGBT rights, women’s rights and international human rights. Participants will also learn and develop concrete advocacy skills that will help them to advance their work for disability rights. Sessions may include topics such as:
• Media and communications: how to draft a press release, host a press conference and write an Op-Ed
• Public speaking
• Becoming effective activists: how to make demands that will be heard by the topmost decision-makers
• Technology: how to use social networking and media sites such as Facebook, Twitter, LinkedIn, YouTube and The Hub to build a global movement, stay connected and conduct advocacy campaigns
• Accessing and utilizing the United Nations system: how to work with the United Nations at a country, regional and international level, and how to advance disability rights within the UN Secretariat, UNAIDS, UN Women and other UN Agencies
• Funding and disability rights: how to influence multilateral funding structures such as PEPFAR and the Global Fund to Fight AIDS, Tuberculosis and Malaria, and ensure that people with disabilities are included in funding allocations
• Utilizing regional and international human rights systems
• Lobbying governments to ratify the Convention on the Rights of People with Disabilities
• Lobbying governments to improve legal rights and protections for people with disabilities, including laws that protect disabled workers, or provide equal access to education, health facilities and public buildings
• Lobbying governments to abolish discriminatory laws against people with disabilities and ensure that anti-discrimination laws include people with disabilities
• Recruiting, enlisting and engaging pro bono lawyers so they become disability rights advocates and work to improve national laws on disability and HIV
• Advocating for disability rights amongst HIV/AIDS service organizations: how to ensure HIV organizations are complying with human rights standards and providing access to HIV prevention, treatment and care for people with disabilities
• Partnering with women’s rights organizations to examine issues affecting women with disabilities
• Partnering with LGBT organizations and groups of people living with HIV to examine issues affecting people with disabilities in these communities

Who will participate in the Disability and HIV Leadership Forum?
Approximately 30 global activists under the age of 30 who demonstrate leadership potential will be selected to attend the conference from all over the world. The group will include a combination of disability rights activists who have not yet become engaged in AIDS work, as well as people with disabilities who are AIDS experts.

Who will present at the Disability and HIV Leadership Forum?
The conference will draw upon the expertise of leaders in fields such as disability rights, the AIDS movement, international human rights law, women’s rights, global health, communications and technology. AIDS-Free World will invite speakers and trainers from amongst the thousands of HIV activists already traveling to Washington for the International AIDS Conference, as well as prominent disability rights activists and academics from around the world.

When will it take place?
The Disability and HIV Leadership Forum will be held on the day immediately prior to the start of the International AIDS Conference in Washington, DC, and participants will then go on to attend the AIDS conference. The event will bring together a group of activists who might not otherwise attend an international AIDS conference – because of the prohibitive expense, or because they were not informed about or included in the AIDS conference, or because they did not feel that their issues would be addressed, or because of concerns about accessibility at the AIDS conference venues.

How will the Disability and HIV Leadership Forum link and contribute to the 2012 International AIDS Conference?
An initial goal of the Disability and HIV Leadership Forum is to increase the active engagement of people with disabilities in the 2012 International AIDS Conference. The 30 young activists will participate in the AIDS conference – as official delegates, as informed advocates, as youth leaders, as savvy organizers, as volunteers, as key panelists – where their presence, enhanced by their newly acquired advocacy and networking skills will help to end the silence from the global AIDS community on disability issues.

In addition, the International AIDS Society will be asked to consider registering the Disability and HIV Leadership Forum as an AIDS 2012 official pre-conference – a distinction so far conferred on just two pre-conference gatherings. This recognition will help garner publicity and awareness about the Disability and HIV Leadership Forum amongst delegates, speakers and media attending the AIDS 2012 Conference.

Finally, in the months leading up to the AIDS conference, AIDS-Free World will continue to discuss, with the conference planners, ways to more fully incorporate disability issues into the conference agenda. This includes adding sessions on disability and HIV and ensuring that people with disabilities are included as speakers in sessions on a whole range of other topics. It will also include accessibility issues – ensuring that this conference is designed in such a way that everyone can participate, and that conference organizers include, for example, CART technology, Braille materials, sign language interpretation, wheelchair access, and registration fee waivers for personal assistants. Our advocacy on these issues during the past two International AIDS Conferences in Mexico City and Vienna has resulted in some improvements, but the International AIDS Society agrees that much remains to be done. The 2012 International AIDS Conference – to be held in the United States, a country recognized globally for its leadership on disability issues – represents an opportunity of historic proportion.

Where will it be held?
The Leadership Forum will take place in Washington, DC. Gallaudet University, a leading university for Deaf and hard of hearing students with a global reputation for its role in the disability rights movement, has agreed to host the one-day event on their campus.

Is this a good investment?
As with most initial contributions to “movement-building,” the benefits of this investment will grow both rapidly and exponentially. The Disability and HIV Leadership Forum will equip young global leaders with advocacy tools to strengthen and expand their disability rights work. Before even returning home, the leaders will immediately apply their skills and seek to impact and influence the global AIDS community assembled for the conference. And finally, the participants will return to their countries, spanning across the globe, where they will share their skills with their home organizations and networks. By AIDS 2014, the world should see the emergence of a strong, vocal, active and effective movement to address disability and HIV.