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The Disability and HIV Leadership Forum


The Disability and HIV Leadership Forum was an intensive full-day mobilizing and advocacy training session held on the eve of “AIDS 2012”, the 19th International AIDS Conference. Its objectives were twofold: The first was to ensure significant representation of people with disabilities in the world’s largest conference on HIV and AIDS. The second was to organize and help prepare a group of young leaders with disabilities (“the Advocates”) to utilize AIDS 2012 as a forum to advocate for their rights to meaningful inclusion in the overall global response to HIV, and to build a coalition that can continue and expand on that advocacy. Now three months since those young advocates—23 delegates from 20 countries—returned home, this brief report and evaluation examines,  with the benefit of hindsight, whether the Forum’s approach to inclusion, leadership development, and movement building was successful, what was learned and accomplished, and whether replicating and expanding the Forum model can make a significant and lasting impact on disability rights and HIV.

Our key observations following the Forum:

1. The Advocates’ work at AIDS 2012 clearly highlighted that, unlike other “most at risk populations” who are especially vulnerable to HIV, people with disabilities remain marginalized, excluded from information, prevention, and treatment, and deprived of opportunities to organize collectively among themselves, or to join other marginalized groups in defense of their equal rights. Lack of access, the low priority assigned to disability, and a dearth of financial support have made this true for over 30 years.

2. As individuals working on disability rights in their communities and countries, the young leaders who attended the Forum represent people who feel overwhelmed and isolated, more often thwarted than supported when they attend meetings as the lone representatives of an enormous though marginalized group.

3. The Advocates proved that by working as one cohesive and visible group, fewer than two dozen determined young activists can command significant attention and exert some influence over agendas and discussions, even when outnumbered at a conference by more than 1200 to 1.

4. The momentum created by the Forum has not dissipated. The capacity of the generation under 30 to build networks, share information, and sustain movements is unprecedented, and of course made possible by the Internet. The “digital divide” is being overcome by this generation.  We were struck by the capacity of all the Advocates to connect virtually, and to narrow the gap between those with regular access to the Internet and those with greater challenges in terms of resource constraints, vision and hearing impairments, or proficiency in English—the most common language of online communication. The opportunity to meet face-to-face facilitated connectivity in ways that could never have been achieved through online organizing alone, and the Advocates are using the Internet to sustain that momentum, which should be supported and sustained through further in-person meetings.

5. Although for practical reasons, people with disabilities often organize themselves according to disability (associations of the blind, universities for the deaf, etc.), when they met through the Forum, this broadly diverse group of young people appeared to interact with no regard for type of disability, nor for nationality, sex, race, or ethnicity. It was immediately evident that their single-minded interest was in finding common ground, discovering the similarities in their life and work experiences, exchanging observations, and forming a group that could build a global movement of young people.

6. As the meeting planners, the staff of AIDS-Free World and Disables Peoples’ International quickly had our pre-Forum concerns dispelled by the Advocates—worries about culture shock (several participants had never traveled internationally), possible disorientation (many had never been to the US or attended a large meeting), and debilitating jetlag (nearly all arrived the night before, many after traveling for 24 hours or more). On the contrary, by lunchtime, it was clear that the Advocates easily and energetically found ways of communicating, sharing information and ideas, planning, organizing, collaborating, and reaching consensus. Leaders among the leaders were already emerging, and were gradually encouraging the less outgoing Advocates’ participation. Friendships were being made, photos and contact details were being exchanged, and extracurricular social plans were underway. As advocates ourselves who have taken part in countless coalition-building efforts, we would not have dared to set expectations unreasonably high beforehand, but the outcome of this in-person meeting surpassed even our most ambitious hopes. By the end of the end of the one-day Forum, the Advocates were unquestionably a cohesive group, inspired and emboldened by hearing from seasoned disability rights “Pioneers”, and mobilized to create a network and a nascent movement.

7. International conferences are sprawling events, and disability is a relevant part of every concurrent session and discussion. Therefore, the larger the group of Advocates, the more coverage and influence they will have.

8. Disability as an issue is regularly ignored by policymakers, program planners, researchers, statisticians, funders, and even human rights activists working to reduce the vulnerability of every other ‘most at risk population’. In the global response to HIV, the issue is neglected, and its absence will go unnoticed until people with disabilities are visibly and audibly present to advocate on their own behalf. The adage applies: If you’re not at the table, you’re on the menu.

9. Years of AIDS-Free World and DPI advocacy with the International AIDS Society—the organizers of the International AIDS Conferences—along with the legal standards of accessibility required by the Americans with Disabilities Act, meant that this US-hosted AIDS 2012 conference was more accessible than the previous 18 International AIDS Conferences. Even so, like nearly every important AIDS meeting or conference, it was not organized to ensure the greatest possible representation of disabled people. That could have been achieved by including, for example:

•pre-conference promotional efforts that proactively target Disabled Peoples Organizations just as they target groups of health professionals, researchers, social scientists, international agencies, NGOs, and other potential participants, speakers, panellists, presenters, organizing committee members, and scholarship recipients. (Rather than expecting disabled people to seek ad hoc assurances that barriers to their participation will be removed, conference organizers should pre-emptively and publicly outline the measures they will take and the accommodations they will make to ensure full access for all);

•conference venues, hotel blocks, and transportation arrangements that are fully wheelchair accessible

•speeches, presentations, and discussions that are signed or captioned;

•online and hard-copy documents that are accessible to people with blindness or limited vision;

•registration schemes that waive all fees for the Personal Assistants required by some disabled delegates, just as no extra fees are charged for delegates whose full participation requires guide dogs, white canes, hearing aids, or wheelchairs;

•and main conference sessions, including plenary speeches, presentations, panels; satellite sessions; and entertainment events that address disability, and that feature disabled people.

Our conclusions can be summarized in five main points:

1. Representatives of a new generation of disability rights leaders reported that they found it both inspiring and encouraging to be introduced to older “pioneers” who have spent their lives advancing human rights, and who could attest to the fact that tenacity does in fact result in social change.

2. By working together as a united force, the Forum increased the visibility of people with disabilities at AIDS 2012 to an unprecedented level never approached at previous international AIDS conferences.

3. The joint advocacy activities planned by the Advocates at the Forum and undertaken at AIDS 2012 drew the attention of significant numbers of conference delegates to the links between disability and HIV, and to the ongoing marginalization of disabled people in the global AIDS response.

4. The Forum created a small but vibrant global network that, if supported, can grow exponentially and work to end the exclusion of disability, and of people with disabilities, in HIV data, policies, programs, services, research, and funding allocations.

5. The benefit that was derived from having young leaders meet in person, get to know one another, discuss their issues, and their work with “pioneers” and work together cannot be overstated. The Forum was a breakthrough for the generation of disability rights advocates born in the era of AIDS, who have been working individually but have never been given the support to address HIV together.

For a full report on the Disability and HIV Leadership Forum, please click here (PDF, 2.8MB).

For a copy of the Washington D.C. Declaration PLUS, please click here (PDF, 41KB).

A group of delegates are working together to gather feedback from each delegate who attended the Disability and HIV Leadership Forum and AIDS2012. Once the results have been compiled, a summary will be posted here.


The Advocates reading the Washington D.C. Declaration PLUS at the IAC

Highlights from the Disability and HIV Leadership Forum

Judy Heumann, Special Advisor on Disability Rights for the US State Department, addresses the Disability Forum advocates

Steve Estey addresses the Disability Forum advocates

Interview with Disability Forum Advocate Agnes Hausiku by Voice of America

Disability Forum Advocate Samrawit Yitayew Biyazin asks a panel at IAC if people with disabilities should be considered a most-at-risk group

AIDS-Free World co-director Paula Donovan describes the Disability and HIV Forum at the One Billion Strong reception in Washington, D.C., during the IAC