In Uganda, HIV and Disability share one thing in common, and that is discrimination and stigma. As much as Uganda has achieved when it comes to awareness about HIV/AIDS, little has been done regarding disabilities. The worst situation is when you are living with a disability and HIV; the community will say that God is not fair who made you suffer twice. HIV is not considered a disability in Uganda, but rather a disease that also causes a disability. This mismatching from the professionals and disability advocates has led to a number of issues: many people with disabilities living with HIV (PWDSLH) are frequently excluded from HIV education, prevention, and support services due to misconceptions that they are not sexually active nor do they inject drugs; healthcare services may be physically inaccessible and lack sign language facilities and other information formats such as Braille; and when access to medication is limited, PWDSLH may be treated as a low priority for services.
Amid the systemic bias, there is a high level of discrimination against PWDSLH by their family and community members. The very people that should be supporting us question our right to be seen as any other human being. There is a failure to see us as people who deserve all the basic rights to life including medication, education, food, shelter, and employment, and to be seen as useful members of the community who are independent and can make decisions about our own lives, families, and community.
A PWDSLH needs to be given a voice to speak for him/herself without being represented by others, because this empowers him/her and best allows him/her to act as a resource and even a mentor for others. Like other social movements throughout history and around the world have shown, self-representation leads to the promotion of rights, dignity, respect, and meaningful involvement in decision-making on issues concerning HIV/AIDS at all levels.
Often, when it comes to being a PWDSLH, we must wear two hats, attend two sets of meetings, and be spokespeople for two or more communities. As a person living with HIV, I know that:
– The community wants / needs to be sensitized to disabilities, how to handle PWDs, and what language needs to be used while addressing disabilities. This will improve their attitude towards people with disabilities living with HIV; also,
– The community wants to know about PWD lives: where is home, what jobs are being held, what are the everyday challenges and issues being faced? To have this info, we need;
– A disability data revolution to enable disability-inclusive development by including disabilities in data collection and monitoring mechanisms. The lack of data is a significant contributor to the present invisibility of disabilities in national HIV and AIDS programs. We need more in-depth understanding of the multifaceted links between disabilities and HIV to assist decision-makers in prioritizing interventions.
On the other hand, as a person living with a disability, I know that we and our community need:
– Access to equal opportunities to participate in HIV / AIDS planning, budgeting, and implementation;
– Inclusion in community development opportunities to increase household incomes and opportunities; and
– To be free from sexual violence and gender-based violence, which is endemic for people living with disabilities, putting us at higher risk of mental, sexual, and physical health risks.
For many years, through the Masaka Association of Persons with Disabilities Living with HIV & AIDS, many of us have been doing on-the-ground community work and activism. To help us with this work, I have begun to think about the role that art and culture could play.
– Art and culture can be used to sensitize cultural leaders to disabilities and HIV. When they know more, they help to ensure that the community has a positive attitude towards people with disabilities living with HIV.
– Through music, dance, drama, and movies involving PWDSLH, we will be able to push back against the erasure and negative representations that undermine dignity and truth for people living with disabilities and HIV.
– Art and culture could be used as a way of creating employment opportunities and increasing incomes for PWDSLH.
– Because culture is passed down through families, using it to create awareness of PWDSLH will ensure future generations know more, and act better.
All of the abovementioned work is important because in terms of media and cultural representation in TV, movies, visual art, dance, storytelling, books, news, and magazines, people living with a disability have not been lucky in Uganda. We have not been given meaningful coverage; the only time you will read about issues affecting us is if one of us is accused of committing a crime or it is International Disability Day.
Personally, as a disability rights advocate, I feel bad and offended, as media does not think that, despite our disability, we contribute to the social, political, and economic development of our country. It is disturbing because media is one of the most reliable means of sharing information.
There is a need to train the media and those working within the cultural sector to understand disability, the language to be used, basic sign language, and how to portray disability positively. This will enable the public to evolve in the way they treat people living with a disability and HIV, as well as promoting mentors and advocates for people living with a disability within the country. Here is an idea: people working at newspapers, magazines, museums, theaters, movie houses, and dance studios should hire people living with a disability and HIV to help them get the right information out!
PWDSLH are suffering silently from discrimination and limited involvement. In many cases, there are treatments and medicines available to help improve our quality of life. What we don’t always have is the political will to help us, or the cultural will to fully see us as people with things to say and the means to contribute. Art and culture are so often responsible for our erasure, or for putting us in a negative or limited light. What would it mean for curators and other art and culture gatekeepers to work with us, and to be part of a transformation in which the rights of all are respected?
Michael Miiro is a Technical Advisor on HIV/AIDS, disability, and sexual and gender-based violence for the Masaka Association of Persons with Disabilities Living with HIV & AIDS (MADIPHA). MADIPHA's mission is to promote access to comprehensive HIV and AIDS services by all Persons with Disabilities (PWDs) through advocacy, mobilization, sensitization, and training. MADIPHA aims to fully incorporate PWDs living with HIV/AIDs into society through advocacy measures that center PWDs while targeting key government agencies, line ministries, and civil society organizations like the Uganda Human Rights Commission. Miiro has trained village health teams, health workers, and police in sign language and held workshops about PWDs who are living with HIV and AIDS, as well as SGBV against PWDs. He worked with the local government on anti-poverty initiatives such as obtaining a grant for PWDs to start village and loan revolving groups, and given PWDs goats, chickens, vegetable seedlings, and coffee seedlings to generate income at the household level. At a regional level, he has worked with other stakeholders to lobby for changing policies that maintain the exclusion and segregation of PWDs from society. Michael holds a postgraduate diploma in community-based rehabilitation from Kyambogo University-Kampala and a Bachelor of Adult and Community Education from Makerere University-Kampala.