Myroslava Tataryn

Advisory Board

Myroslava’s social justice activism at local, national and international levels began at an early age and has included work with Environment Canada, Katimavik, and Disabled People’s International. Myroslava began her engagement in the international disability movement during her studies in Ghana in 2002-2003. Myroslava has since been active in promoting the inclusion of people with disabilities in worldwide AIDS advocacy efforts — an issue to which she was drawn through her personal experience with disability and her work with disabled peoples’ organizations in Canada, Ghana, Ukraine, South Africa, Uganda and Ethiopia. Myroslava graduated with a degree in Development Studies and Environmental Studies from Queen's University (Canada) in 2004 and a Masters of Science in Public Health in Developing Countries at the London School of Hygiene and Tropical Medicine in 2010. She was also awarded a Gordon Global Fellowship from the Walter and Duncan Gordon Foundation in 2008.

Contact Myroslava:  myroslava.tataryn@lshtm.ac.uk

An interview with Myroslava Tataryn

Q: Why is disability and AIDS an urgent issue?
A: Disabled people have historically been marginalized, particularly when it comes to sexuality. They’ve been left out of everything from marriage arrangements to regular sexual health services. Then HIV began, and what happened? All the agencies, all the networks, all the funding—disabled people were left out of all of it despite the fact that they’re at an equal (or, at times, greater) risk of infection!

Q: What’s your background with disability and AIDS?
A: When I was growing up, in high school and early university years, I was an environmental activist, not a disability activist. But, in retrospect, maybe I was one, “undercover.” From a very young age, inequalities always bothered me and I found myself giving talks on things like the use of language related to disability. Why we shouldn’t be using the word “crippled.” Why should we call skiing with customized equipment “disabled skiing?” That really annoyed me. I had moments of disability activism.
When I went to Ghana as an undergraduate, I chose disability as the theme of my work after noticing two things: every disabled person I saw was begging, and every time I walked down the street people commented on my distinctive walk. So I decided to look at that, to spend time investigating the perception of people with disabilities in Ghana. That was a turning point for me. I did a placement in northern Ghana at a resource centre for people with disabilities run by a very committed blind activist named Mercy Apoe, who became a mentor for me throughout my time in Ghana.
After returning to Canada, in my final year at Queen’s University, I took a course called AIDS, Power and Politics. It touched on many issues, but not disability, so I started to look for research. That was just about the time Nora Groce wrote about this issue in the Lancet. That’s when the two came together for me. After graduating, I worked in South Africa for a while, on the development of an HIV/AIDS Education project for people with disabilities in the country. Working on HIV/AIDS issues from a disability perspective provides an opportunity to tackle some of the issues at the heart of the marginalization of disability and people with disabilities. It forces us to talk about gender, power, belonging, relationships and children. All of this is fascinating and important for me so I’ve kept coming back to disability and AIDS throughout my work life.

Q: How did AIDS-Free World come to disability?
A: Stephen and Paula started thinking about it after a meeting convened by Disabled Peoples International: Nora Groce, Katherine Guernsey, Steve Estey, and Mary Ennis met with Stephen and Paula in New York when they worked for the UN, but not long before they founded AIDS-Free World. It’s been amazing to see how it evolved. They said they’d pay attention to disability rights issues in their future work, and they did.

Q: What are the biggest issues?
A: I’m not sure there’s one, single, big issue. There’s still lots of stigma day to day. There are still so many problems with access, still so many assumptions and prejudices.
But sexuality gets more attention now than it did when I started working in the field. Sexuality is the most compelling issue in many ways. HIV has been a way to address the underlying issues such as sexuality. In Ghana, and everywhere else, people want to talk about marriage, relationships, sex. How do you find a husband? What happens when your child is disabled? These go to fundamental questions of family and belonging and what is important. AIDS has forced us to talk about all this.
Things are more open. For example, there was a film about a men’s wheelchair rugby team called “Murder Ball.” The men were macho, aggressive, obnoxious and in wheelchairs. It challenges assumptions and it got into mainstream cinemas. I think that’s a good sign. We no longer have to justify being at the table, at least not in most places at national and international levels. Rural areas in many countries are yet to see these changes. But at an international level we’re at the table and we have to decide what to do now that we’re there.

One issue is the abuse of disabled people. But places with the highest, institutionalized abuse against people with disabilities don’t necessarily correspond with places with highest HIV prevalence, so things like rape and abuse by caretakers is not really studied and understood.

We don’t have data! We have more than we did, but not nearly enough. We need data – good data.
How do we get people to take this on?
How much will it cost?
Who will fund it?
All these questions have yet to be answered!
The past couple of years have seen a lot of positive changes but things need to change even more.

Q: What do you find most compelling about your work?
A:  The fact that more and more, people ask us, along with some other NGOs, our opinion and critiques of developments and policies related to disability and AIDS.

At first, I was based in Uganda, studying the strong AIDS and disability movements there. This was a good place to get a sense of what’s what. It’s good to have that grounding when I talk at the UN level. I feel I have a grounding in disability discourse but it takes ongoing work to stay on top of a field that growing by the day.

What keeps me going? Exposure! I love to meet people, debate, discuss—that keeps me going!