Q+A: Heather Tomko

Photo: Carol Tomko

In her lifestyle blog, Heather Tomko shares hot takes on style and Pittsburgh coffee shops, mixed in with personal details of living with spinal muscular atrophy, a rare genetic neuromuscular disease. Using a wheelchair for mobility, Tomko’s goal is to show how her life is different, and not so different, from those of other people. After a frustrating ordeal trying to find an accessible restaurant on a Saturday night in New York City, Tomko returned home with a mission to create change. Three short years later, the 31-year-old is a full-fledged public health and disability rights activist.

Q: How did you first get involved with advocacy in Pittsburgh?
A: When I returned home from my trip to New York City, there was an email in my inbox from the Jewish Healthcare Foundation about their Jonas Salk Health Activist Fellowship. It was the tipping point for me in figuring out how to more formally begin my work in advocacy. As a fellow, we picked a project of our choosing within public health, and they helped guide us. The work that I did as a fellow became Accessible YOUniverse, an advocacy organization intended to pull together the disability community and city decision-makers. Accessible YOUniverse was in its infancy during my involvement with the Ms. Wheelchair USA pageant, and I used it as my platform. It was all a domino effect and it helped to propel me forward.

Q: You’ve always been an advocate for yourself out of necessity. Was it challenging to switch to a more public advocacy role?
A: That journey took some time. A lot of it is coming to terms with the label and the identity “disabled” and coming to terms with the stigma that still surrounds disability in society, especially because mine is so visible. Often people will talk with whoever I am with rather than talk directly to me in social settings because they’re still not sure how to act around someone who is disabled. It was kind of this internal struggle of, I’m OK with my disability and I want to make sure people know there is more to me than my disability. I didn’t want to pigeonhole myself into a strictly disability-focused role because, while my disability is a huge part of my life, it’s not the only part of my life. I realized I couldn’t expect things to change for people with disabilities if I wasn’t willing to work toward making it happen.

Q: Why is visibility so important?
A: So many accessibility issues are issues you don’t pay attention to unless you have to. I’ll often call places and ask if they’re accessible. They’ll say, “Sure, there’s just one step to get in.” Many people take that one step into the building and don’t think about it as a problem, but for me, one step might as well be five steps might as well be 20 steps because I use a 300-pound wheelchair and it’s not getting over that one step no matter what you do. Oftentimes, only after hearing personal stories or being made aware do people start to notice it more and more in their everyday lives. And it’s so important to have people with disabilities and people without disabilities advocating for these changes.

Q: Is that one reason you joined the advisory board at The Warhol?
A: The Warhol has a great reputation in the disability community for really going out of its way to be inclusive. I was aware of that before I joined the board and continue to be impressed by the way that the staff always circles back to it and makes sure it’s included in the discussion and programming at all points. Having representation at all levels is so important. I’ve often found that people’s assumptions of the needs of people with disabilities versus what you would find if you actually asked people with disabilities what their needs are, they often diverge greatly. I serve as a voice and as a reminder to make sure we’re meeting the needs of everyone.

Q: You recently started a new job?
A: I graduated from Pitt in May with my master’s in public health. Shortly before, I started with Pitt’s National Rehabilitation Research and Training Center on Family Support—a multi-disciplinary center for caregiving that’s very new; it just launched in 2019. I’m the outreach coordinator and liaison between researchers and the public. This new position is a blend of the advocacy work that I’ve been doing outside of my job and being a connector between the community and other organizations, but also still built on my public health background.

Q: In your downtime, what are some of your favorite things to do for fun?
A: I love live music and live shows, whether at Stage AE or the Benedum. I’m also a caffeine addict and love trying out coffee shops all over the city; it’s a good way to explore different neighborhoods.