Grad student Heather Tomko fights for accessibility in Pittsburgh

Heather Tomko wants accessibility to be a priority in daily conversations.

Tomko, a graduate student and research assistant at Pitt’s School of Public Health, has a neuromuscular disease called spinal muscular atrophy, and has used a wheelchair since she was three years old. Throughout her life, Tomko said she has been an activist because the accessibility issues that affect her are often pushed to the side by others.

“[Advocating] is just something that you have to do because there aren’t necessarily always others advocating for you,” Tomko said.

Tomko advocates for accessibility rights in Pittsburgh through Accessible YOUniverse — the organization she founded in 2018 — and her blog, titled The Heather Report. Her efforts have earned her multiple awards in recent years, including the 2018 title of Ms. Wheelchair USA —  a pageant which highlights women in wheelchairs who’ve made great achievements.

In her year as Ms. Wheelchair USA, Tomko enjoyed some fun perks, like meeting Leslie Odom Jr. from the original cast of “Hamilton.” But she also was able to use her national platform to develop Accessible YOUniverse, a foundation aimed at making sure the needs of people with disabilities are thought of from the outset of city and architectural planning, rather than becoming an afterthought.

“Things like no curb cuts or cracks or potholes in the sidewalk affect our lives,” Tomko said. “And those are the things that people aren’t necessarily thinking about when they’re implementing changes.”

She held the first official kickoff event for Accessible YOUniverse a few weeks after passing the crown to the next Miss Wheelchair USA. Tomko described the event as a “state of the union” of accessibility in Pittsburgh, as City officials and other advocates gathered to discuss what could be done better within the City.

As a lifelong City resident, Tomko said it’s important to enact change in Pittsburgh — a pursuit that her childhood friend Katie Koenig can attest to. Koenig met Tomko in the fourth grade at Whitehall Elementary School, and the two have remained close ever since.

“She’s unstoppable,” Koenig said. “She has such a clear idea of her goals, and she goes for it.”

Koenig has witnessed Tomko’s struggles with accessibility firsthand in various ill-equipped buildings.

“We need to be mindful of the world we live in and make sure that the entire public has access,” Koenig said.

In addition to being a graduate student, being an activist and working as a research coordinator at Pitt, Tomko writes her blog, The Heather Report, where she shares about her life and what it’s like to live with spinal muscular atrophy. Tomko writes about everything from lifestyle and beauty to travel and personal experiences.

“Representation of people with disabilities is still very limited. So I feel like anything that can kind of break down that stigma, little by little, is worth it,” Tomko said.

The Heather Report has connected Tomko to many other people with SMA and other disabilities, who may have trouble getting out and about and making those connections in person.

“Growing up having SMA, I knew my sister and one other person who had it. But now I have met so many amazing people. Having that community is so important,” Tomko said.

Tomko’s community is right here in the City. She completed her undergraduate degree in mechanical and biomedical engineering at Carnegie Mellon University in 2010, then started working in Pitt’s public health department as a research assistant when she was fresh out of college.

Working in Pittsburgh allows Tomko to stay close to her family as well. Both Tomko and her sister, Jess, a senior admissions coordinator at CMU’s College of Engineering, have SMA. Tomko said her family has always been very supportive and advocated for her and her sister.

“My parents are great at advocating for us and I think I kind of learned how to be an advocate from seeing it all my life,” Tomko said.

Although she had a supportive family, Tomko wanted to take her advocacy to the next level and make sure that the accessibility issues she faced were discussed.

“I realized that if I didn’t start advocating in a larger way, things other than my own personal circumstances, I couldn’t expect to see change happen,” Tomko said.

Tomko participated in the Jewish Healthcare Foundation’s Jonas Salk Health Activist Fellowship, where she learned how to create a campaign to grab the public’s attention on a major health issue and work with community activists to strengthen their cause.

Through this program, her own personal experiences and her education in Pitt Public Health, Tomko was able to concentrate on important areas of accessibility.

“There’s a big public health focus right now on social determinants of health and how housing and your income and job opportunities affect your quality of life and your health long term,” Tomko said. “To me, I see accessibility, or the lack of accessibility, present in so many of those things.”

For Tomko, even things like getting a cup of coffee can be difficult if accessibility is not a priority. She often goes to the Starbucks on Fifth Avenue, but since there is no button to push to open the front door automatically, Tomko must wait for someone to open the door for her.

“Adding a button isn’t a huge, expensive installation, but it would make a huge difference in my everyday life. I think people traditionally think of disability issues as you know, access to employment, access to a house and health care,” Tomko said. “And that’s kind of where their mind stops. The day-to-day activities affect you more than the other things.”

Tomko’s activist efforts with Accessible YOUniverse reached Christina Abernethy, a North Hills native, who is another accessibility advocate. Abernethy met Tomko a little over a year ago at an event called City of Tomorrow Challenge for Pittsburgh.

“I was drawn to her,” Abernethy said. “She inspires me to do more and look for more when I’m out in the community. I love seeing the world through her eyes.”

Through Accessible YOUniverse and The Heather Report, Tomko has tried to ensure that accessibility is “not an afterthought in Pittsburgh.” She has big hopes for the future, but for now, she wants to see the proliferation of more simple improvements like push buttons and accessible entrances.

“Change is harder than the status quo, but I would love to see more efforts towards inclusion,” Tomko said. “I would like to see people reach out to people with disabilities and not just wait for them to show up.”