ROTTERDAM – The plastic tube draining excess fluid from around Heather Horwedel’s brain has broken multiple times over the past few years.
The spinal fluid buildup is a result of hydrocephalus, a secondary condition to the spina bifida that Horwedel, of Rotterdam, has lived with since birth. If the shunt draining the fluid from Horwedel’s brain to stomach is broken or clogged, doctors have to perform potentially life-saving brain surgery, something Horwedel, 34, has now gone through six times, including twice since 2018.
Those recent health issues, along with the realization that so much of what she has dealt with as a person born with spina bifida – a neural tube defect – were major motivating factors behind Horwedel’s decision to apply to be Ms. Wheelchair New York 2022. Friends and fellow advocates have long encouraged her to apply for the role, she says. It serves as a platform that enables her to educate, advocate and fundraise on behalf of the roughly 3 million New Yorkers who live with a disability.
This year, Horwedel finally felt like she had a perspective worth sharing.
“I have been asked multiple times by different friends, like you should do this competition, you’d be really good for it. And I always said, no, that’s OK. Someone else can do it. I kind of shied away from it. There’s somebody else that can speak up better than I can,” said Horwedel, who was named Ms. Wheelchair New York in March. “Then, I finally was just like why not give it a try?”
This week, the Mohonasen and Schenectady County Community College graduate is in Grand Rapids, Mich., as one of 21 contestants competing to be Ms. Wheelchair America, a role that would allow her to work on behalf of the more than 64 million Americans living with disabilities.
Far from being a beauty pageant, Ms. Wheelchair America is more of a public speaking competition that gets decided based on contestants’ advocacy, achievement, communication and presentation. The goal is to select the most accomplished and articulate spokeswoman for persons with disabilities.
“We are not a beauty pageant. We are a public speaking competition that empowers, educates and advocates for people with disabilities,” said Shameka Andrews, the state coordinator of the Ms. Wheelchair New York program, herself a past Ms. Wheelchair NY crown holder. “We are all about empowering women and celebrating women. It’s teaching women and girls that you can be whatever you want. You can be the princess and the president. You can look good and still be the boss. You don’t have to choose.”
A New Yorker has never won the national competition, which dates to 1973.
“Heather is someone that we wanted to participate for a long time because she has done so many things in the community,” Andrews said. “She is active in the community, and she is a great advocate for herself and others.”
Horwedel said she is looking at the Michigan trip, which will feature everything from interviews and the public speaking competition to social events, as a networking opportunity to bolster the advocacy work she plans to continue in New York.
Since winning the statewide competition, Horwedel has already been hard at work. She’s hosted disability awareness events at Kidz Korner, where she works as an after school teacher and summer counselor. And she attended an Abilities Expo in New Jersey in May, where she met fellow advocates and learned about equipment and programs available to help people with disabilities.
One of her bigger projects thus far has been to collaborate with Crossgates Mall to make the bathrooms more accessible for people who use wheelchairs.
“I could use the bathroom, but then trying to do something as simple as washing my hands, I couldn’t reach the soap dispenser without sitting on the counter,” Horwedel said of Crossgates’ bathrooms before the project.
As a result of conversations and visits with Horwedel, Crossgates reviewed its bathrooms and this spring made changes, such as lowering the soap dispensers so they were more accessible.
Going forward, Horwedel said one of her top priorities is to address the accessibility of playgrounds in the Schenectady City School District, an issue that Woodlawn Elementary School second-grader Mhy-Shawn Gibbs brought up with the district in 2019.
“That struck me because it’s something I dealt with when I was 5 or 6, and now I’m 34. We should be farther along,” Horwedel said. “Everybody says, well, the classrooms are accessible. But working in child care, I’ve realized that your playgrounds are an extension of your classrooms.”
This past school year, with the help and guidance of SEI Design Group and financial resources, the Schenectady school district budgeted for some of the work to take place at Woodlawn, which includes a rubberized ground covering (moving away from wood chips) as well as outdoor furniture, such as picnic tables, that provide for better wheelchair accessibility than standard picnic tables, according to a district spokesperson. In May, an SEI architect, who is a playground expert, visited the school to help with the design and planning and to provide other recommendations, according to the district.
“We hope to have the ground covering request fulfilled this school year and the new tables ordered,” said Karen Corona, the district’s director of Communication & Public Information. “The design team also visited all district schools to review accessibility and make recommendations for changes across the district.”
Horwedel said she was reticent to participate in the Ms. Wheelchair competition at first because she has anxiety about public speaking. But then she recalled her experience dancing as a kid. When she was 10, she used to accompany her younger sister to dance classes before deciding that she wanted to participate herself. From ages 10 to early 20s, Horwedel was part of a competitive dance group that performed a little bit of everything – lyrical, ballet, jazz. Initially, she was anxious about people staring at her while she danced. But then she realized being on stage was actually empowering.
“A lot of times for people in chairs, you get used to people staring. Sometimes it’s OK and other times, you’re just like, I don’t want people staring at me, because I’d rather have someone come up to me and ask me a question. I don’t mind answering questions,” Horwedel said. “If somebody was staring at me when I was on stage, they had a reason to stare.”
Andrew Waite can be reached at [email protected] and at 518-417-9338. Follow him on Twitter @UpstateWaite.