Style show for all to offer empowerment on the runway

­­­­­­­­­­­­­­­­­­­­­­­­­­Six years ago, Kendra Gottsleben strutted her sassy self on a fashion show runway in New York City.

She left the stage determined to give others the same opportunity.

That dream comes true a little more than a year after Gottsleben started the nonprofit Rare by Design to celebrate what makes all people unique and extraordinary, including those with disabilities, rare diseases and others who may not always feel included for whatever reason.

Both Tana Zwart and Abby Bischoff will take part Saturday’s The Style Show: A Runway to Empower.

“This style show is really for all bodies but more particularly emphasizing that people with disabilities need to be included in the media and the events,” said Zwart, who has the FSHD muscular dystrophy variation and uses a wheelchair. “Hopefully, disabilities can be more normalized.”

Bischoff said inclusion and equity in various spaces has been important to her for years. Fashion often is viewed as the fluffy side of life — as if what a person wears doesn’t matter, she said. That’s not true.

“Every day we’re expected to wear clothing, and it’s a reflection of our style and experiences,” Bischoff said. “I am very privileged in the fact there are plus-sized retailers, but people with different abilities can have even less access. To be able to shine a light on that is something I’m happy to do.”

Gottleben’s vision for the style show is truly inclusive, Bischoff said. Her perspective comes from having a rare disease, but it is inclusive of “everything: race, ethnicity, sexual orientation. It’s really, really inspiring,” Bischoff said.

Gottsleben, Rare by Design’s founder and executive director, was born with a rare genetic condition, mucopolysaccharidosis, or MPS. She graduated from Augustana University and serves as the marketing communication specialist at the Center for Disabilities at the University of South Dakota Sanford School of Medicine.

People like her who have what she calls a “disability slash rare disease” have more opportunities for support groups, events and social gatherings if they live on the East or West coasts than those in the nation’s midsection, Gottsleben said. That’s why she decided to create something.

“What Real by Design strives to do is assist individuals with rare diseases and disabilities along with their families in creating awareness of inclusion and just living life positively,” Gottsleben said. “I wanted to create something for sure in South Dakota but also giving opportunities in the Midwest.”

While diversity in areas such as ethnicity and gender have received much attention in recent years, people with disabilities and rare diseases rarely are invited to join the conversation, she said. “What people don’t realize is people with disabilities are the biggest minority group of the minorities. It can cross all the different identities that people might have.”

In 2016, wearing adaptive Tommy Hilfiger clothing, Gottsleben walked down a runway for a style show hosted by the Runway of Dreams Foundation. The organization’s goal is to empower people with disabilities with confidence and self-expression through fashion and beauty inclusion.

Gottsleben had offered her social media skills to the foundation and then stayed on as a volunteer, helping when needed. The foundation was started by a woman whose son has muscular dystrophy. Buttons and zippers were difficult with his fine motor skills, but he wanted to look like everyone else. The mother adapted her son’s clothes but knew she couldn’t be the only one facing those struggles. She began contacting famous clothing lines, urging them to start an adaptive clothing line.

“It would have defeated the purpose to start her own,” Gottsleben said. “She wanted to help mainstream companies realize there’s an opportunity.”

Before she was asked to model, Gottsleben never dreamed she would take part in a night with such energy and impact. That’s what she wants for her upcoming style show.

She also wants to increase awareness.

“You may be able to wake up and pick out your clothes without hesitation, but for some people out there, it may take 20, 30, 40 extra minutes because of our fine motor skills or our body not cooperating,” she said. “Or if they have individuals who help, it could save them five minutes so they can do something else.”

Although she has weakness in her hands, Zwart doesn’t find it too difficult to dress and undress. She does look for clothing that is easy to get on and off, and buttons without difficulty. Her biggest issue comes when she’s shopping for clothing, maneuvering her wheelchair through overcrowded racks of clothing and narrow aisles.

To have proper and equal representation for all abilities, people need access, said Zwart, a freelance media manager.

Price also is an issue. Clothing that comes in larger sizes often has an extra cost, although the reverse isn’t true for attire in petite sizes.

“They just tack that extra on to plus-size customers because they don’t have much of a choice,” said Bishoff, executive director of the Stockyards Ag Experience.

Five women sit on Rare by Design’s board of directors. One board member, Ashley Ballou-Bonnema, founded Breathe Bravely and serves as its executive director. She is a local and national spokeswoman for people with cystic fibrosis. Proceeds from the style show will be given to Breathe Bravely to assist in its work.

“Ashley is a person I’ve admired for years, and I’ve followed her blog,” Gottsleben said.

Ballou-Bonnema is a professional vocalist. Breathe Bravely offers sINgSPIRE, a 10-week program combating cystic fibrosis through singing, and the sINgSPIRE Virtual Choir.

About the style show

Rare by Design will host The Style Show: A Runway to Empower on Saturday at the Hilton Garden Inn Downtown, 201 E. Eighth St. Tickets are sold out, but you still can support the effort through its online auction at e.givesmart.com.