‘Tiny Sparks, Mighty Flames’: Antioch mom advocates for disabled as Ms. Wheelchair Illinois USA

Libby Deichsel spent her whole life feeling that there was “something weird” with her body. When she was 34, the mother of three learned the reason.

Diagnosed with a rare condition called Ehlers-Danlos syndrome, which affects her joints and connective tissues, Deichsel had to learn to use a wheelchair and various other aids to get around. But far from surrendering to the condition, she is working to show that a disability does not prevent a woman from being beautiful and self-confident.

Deichsel was crowned Ms. Wheelchair Illinois USA last month and is preparing to represent the state in July at the Ms. Wheelchair USA national competition.

“My hope for this journey is to spread awareness, to speak, but then also to listen and to celebrate and recognize people in the good they are doing,” Deichsel said.

Deichsel, now 38, was born with Ehlers-Danlos syndrome, a disease that affects the collagen in the body and weakens joints. The condition causes partial dislocations of joints called subluxations, which can be extremely painful, as well as gastrointestinal issues, among other symptoms. Deichsel uses a wheelchair to avoid the pain caused by walking and prevent falls, she said.

She said she had struggled throughout her life with frequent sprains, bruising and joint mobility issues, but she found strength as a disability advocate after getting her diagnosis. Deichsel said she has undergone multiple surgeries and procedures to deal with symptoms and related health issues, but that has never stopped her desire to make a difference.

“(Mobility) has been definitely a gift to me, to be able to go away from just trying to survive to being able to actually thrive and participate with my kids and be more present,” Deichsel said.

Ms. Wheelchair USA is a nationwide pageant that began as a local event in Ohio. State and regional titleholders are selected virtually based on an application, recommendation letters, their pageant platform, a photo and video about themselves.

The national event in Ohio includes a two-night live-broadcast competition, interviews, an adaptable-fashion show that focuses on designs for women with disabilities and more activities, according to MWUSA founder and CEO Lowery Lockard.

“She's hit the ground running and doing a fantastic job,” Lockard said regarding Deichsel. “She's just been a joy, very professional, very committed. She had a wonderful video presentation.”

Deichsel was inspired to join the competition by her daughters, 9-year-old Felicity and 6-year-old Gus, who wanted to compete in the Lake County Illinois State Pageant. She also has a son, Asher, 11.

The girls asked their mother if it was possible for a person in a wheelchair to participate. Deichsel explained that most pageants are not accessible, but she had seen one online for people in wheelchairs. They urged her to sign up and she “fell in love with the idea.”

Felicity, who was crowned Little Miss Antioch in August, is thrilled her mother decided to compete.

“Me and Gus begged mom to compete and if she won there would be two queens in the house,” Felicity said. “I was super happy (she won).”

Deichsel is devoted to advocating for accessibility and inclusion. Over the past few years, she has met with local officials to discuss needs within the community and she has served as a member of the Antioch Park Commission for a year.

Jim Weber, chairman of the parks commission, said Deichsel has been “a great asset” to the board, using her firsthand knowledge to make recommendations to ensure parks are compliant with the Americans with Disabilities Act.

“She has a lot of positivity, and it's just amazing how open she is and how she explains things to people,” Weber said. “It’s nice to have the perspective and to understand, that way we get it right the first time.”

Deichsel’s pageant platform, “Tiny Sparks, Mighty Flames,” focuses on recognizing the significance of every step toward accessibility and inclusion. As someone with a chronic illness, she understands that it is not always possible to give 100% of oneself to each day, so small tasks such as watching a show with her kids or crocheting can sometimes be enough.

Deichsel will spend the coming months traveling to schools and organizations around Illinois to speak about opportunities for inclusion. At the end of the month, she will do a meet-and-greet with residents at Lambs Farm in Libertyville, an organization that provides vocational and residential services to individuals with developmental disabilities.

“The thing I'm most excited about is listening to people's stories so that I can learn more about better ways to love and support others,” Deichsel said.