Many obstacles make an Oglesby family’s life challenging — but not impossible.
Nine-year-old Kylie Shourd of Oglesby was diagnosed with a traumatic brain injury at 2½ years old, and the injury resulted in diagnoses of cerebral palsy and epilepsy.
Her mother, Stephanie Bradford, said accessibility issues need to be addressed if society wants to include everyone.
There are laws guaranteeing persons with disabilities access to public accommodation, commercial facilities and state and local government facilities. But even with laws, accessibility isn’t always easy.
Many local business operators are willing to meet accessibility codes — but there have been some who haven’t been willing.
People with disabilities need to do everything people without disabilities need to do, said Cynthia Panizzi, a former independent living specialist at Illinois Valley Center for Independent Living in La Salle. IVCIL is a nonprofit organization that provides support, services and programs for people with disabilities.
“We like to go to eat, we need to go shopping,” said Panizzi, and when they go somewhere that doesn’t have accessible parking or an entrance, they notice.
When a business doesn’t meet disability-related accessibility laws and isn’t willing to work with IVCIL to follow the law, a complaint is filed to the appropriate government agency, Panizzi said.
Since 2009, she herself filed 29 complaints.
But there are businesses who want to make themselves accessible — there have been at least 17 businesses since Oct. 1, 2013, who contacted IVCIL for assistance to become compliant with Illinois Accessibility Code and/or Americans with Disabilities Act of 1990.
These requests ranged from accessible parking signs to ramps and accommodations for service animals.
One of those businesses to reach out for advice on becoming accessible was the Waltham Curling Club in Triumph.
Rachel Puckett, a past president of the club, said the club invited Panizzi to tour the Triumph site and give advice on how they could bring it up to standards. Puckett said although they haven’t made the changes yet, she said the club will be looking into Panizzi’s advice.
Accessibility for all still not a reality Kylie is 100 percent dependent on all aspects of daily living, including but not limited to feeding, dressing, bathing and playing with toys, her mother said.
“She’s always been a pretty easy-going kid; I still think she is,” Bradford said. “She’s a very happy kid, very smiley.”
Kylie makes sounds, but she can’t speak. Kylie is wheelchair dependent. She can’t walk at all or bear weight on her legs.
Kylie’s mom estimates their biggest accessibility issue in public would be a place for diaper changing.
“The baby changing tables are not big enough for a 9-year-old child, and that definitely hinders our ability to go places and to stay for very long,” Bradford said.
Currently, Kylie’s specialists have put her on a high dose of water, which means multiple diaper changes throughout the day.
Most places can’t accommodate a child of Kylie’s size when it comes to diaper changes or clothing changes, and she can’t bear weight. So Bradford needs somewhere to lay her down if she needs to change her.
“You’d actually be surprised, not even a lot of hospitals offer this type of service,” Bradford said, explaining that she has to wait until they get into a doctor’s office and use the exam table to change Kylie.
Bradford has heard from other parents that their only option is laying their child on the floor of a public bathroom.
A respectable, private place to accommodate the needs of growing disabled persons to change and dress them would help “so they can be part of the public and the community,” Bradford said.
Another accessibility problem they face is not enough handicap parking spots at businesses.
“We don’t need the handicap spots because we can’t walk that far to the building,”
Bradford said. “We need the handicap spots because we need extra room for loading and unloading.”