The aching in her leg went on for years, through elementary and middle school. In high school as a member of the Junior ROTC, the pain became so excruciating that Victoria Brooks couldn’t sleep at night. Instead she would lie away and sob.
At first, doctors dismissed her malady as what they called normal growing pains. Later they thought it was runner’s knee and recommended physical therapy. It wasn’t until 2017 that Brooks received the diagnosis of polyostotic fibrous dysplasia, a rare disorder in which the simplest of movements result in hairline fractures in affected bones.
“They believe that whenever you have these fractures, you’re supposed to grow back bone, but they believe it grows back as fibrous tissue, which is very brittle,” says Brooks. “I was getting so many fractures in my femur that they were worried it was going to snap. So, to replace it, they took out my entire bone from my knee up [and] I have a metal rod.”
Now, because of the hardware in her body the Berea College student cannot run, and walking long distances or navigating stairs can be difficult even with the use of a cane. She is one of the more than 850,000 Kentuckians who live with a disability.
“People… picture someone in a wheelchair permanently, or picture someone with a cane or crutch permanently, and disability is not that,” says Brooks. “It could vary from not needing an assistive device at all to needing one permanently.”
Working Towards Full Participation in and Contributions to Society
Disabilities can include a range of physical, neurological, cognitive, and immune system disorders that interfere with daily activities. As medicine’s understanding of the underlying conditions has evolved, so has the language to describe individuals who are affected. Among people with disabilities, some prefer what’s known as person-first language, such as “a man who is visually impaired,” while others want their disability at the front, such as “a blind man.”
“When you’re not sure, you ask,” advises Johnny Collett, deputy director of the University of Kentucky Human Development Institute (HDI). He says he defaults to person-first language until the individual tells him otherwise.
“Disability is a part of a person’s identity,” says Collett. “It’s not all of their identity, it’s not all that encompasses them as an individual, but it is an important part of their identity.”
Established in 1969, HDI is part of the state’s Developmental Disability Network. Collette says the institute has a staff of 300 people and has more than 70 ongoing projects.
“Our vision at HDI is the full participation and contribution of all people with disabilities in all aspects of society,” he says. “We want to figure out together how to find some solutions, and let’s advance efforts that build inclusive communities that address those type of inequities, and that really improve the lives of everyone who experiences a disability across the life span.”
Gov. Andy Beshear. like Gov. Matt Bevin before him, declared Kentucky an employment-first state, which Collette says means that the primary option for people with a disability is competitive and fully integrated employment.
But Collett says college graduates who have a disability are seven times more likely to be unemployed than graduates without an impairment. He says Kentucky should set the example of what a truly inclusive workforce can look like.
Because a disability can occur at any age, HDI is researching ways to help adults with an impairment stay on the job through an initiative called RETAIN.
“This is an effort all about supporting employers to retain valuable talent and… to support employees to retain their worker identity,” says Collett.
In partnership with the Kentucky Education and Workforce Development Cabinet, RETAIN focuses on helping employers provide customized supports like assistive technologies and universal design to enable employees with a disability return to work sooner and stay on the job longer. Collett says the project has already served about 200 individuals and trained an additional 1,110 people. In its second phase, Collett says a $21.6 million grant from the U.S. Department of Labor will help RETAIN will go statewide to assist more than 3,000 people over the next four years.
Seeing Disability as a Blessing
Once she graduates from Berea College, Victoria Brooks wants to work in robotics, a field she says she’s been interested in since sixth grade. She’s also committed to helping others navigate any impairments they may have.
“For people that do have disabilities, I want to say you can do anything you put your mind in,” she says.
Heeding her own advice, Brooks has found ways to do things she has most wanted to do, like taking a tandem skydive jump and going on a two-day backpacking trip. She says she doesn’t want her bone disease to stop her from checking items off her bucket list.
“It was hard, it was tough, at times I wanted to give up but I just persevered,” says Brooks. “That’s what it’s about: You just have to really put your heart to it and then you can accomplish it.”
Most of all, Brooks says she wants people to know that a disability isn’t something to be pitied or viewed as a curse. In fact, she says she sees her condition as a blessing.
“I get to be a voice to other people out there and I really get to showcase that having disabilities isn’t one thing – it doesn’t fit into a box,” she says. “It can be different for everybody and I’m really happy to be a part of that.”