Defying Disability

Mister Rogers, famed children’s television host, once said that the only “real disabilities” in life are disappointment, bitterness, loss of hope and lack of joy.

Kimberly Hill faces incredible physical challenges—but “disabled” does not accurately define her attitude toward life at all. Hill is cheerful, positive, and highly educated. She has a successful career helping people through emergency situations. And she manages this with the use of one thumb!

Hill was born with a genetic disorder that weakens her muscles, including those that are used for swallowing and breathing. Because of Spinal Muscular Atrophy (SMA) Type II, Hill has little use of her limbs, is on a ventilator, and uses a tracheostomy and feeding tube.

“My life expectancy was two years,” Hill said. “They missed that by a few miles! I’m 32 and proving people wrong about what I can do. In my condition, everything I do is a challenge, but living my life the best way I can has always been my motivation.”

Unwilling to live a life of inactivity, Hill attended Oklahoma State University to complete a degree in Political Science. “I am a total nerd. I love learning about anything and everything! I was drawn to political science because I’ve basically been a disability advocate my entire life.  We’ve seen how ugly politics can be, but we seem to have forgotten how much it helps people—and that is what I was drawn to,” Hill said.

Hill also calls herself a “weather geek.” In the aftermath of the 2013 tornadoes, she volunteered to help people communicate after the disaster through social media.

“I realized that I could specifically help people with disabilities by giving them a voice in an emergency situation,” Hill said. “So, I decided to earn a master’s degree in Fire and Emergency Management.”

Although she won’t graduate until May, Hill has already landed a job in her field of study. She is the Disability Integration Specialist for the Oklahoma Department of Emergency Management—and she absolutely loves her job!

“Helping people is what I’ve always wanted. Now I get to help people with disabilities before, during and after disasters occur,” Hill said. “It’s my job to bridge the gap between emergency management and the disabled community in order to make it more inclusive for everyone. Disabled people can be unintentionally overlooked during the disaster of chaos, especially if they can’t speak for themselves. I bring a different perspective to the table so that emergency plans can be modeled around the most vulnerable citizens.”

Hill works remotely from home by using a specially-adapted home computer that she can operate with her thumb. She also has a robot that represents her at the office, which Hill describes as, “a big FaceTime on wheels that I can control from my computer at home.”

Such technological advancements allow Hill to accomplish more than expected, even if she does things differently than most people. She is very hopeful for even further improvements as doctors close in on a first treatment for her disease.

“I hope that a future treatment and cure will help me regain strength,” Hill said, “but I am OK with whatever happens. I’m an eternal optimist, and I never give up!”

Besides work, she has a busy life that includes family, friends and social media. Hill enjoys college sports and the Oklahoma City Thunder. She goes to movies, musicals and concerts, and she adores spending time with her Maltese dog, Elphie, who is named after a character from her favorite musical, Wicked.

“I have to work harder at everything I do, but I don’t really mind. Obviously there are many things I can’t do, like run marathons, but I try not to dwell on those things.” Hill said.” I love my life most of the time. I hope to start dating, because I think I have a pretty amazing life to share with someone.

Because of her work interests, Hill rallies Oklahomans to pay close attention to government decisions regarding health care, which can greatly affect those with disabilities. Someday, she hopes to get her PhD so she can further improve life for disabled people.

 “I’ve always believed that I had a bigger purpose for being here. I’m grateful that I have SMA. Yes, it’s brutal, ugly, completely devastating, and I want it completely eradicated from the planet. However, with everything that it has taken from me—which is mostly everything—it has been my greatest teacher. It has given me the worst days so that I can truly appreciate the best days.”

“Now, would I chose to have SMA if I could? Of course not, but I didn’t get a choice in the matter. I did, however get to choose to make something that is truly terrible into what I consider to be a pretty beautiful life. Now…I am ready for that cure!”

Kimberly Hill is an inspiration to anyone who takes walking, talking and eating for granted. 

If Mister Rogers had met Kimberly Hill, with all her joy, optimism and achievement, he likely would have set her up as an example of someone who took the “dis” out of the word “disabled.”

To learn more about Spinal Muscular Atrophy, visit www.curesma.org.