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Nursing resource advocates for those with disabilities

by Sid Goldwell

Staff Writer- Exceptional Nurse

Nicole Freeman began her nursing career in 1981. For the next decade, she worked at two hospials, one in Utah and one in Illinois, on a medical surgical floor, transitioning into intensive care unit, the emergency department, and eventually as a flight nurse, a position that she said was incredibly satisfying.

By the mid 1990s, Freeman began to notice a tremor in her hands. Nerves, she thought.

"I chose to ignore it. Nurses tend to ignore their own health issues," she said.

But in June, 2006, the shakes were diagnosed as Parkinson’s Disease, a degenerative disorder of the central nervous system that often impairs the sufferer’s motor skills and speech. She thought her nursing career was over. Donna Maheady told her it wasn’t.

Maheady is the founder and president of ExceptionalNurse.com, a nonprofit resource network committed to the increased inclusion of people with disabilities in the nursing profession. She is also the author of "Nursing Students with Disabilities Change the Course", winner of the AJN 2004 Book of the Year Award, available at eplibrary.com and "Leave No Nurse Behind: Nurses Working with Disabilities" available at iuniverse.com.

Her second book features Freeman’s journey to re-invent herself as a nurse who happens to have a disability. "You have to expand your definition of who is a nurse," said Freeman, who moved to Colorado with her family in 2001. For the last four years she has worked as a nurse for Care Core National, an outpatient diagnostic service management company with a branch in Colorado Springs.

"It was good to see that somebody thought I still have a use, that I can still contribute," Freeman said. She said employers should hire someone based on their skill level and experience, and not focus on the disability alone. And nurses need to be upfront about their limitations while remaining accountable for the work they can do. Freeman said she is lucky to work for an accomodating company, and they have added other nurses with disabilities to their staff.

Freeman reviews cardiology patient cases to determine pre-certification for advanced imaging services like CAT Scans and stress tests. Freeman works from home, using a specialized computer mouse. Also, because of a doctor’s note, she is allowed an additional five minutes every hour for stretching, which helps her keep working. And this spring, she will undergo brain stimulation surgery, which will ease some of her symptoms.

"Every day, I still feel like a nurse," Freeman said. "Even though I don’t see patients every day, I’m still working in the medical field. Just not in a hands-on way."

Freeman found Maheady’s web site while searching for job possibilities for someone like her. And while the two have never met in person, Freeman commended Maheady for her dedication to this cause.

"She offered herself as a resource," Freeman said of Maheady, who lives in Florida. "I give her a lot of credit. She has tremendous strength in her own life and in the lives of others."

Maheady’s book serves as both a resource and a practical guide for nurses living and working with disabilities and for students with disabilities pursuing careers in nursing. The book, published in 2006, features the personal stories of those who nurse despite disabilities such as Multiple Sclerosis, osteoarthritis, obesity, missing limbs, arthritis, bipolar disorder, depression, cancer, dystonia, retinitis pigmentosis, deafness, spina bifida, HIV and back injury.

Maheady became involved with this cause because of her daughter Lauren, 21, who has autism, mental retardation, OCD and uncontrolled seizures.

"Because of her, I became an advocate for people with disabilities," Maheady said. "I was teaching nursing and working on my doctorate in education. When it came time to do my dissertation, it was a natural direction ... to look at the nursing profession and how we support nursing students. I did my doctoral dissertation on the experiences of nursing student with disabilities."

In the process of that work, Maheady said she learned that virtually no resources existed for students or nurses with disabilities to find information related to equipment, technology, legal rights or just to make connections with other nurses with disabilities.

In 2001, a man working on Maheady’s house mentioned he also did web site design, and with his help, she launched ExceptionalNurse.com.

"Over the years it has grown in response to questions and feedback from visitors," Maheady said, adding that people have asked "Where can I find a a one-handed typing program? How can I find disability friendly employer? Can someone who is deaf be a nurse? If I use a wheelchair, can I become a nurse? Where can I find an amplified stethoscope? Scholarships?

Maheady puts the answers on the web site; she said Johnson & Johnson has been the strongest source of financial support. From the web site, Maheady found nurses with disabilities for the book, which has received positive feedback from reviewer and reader alike.

"I have a passionate interest in this topic, and felt that a book was important to provide a resource for others. There isn’t a similar book available," she said. "Countless nurses asked me if there was a book on the subject. And, many suggested that I should write a book. So I did!"

The nurses featured were willing to publicly share their stories, Maheady said. The nurses have a variety of different disabilities and backgrounds; some use service dogs, scooters and wheelchairs along with other workplace accommodations to continue a career in nursing, she said.

"They had inspirational, moving and positive stories to inform as well as provide practical suggestions for nurses and employers," she said. Some shared situations such as the inability to find employment, poor attitudes from employers and colleagues and discrimination. But Maheady said nurses have reported positive feedback from their employers, other nurses, family members and friends —— people "who just never knew the challenges the nurse faces."

"I hope the book helps nurses with disabilities to not give up on a career in nursing," Maheady said. "I also hope the book demonstrates the passion, skill and expertise these nurses have to offer health care. In addition, I hope it gives employers greater awareness regarding the potential of this often forgotten group of nurses. And finally, I hope the book inspires students with disabilities to consider a career in nursing."

Freeman agreed, saying that hope exists in many areas of the nursing field for those who face a disability. "There’s a place for you. You just have to find it," she said. "Look at what skills you do have left and what you are capable of doing."

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