Nurses With Disabilities: Another Minority Group

by Ruth Carol
MinorityNurse
People with disabilities are one of the most underrepresented voices in nursing. But like nurses of color, they have a lot to say about overcoming discrimination and barriers to take their rightful place in the profession.

Some people who dream of nursing careers are told they will never make it through nursing school. Some nurses who hear about a potential dream job are told they won't even be considered a candidate for the position. Some are even told they have no business pursuing or continuing a career in health care altogether.

Although many of these nurses are not members of racial or ethnic minority groups, they are still a minority within the nursing profession. They are nurses with disabilities.
"[Nursing schools and employers] see a person with a disability and consider us to be damaged goods. They think: 'What could this person possibly be able to contribute?'” says Karen McCann, RN, MSN, CPNP, APN-C, a pediatric nurse practitioner in New Jersey.

In reality, McCann and other nurses with disabilities are indeed contributing to their profession and enjoying successful careers. But for many of them, there were major barriers to be overcome along the way.

"The biggest obstacle is attitude,” explains Martha Smith, coordinator of the Health Sciences Faculty Education Project at the Oregon Health & Science University in Portland. The federally funded project's goal is to increase the retention of students with disabilities in health sciences programs by educating and training faculty to better understand these students' needs.

"Historically, the medical model concerning disability implies that the person needs to be fixed,” Smith continues. “Particularly if the disability is visible, the immediate thought is that this person needs to be taken care of or needs an intervention, rather than this is a healthy person who also has a disability and who can be a competent health care professional.“
Martha_Smith

Because of the long-standing myth that health care providers must be “physically perfect,” the question on everyone's mind, whether verbalized or not, about a nurse with a disability is: “Is it safe to have you caring for patients?” Nurses interviewed for this article agree that doubts about whether a nurse with a disability will be able to provide safe, competent care are common across the board—from nursing faculty and students to physicians, nursing peers and even patients.

As one nurse comments, “If I make a mistake, [people assume] it's because of my disability and suddenly I'm no longer safe. I don't get a second chance, because the safety issue automatically kicks in.“

An Educational Irony
Nurses with disabilities often encounter these prejudicial attitudes well before they enter the workplace. It begins in nursing schools-which some experts believe are actually harder for nurses with disabilities to get into since the passage of the Americans with Disabilities Act (ADA) of 1990.

Designed to prohibit discrimination against individuals with disabilities seeking admission into educational institutions, the Act allows colleges and universities to develop a list of “technical standards”—abilities that a potential student must possess to succeed in the program. (Similarly, the ADA's employment provisions let employers create lists of “essential functions” that a job applicant must be able to perform in order to be hired for a particular position.)

Many nurse educators say these lists allow potential students to know what is expected of them in the program, explains Candy Moore, RN, MSN, associate professor in Health Professions in the Nursing Department at Elgin Community College in Illinois. But, she argues, when academia uses a cumulative “wish list” of functional abilities as a guideline for formulating technical standards, it limits entry into the profession—the exact opposite of what the Act had intended.

Furthermore, because these technical standards can vary from program to program, nursing students who sit for the same licensing examination are potentially subject to different standards.

Another defense of technical standards commonly put forth by nurse educators is that they will assure safety in the workplace. But Moore doesn't buy this argument either. In work settings, she points out, essential functions should be specific to the actual job that a nurse has or is seeking.

For example, a critical care nurse may need to be able to see the EKG monitor, perform two tasks with two hands at the same time and run to a patient's bed, she says. “But should a nurse in nursing informatics be required to do all these things? No, they would not be essential functions for that job description. Yet both of these people are nurses and we need both in the profession.”

Still another rationale used to support technical standards is that in order to teach a student or patient, a nurse needs to be able to do everything that could potentially be taught, explains Beth Marks, RN, PhD, assistant director of the Rehabilitation, Research and Training Center on Aging with Developmental Disabilities at the University of Illinois in Chicago. “But if you extend that line of thinking to a logical conclusion, then how can a nurse who doesn't have a disability teach a person with a disability?” asks Marks, who is a nurse with a disability.

Marks believes that discrimination against individuals with disabilities—or “ablism”—is so pervasive and systemic in nursing schools that students are often forced into choosing not to disclose their disability status. This again is ironic, because it effectively denies them access to accommodations, which they have a legal right to obtain under the ADA.

"There is a risk and consequences to disclosure,” agrees Donna Maheady, ARNP, EdD, a pediatric nurse practitioner in Palm Beach Gardens, Fla., and adjunct assistant professor in the College of Nursing at Florida Atlantic University in Boca Raton. She is also the founder of ExceptionalNurse.com, a Web site for people with disabilities in the nursing profession.

For example, Maheady says, “If an education program has precise measurable guidelines for physical attributes that are necessary for admission, such as the ability to hear a patient call for help, and you put down on the application that you have a 50% hearing loss, the program may not accept you.“

Pam Rathbone, RN, MSN, WHCP, a woman's health care nurse practitioner in Portland, Ore., didn't disclose that she had attention deficit and hyperactivity disorder (ADHD) when she was seeking her BSN degree in 1980. “I didn't want to tell anybody. I was afraid I would be kicked out because there's a stigma attached to having a disability,” she remembers.

Instead, Rathbone quickly learned special studying skills that enabled her to block out her hyperattentiveness to activities going on around her. Upon her return to graduate school in 1990, she revealed her ADHD to the faculty. Although her advisor told her she probably wouldn't make it through the program, Rathbone graduated magna cum laude.

Similarly, when McCann went back to school for her master's degree, one year after a work-related injury left her with permanent nerve damage in her legs, arms and face, she was told by faculty at one state university that she wouldn't be able to finish the program and therefore wouldn't even be considered for admission. Even worse, the faculty at another state school informed her that nurses with disabilities have no business returning to work. Faculty at a third school told McCann that she would be a liability; however, they agreed to review her credentials and she was admitted to the program.

"Once I became a student there, the faculty was very supportive,” relates McCann, who as a part-time student graduated at the top of her class in 2000. “If I needed more time to do clinicals because I wasn't able to keep up with the other students, or I needed to take breaks and sit, they were more than happy to make those accommodations.” Although such special arrangements can sometimes bring resentment from the rest of the class, McCann never ran into any problems with fellow students.

Breaking Down the Barriers
Once they graduate from nursing school and enter the “real world,” nurses with disabilities face a whole new set of challenges. While the ADA's requirement that employers make “reasonable accommodations” to eliminate any barriers that would prevent an employee with a disability from performing his or her job has been criticized as vague and confusing, many health care employers are making a concerted effort to accommodate nurses with disabilities.

However, such efforts still have a ways to go, advocates for nurses with disabilities maintain. For example, says Smith, while hospitals and clinics are required by the ADA to have wheelchair-accessible bathrooms for the general public, nursing stations are notorious for not being accessible.

In some instances, this can be resolved by moving charts, which are typically placed high up, down to lower shelves, or to lower hooks if they hang by the patient's door. Audio pagers can be replaced with vibrating pagers to alert nurses with hearing loss that they are needed. Additionally, new technologies, such as amplified stethoscopes, automatic blood pressure cuffs and digital thermometers, have helped level the playing field for nurses with disabilities.

Kristi Reuille, RN, BSN, a graduate student at Indiana University School of Nursing who has a 35% hearing loss, recalls getting her first amplified stethoscope while in nursing school. “I was concerned about whether I would be able to hear using a regular stethoscope because my hearing loss is in the low tones,” she remembers. “Getting an amplified stethoscope helped build my confidence that I wasn't going to harm a patient by not hearing something. If I ever had a question about what I heard, I would ask a colleague to make sure I wasn't missing anything.”

The pager system used at the hospital where she worked was helpful, Reuille adds, because it decreased the background noise level on the unit, making it easier to hear her patients. “It was done mostly for patient comfort,” she says, “but it worked well for me because the background noise, especially when you're trying to talk one-on-one, is very distracting.“

McCann, who is currently the clinical educator for Pediatrics at Monmouth Medical Center in Long Branch, N.J., says it took her a full year to find a job that would accommodate her. For starters, the facility was willing to hire her an assistant. This enabled McCann to work part-time, which was necessary because she can't physically work a full-time job. She also has the autonomy to set her own hours. “If one day I'm not feeling well,” she explains, “I can shorten that work day and work longer the next day.“

Her office is located next to the pediatric floor so she doesn't have far to walk, continues McCann, who uses a cane. She has a special chair that provides extra lumbar support and a computer keyboard with ergonomic padding. She is still trying to scout out the best stethoscope for her needs, since the amplified ones can't be used with hearing aids.

In addition to benefiting from special technology and equipment, nurses with disabilities often develop their own creative strategies for circumventing workplace barriers, notes Maheady. For example, a nurse with a hearing loss who has difficulty hearing a monitor that beeps can position the device so that he or she can see the monitor's flashing light. The nurse may also check more frequently on patients and stay in close proximity when speaking to them.

Rathbone's biggest on-the-job obstacle is not a physical one. “It's organizing my paperwork,” she says. “Patient charts are a nightmare.” She solves the problem by using templates for charting notes and doing flowsheets, and by generally surrounding herself with people who are meticulous about doing paperwork.

Whether Reuille consults with a peer about what she heard through the stethoscope or Rathbone asks for assistance with patient charts, it's all part of the teamwork that is essential for any nurse's survival in a busy, fast-paced workplace. “You have strengths and weaknesses, and your floor- and clinic-mates also have strengths and weaknesses,” says Smith. “If you're doing something in an area that you're weak in, whether or not you have a disability, you're probably going to ask a colleague to double check it.“

Celebrating Strengths
Many nurses with disabilities work in professional areas that capitalize on their strengths. For example, they have become nurse educators like McCann, or have moved into administrative roles. They do telephone triage, conduct in-service educational programs, perform case management, teach at nursing schools, work as consultants for insurance companies, work for poison control programs, do home health visits and more.

"There are a million ways to use your nursing knowledge,” says Moore. “You can work in different settings all over the world, with different age groups, or with specific patient populations, both ill and well. The goal in the nursing profession has always been to match the strengths of each individual nurse to a specific role.”

One unique strength that many nurses with disabilities can bring to the table is personal insight into what it's like to be ill and hospitalized. As McCann notes, “I'm not only a nurse and nurse practitioner, I've also been a patient who has been put through the wringer. I've lived through the nightmare of fighting insurance companies and dealing with doctors who really don't care.” As a result, when McCann hears a doctor say that he or she doesn't have time to explain something to a patient, she urges them to make the time, reminding them that the patient is their number one priority.

Nurses with disabilities can also offer special skills, such as lip-reading and sign language. Reuille says that because she is able to read lips, she can understand patients who talk very softly or can't speak because they have a tracheotomy tube in their windpipe—unlike some of her co-workers. Another nurse with a hearing disability who reads lips says her patients often comment that they know they are getting the best care from her because she is always looking at them and paying attention to what they're saying.

Contrary to popular belief, most patients seem to connect well to a health care provider who is not physically perfect, adds Smith. “The patients have an immediate sense that the nurse with a disability will understand them because they've been through it, too.“

She cites the example of a nurse acquaintance who works in rehabilitation. This nurse, who has paraplegia, is the most sought-after nurse in the unit because patients know she has first-hand knowledge of what it's like to receive rehab treatments. “The patients can ask their physician, but they figure 'why not talk to someone who really knows?' The patients really tune into that,” Smith explains.

Go For It
In its fall 2000 issue, Minority Nurse published a letter from Victoria Christensen, who at that time was a nursing student in the BSN program at Washington State University. “As a cultural minority, I have never felt represented by Minority Nurse,” she wrote. “I have paraplegia and use a wheelchair for mobility. As I read the articles in your magazine, I often substitute the word 'disability' whenever any word denoting minority is used—and it is noteworthy that it fits the context of the article perfectly in about 99% of the cases.”

While not every reader would agree with that statement, nurses of color and nurses with disabilities do have many things in common. Both groups are discriminated against and judged on factors that are irrelevant to their ability to provide quality patient care. And they both share the challenge of having to overcome prejudice in nursing schools and the workplace by “proving their worth” based on others' preconceived notions.

In addition, both ethnic minority nurses and nurses with disabilities can be powerful role models to show other people like themselves that they too can achieve success in the nursing profession. “People with disabilities have virtually no opportunity to see role models,” says Marks. “Only in the past several years have we begun to see individuals with disabilities in the media and the work environment.“

Karen McCann encourages anybody with a disability who wants to pursue a nursing career to “go for it” and not let themselves get discouraged by the ignorant or prejudiced attitudes they may encounter.

"My experience has been that people tend to put more limitations on you than you already have,” she cautions. “They think that just because you have a disability, you can't do anything. But don't let someone else make that decision for you. Even if you have difficulty ambulating, there isn't any acceptable reason why accommodations to the work environment cannot be made to make it disability-friendly so that you can do the job.“

Reuille agrees. “I can envision someone in my situation thinking it is not possible to be a nurse,” she says. “But it is possible. There may be some practical issues that need to be worked out, but you can do it.“

Ruth Carol is a Skokie, Ill.-based free-lance writer specializing in health care issues.