Circa 2006
In the midst of a national nursing shortage, many nurses who are able to work and want to work are being denied the opportunity. They are being pushed out of jobs and turned away from unfilled positions, all because they have disabilities.
Donna Carol Maheady’s new book, Leave No Nurse Behind: Nurses Working with disAbilities, tells the stories of 11 nurses with disabilities ranging from multiple sclerosis to back injury, bipolar disorder, HIV, vision loss and profound deafness. Through determination in the face of stigma and discrimination, these capable individuals help demonstrate that many nurses with disabilities have the skill to successfully fill the jobs that need filling.
Maheady’s book serves as a practical guide for nurses living and working with disabilities and for students with disabilities pursuing careers in nursing. For hospital administrators, human resource personnel and nursing educators, it challenges them to think in a less stereotypical fashion about nursing positions and demonstrates that shutting nurses and nursing students with disabilities out of the profession only does a disservice to the patients who need them.
In the following excerpt, Sheila Sirl, RN, discusses her career, before and after developing multiple sclerosis.
I’ve talked to many nurses who say they always knew they wanted to be nurses—that they never considered being anything else. For me, nursing was one of about a million different things I wanted to do. I didn’t even enter nursing school until I was in my 30s. But I can look back to my childhood and see the women who, for me, defined what a nurse is. Three of my favorite aunts were nurses—all different, but all alike at the same time. They had a concern for others, a sense of humor and a two-feet-on-the-ground style of common sense. Once I started nursing school, I knew I had found the vocation that would define me, no matter what I did to earn a living.
I was raising three children—all teenagers—when I was going through school. My husband was great. He remained patient as I put in 10 to 12 hours of class and study each day. One room of our house was even designated the study room. My study group would spend hours huddled inside, calling out for pizza and often working far into the night. I loved it all: the learning, the doing and sharing it with others who wanted to be nurses as much as I did.
When we needed to spread out our books, we spilled out into the dining room and sunroom. My family withstood it all. And when it was done, my husband and daughter were on the auditorium stage to present me with my pin at the capping ceremony. My two sons were in the balcony doing a two-man wave.
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No matter how frustrating my job became on any given day, I never questioned my decision to become a nurse. I worked in hospitals, home care and long-term care. I loved each setting. My specialty became working with people affected by Alzheimer’s disease and other forms of dementia. Eventually, I moved into nursing management, but I stayed in settings where I could continue to have plenty of patient contact.
I truly loved what I did. It became not just what I did, but who I was. I believed that my career would end only when I was ready to end it.
The career I had worked so hard for and so loved began to unravel with a bout of sudden muscular weakness. I had previously overlooked some symptoms that I now know were significant. But the weakness couldn’t be overlooked.
I called my internist when the weakness was discernable but still benign. I was driving in to work and could barely make it. My hands would periodically drop off the wheel and onto my lap—though fortunately never both at the same time. I phoned my doctor as soon as I got into my office. I was scared. She insisted I get someone to drive me over immediately and warned that I should be prepared to go into the hospital. Her instructions only scared me more. I had hoped to hear her chuckle and tell me to relax.
I spent three days in the hospital, but the medical team had no idea what was wrong with me. Although I never regained my full strength, I began to feel a bit stronger. The neurologist gave me the old standby answer: “Maybe it’s stress.”
I just wanted to go home and go into denial, so I agreed. In all fairness, mine was a stressful job. So I handed in my resignation. I left a job I loved more than any I’d ever had. I thought that if I went back to working as a staff nurse, without management responsibilities, I would be back to normal in no time.
I went through two more jobs in the next year, all the while getting worse. Finally and reluctantly, I left nursing altogether. By that point, I needed a cane to walk without falling, was fatigued all the time and still had no idea what was wrong.
Even without the stress of work, the symptoms continued to pile up. When I began experiencing Lhermitte’s sign (tingling down my back when I tipped my head forward), the doctor sent me to another neurologist. He performed what was perhaps the worst neurological exam I’ve ever had—and I’ve had plenty—then asked me how my marriage was. Needless to say, I was furious. I hadn’t asked for this—I hadn’t even asked to see him. By the time I got home, though still angry, I used my visit with him to go into full-scale denial.
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Things were a bit easier when I wasn’t working. I even mustered the energy to open a bookstore and coffee shop on the village square with my husband. It was a fun venture, and with our daughter-in-law acting as manager, I could spend much of my time just enjoying the customers and doing what work I could.
But eventually the symptoms returned. When they did, I broke down and went back to the internist. I warned her that if she sent me to another idiot I’d just go home and wait to die, and it would be on her head. I could always muster a traditional melodramatic Irish threat when it was needed.
The neurologist she sent me to this time told me I had multiple sclerosis (MS). There was no beating around the bush. He sent me for tests to confirm it, but he was confident in his diagnosis.
I had primary progressive MS, a form of the illness where symptoms accumulate rapidly in a steady progression. In less than a year, I was using a motorized wheelchair. I was approved for Social Security disability on my first application. As much as I needed the money, I hated that it carried with it the title disabled .
As difficult as it was to admit I was really disabled, I was so weak and fatigued those first couple of years that I could barely take care of myself. We had to close the bookstore. I couldn’t imagine going back to work, let alone wonder if there would be a place for me to return to should I ever choose to try.
Still, I didn’t let my nursing license lapse. I used courses by mail to keep up with my continuing education, and I faithfully renewed a license I didn’t know if I’d ever need again. I couldn’t hang on to my driver’s license quite as easily, and for the first time since I was 16, I didn’t have the freedom to just pick up and go.
It has been said that the disability minority is one of the few that anyone can suddenly join at any time. No matter how healthy people are or how many miles they jog each day, everyone is just one drunk driver or one MRI away from becoming disabled. I was now a part of that community, like it or not.
I don’t think my self-image ever suffered from the physical changes, but the loss of a career I loved—especially when I had no idea if I would ever be able to work again—did a real number on my ego.
I went through the usual MS routine. I tried the injectable medications with little success, had periodic rounds of IV steroids, and went through a million different treatments for symptoms until the right combination was found. My whole life seemed to revolve around my health. I adapted to losses, then readapted when things changed again. Sometimes I slipped so quickly that I wondered each night what the following morning would be like. Will I wake up and be unable to move out of my bed? I thought. I didn’t see an end to the losses. Without my faith in God and the support of a spectacular family, I don’t know how I would have coped.
Then something happened. I realized one day that I hadn’t really lost any ground in more than six months. Some of my fear was slipping away. Maybe I wouldn’t end up in a nursing home after all. I also started to feel more energy. I actually felt that I could be productive again and began to look beyond the concerns of my body to a bigger world. When my health remained stable for almost a year, I decided it was time to do something. I realized I might stay the same for the next 20 years. I didn’t want to look back and see that I had wasted two decades simply waiting to get worse.
I called the Social Security Administration and told them I wanted to retrain and go back to work. Looking back, I find it interesting that at the time, I never even considered the possibility of using adaptations to continue working as a nurse. Now, several years later, I am fighting against that very attitude in the healthcare industry.
I was sent to the Bureau of Vocational Rehabilitation to develop an educational plan. After an initial informational meeting, I was assigned a case manager, a lovely lady named Nina, who proved to be very encouraging and supportive. The community college from which I had received my nursing degree had recently sent out letters to the nursing graduates encouraging them to come back for a legal nurse consultant certificate program. I had always been interested in law, so that was the path I chose.
Nina was somewhat doubtful after reading my medical reports. She wondered if I could do it. I found myself in the unexpected position of having to convince my vocational advocate that I could come off disability payments and go back to work. No one knows what will happen tomorrow, and there was no way I could guarantee I would remain healthy enough to complete my schooling and go back to work. But then who can, with or without MS? All I could guarantee was that I wanted to succeed, and I would work as hard as I could to do so. Even as I worked to persuade her, I heard a voice in the back of my mind saying, “Gee, I hope I’m right.”
I convinced her and was enrolled by the next semester. I arranged to use the county dial-up bus service to get to and from school. It dawned on me the first day I went to classes that it had been two years since I had gone anywhere without a family member. My daughter called that evening to see if I was okay. I felt like I was starting kindergarten all over again—only now my daughter was hovering over me like a mother hen.
I quickly fell into a routine. Nothing is as easy when you’re doing it from a wheelchair, but I took figuring out ways to do things differently as a challenge. To this day, the creative problem solving that goes with adapting to life on wheels in something I enjoy.
The more I did, the more I felt ready to try. I’ve always been a reasonably confident and outgoing person, and as I got past the initial strangeness of functioning from a wheelchair, my confidence began to return. I’ve even found many advantages to my situation. I love kids, and now that I’m on their level, I find they love dealing with an adult who always looks at them eye-to-eye. I never have to worry about ironing the back of my shirt or jacket. I frequently get to sit at the head of the table in business settings because it’s usually the easiest choice—and I must admit, I love the feeling of power in that position.
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I know some of these observations may sound silly, but they reflect an attitude change that was essential for my survival. I knew I had to look at reality and deal with it. I couldn’t change my circumstances, but I knew I could keep from letting them change me for the worse. People ask how I can remain positive. My answer is always, “Would grousing and complaining change my circumstances?” Of course not. Then I’d just be a cranky, defeated person in a wheelchair. I’d be a victim of MS. Instead I choose to be a woman who happens to have MS and who refuses to be a victim of anyone or anything.
One of my biggest attitude changes needed to be in the area of adaptive equipment. I’ve often heard people say, “I’ll do anything not to be in a wheelchair.” I’ve even thought it myself. This can be a productive attitude when there is something you can do to keep yourself walking, such as after a stroke or accident. However, when the condition that makes a wheelchair necessary can’t be changed, it can be a self-defeating attitude.
At the time when I was again moving out into the world, I probably could have lived without a wheelchair. However, I would have been limited to moving from my bedroom to the family room and into the bathroom when it was necessary. There are prisoners in maximum security who get more freedom than that. I never could have gone to school or work under those circumstances. Now I can look at my adaptive equipment as no more or less than the tools I need to remain active and independent; it’s no different from the glasses I’ve been wearing since I was 8 years old.
I had to find the right combination of supportive equipment and the routine that would allow me to maximize my available energy. I learned that procrastination, which comes so naturally to me, had to be avoided at all costs. When you can’t be sure how much energy you will have tomorrow, you have to do as much as you reasonably can today. I always had papers and research done early. I never knew if I would have a bad day or two and wanted to be prepared for that. Actually, my energy level remained pretty good throughout my schooling. Pacing myself kept me from crashing.
When I was almost ready to go back to work, it dawned on me that I could probably drive with hand controls. It was time to replace our lift van anyway. I mentioned this to my doctor, who immediately referred me to a driving clinic. There, a great guy named Terry conducted an evaluation, determined there was no reason I couldn’t do it and trained me to drive again. At first, it felt odd to use my hand to accelerate and brake, but before long it became as natural as driving the old way had been.
I worked with the Bureau of Vocational Rehabilitation to have the state pay to adapt my van. A few years earlier, my husband had returned to work in the telecommunications industry so we could preserve our retirement account. But he was laid off after the September 11th attacks, leaving us in tight financial circumstances. We were living on my humble Social Security checks, those retirement funds we couldn’t avoid tapping and credit cards. Paying for the van would have been a stretch.
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My rehabilitation counselor was great, and I got my van in time for my job hunt. I do admit, though, that my being a nudge didn’t hurt. A hands-on approach is key to getting the system moving for you. I would frequently call and find out where things stood. If they were at a standstill, I’d find out where the problem was, and then I’d call someone to push the process along.
I can’t stress enough the importance of taking control of your destiny in this respect. When you have to adapt your life to a major change brought on by a disability, you have to deal with hoards of people, agencies and providers, and most of them are completely overwhelmed. It isn’t that the people you deal with don’t care. The majority of them do. But like so many of us, they are doing the job of two or three people. Let them know you appreciate their efforts, but also be assertive enough to make sure things are getting done.
So there I was, ready to begin a career as a legal nurse consultant, once again an independent driver. My husband said I was acting like a 16-year-old with her license for the first time. I would run any errand just to get behind the wheel and go.
For the first time in many years, I had the experience of sending out my resume. After so many years of an overabundance of unfilled nursing positions, I forgot how it felt to have to actually go out and look for work.
My rehabilitation case manager gave me the names of two vocational placement specialists to choose from. I went on gut instinct and chose Pat, who turned out to be a wonderful help. She coached me on interviewing. We focused especially on those aspects of the process that related to my disability. If you have an invisible disability, you have no obligation to reveal it, as long as you can do the job you’re applying for. But when you come rolling in on wheels, you can’t very well keep it hidden.
Pat and I touched on all the things that could potentially put off a prospective employer. Even though applicants with disabilities are protected by the Americans with Disabilities Act (ADA), it can be hard to prove someone didn’t hire you because of your disability.
Each person has to find what works best in his or her situation. For me, it worked best to address any concerns the employer had up front. When I was setting up an interview, I would let the individual know I used a wheelchair. That way I could find out about the accessibility of the building as well as give the person a few days to get used to the idea. I didn’t want the people interviewing me to be so distracted by the surprise that they couldn’t concentrate on getting to know me. It also gave interviewers time to formulate questions relating to my circumstances so I could answer them during the interview, rather than having questions come up after I left.
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As trite as it may sound, when you believe you can do something, others tend to believe you can as well. For that reason, much of my preparation for finding a job was convincing myself that I could do whatever I needed to. In reality, there is very little I can’t do. I just have to find new ways of doing it.
Because my resume contained both my nursing education and experience and my legal nurse consultant education, I received calls related to both. Even though I was excited about everything I’d learned about law, I didn’t rule out any leads. But almost universally, when recruiters from the medical field heard I used a wheelchair, their interest in me quickly cooled. I felt badly about this. Most of the jobs were in management and were easily within my capabilities. I believe this response may reflect the tendency for those in the healthcare field to see anyone with a disability as sick and in need of care, not someone who can give care.
I finally got a call from an attorney who was not the least deterred by my wheelchair. He needed a legal nurse consultant, and he needed one quickly. Because he was interested in having someone who would work as an independent contractor, the distance between my home and his office didn’t put me off. I would be able to work at home some days, taking in other work as it came along. I accepted his offer, and I haven’t regretted it yet. I have a great deal of contact with clients, which gives me the opportunity to interact with people—an aspect of nursing I had always loved. And since much of my work with them involves solving problems or advocating, my need to help others is met.
Traveling around downtown Cleveland, where my job often takes me, is an interesting challenge. I have a file case on wheels. I strap my laptop case on top of that with a bungee cord, and then I push the whole thing ahead of me to get from the parking garage to the office. I lovingly call this device my crap on wheels. Needless to say, people notice me. They also give me a clear path. But I’ve never been shy, and I rather like challenging their image of how a person can deal with life.
I keep my RN license up-to-date, and if the time and the opportunity were right, I would certainly welcome the chance to get back into a traditional bedside nursing position. I also feel strongly about the need for the healthcare industry to find a place for nurses who have disabilities.
All the nurses I’ve met who have disabilities say they’ve learned a lot about how to care for people from what they’ve gone through. These nurses are a valuable resource, and healthcare is poorer for their loss. So often, the barriers keeping these nurses out of jobs are arbitrary.
The ADA states that a person cannot be denied consideration for a job provided that he or she can do the essential functions of the position. It also states that the employer is responsible for providing reasonable accommodation for the person to be able to do the job. But in the healthcare industry, job descriptions often imply essential functions that the employee would never in reality be called upon to do. The result is that people who could do the job are excluded for no good reason.
The description for the post of director of nursing in a large hospital may include such requirements as the ability to perform CPR or to provide bedside care. Because these duties sound like noble expectations, they often go unchallenged. But in reality, one would be hard pressed to think of a situation in which those tasks would actually be a part of the nursing director’s day in a large facility.
It can be hurtful to hear the lament of the healthcare industry that it can’t find enough nurses, when you are there, ready to work but found not good enough anymore. With a little creative thinking, many nursing positions could be filled. The necessary accommodations are often much simpler than employers think. Perhaps flexible scheduling in situations where direct patient care is not involved would fill those empty management positions. Since most healthcare settings are—or certainly should be—physically accessible, workspace adaptation may involve little more than rearranging furniture.
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There is even a place in direct patient care for many nurses who have disabilities. In settings that are more residential than clinical, is there really a reason why a nurse can’t work from a wheelchair? Perhaps it would be a problem if there were not other medical personnel on the floor to handle the rare emergencies that might occur. But often an individual using a wheelchair can do anything he or she is called upon to do, if allowed to try.
When I look back on the jobs I did as a nurse, I can honestly say that with some simple accommodations, I would still be able to do most of them. I could still assess patients, pass medication, do patient teaching and prepare care plans, all from my wheelchair. Many settings use care teams. A creative assignment of duties within a team could provide a much-needed registered nurse to a facility, as well as a much-needed job for a nurse who has a disability.
All nurses, whether they have disabilities or not, are individuals, with their own strengths and weaknesses. In hiring, employers need to look at all potential employees that way, without making assumptions based upon the label of disabled. If an individual has a physical or mental health condition, ask how that person will handle the aspects of the job that are of concern.
Nurses with disabilities who are looking for work also have a responsibility to examine the jobs they are seeking. They should look at what is involved and then realistically assess their ability to do the work. It’s important for the nurses to go in with a good idea of any accommodations they may need, as well as a good idea of how they will deal with any special challenges. Perhaps the most important thing nurses who have disabilities can do for themselves is to form their own selfimage. Don’t allow others to define you, and don’t assume you can no longer do something until you’ve explored all the possible ways you may be able to accomplish it. Finding a new way to do an old task and discovering some way to overcome a limitation can be a wonderfully creative challenge.
I had a bumper sticker on my wheelchair for a while that read, “Get Over It.” It’s a phrase I was famous for while raising my kids. Following my diagnosis, it became a phrase I needed to keep saying to myself. It is so easy to fall into the trap of self-pity and to spend countless hours reviewing what you’ve lost, instead of thanking God for what you have. Sometimes you have to just kick yourself in you mental behind and get over it. It’s not that it makes you more pleasant to be around, or that it makes others more comfortable, or any other selfless reason. Do it because you will never be able to get on with your life if you don’t.
I’ve come a long way from that fearful place I was in when everything seemed to be unraveling around me. My faith, my family and some wonderful support people have made a huge difference in my life. I can now honestly say that my MS is no longer the looming monster it initially was. When I’m tempted to worry about what will happen tomorrow, I remind myself that even before I had MS, I didn’t know what would happen tomorrow.
Sheila Sirl, RN, lives outside of Cleveland, Ohio, where she was born and raised. Married for 35 years, she and her husband have three children and seven grandchildren. Sheila has worked in hospitals, home care, longterm care and parish nursing. She can be reached at ss***@ad******.com
The above excerpt was adapted with permission from Leave No Nurse Behind: Nurses Working with disAbilities, a collection by Donna Carol Maheady, ARNP, EdD, published by iUniverse, copyright 2006 by Donna Carol Maheady. Dr. Maheady is a pediatric nurse practitioner and an adjunct assistant professor in the Christine E. Lynn College of Nursing at Florida Atlantic University. She is also founder of the Internet resource site www.ExceptionalNurse.com
