>By June Isaacson Kailes, Disability Policy Consultant and Susan Madison, consultant
© Center for Disability Issues and the Health Professions, April 2002
Growing up, Margaret identified as a person with a disability and as a member of the disability community. She was born with scoliosis, other skeletal abnormalities, reduced pulmonary capacities, and missing the extraocular muscles which move her eyes. Her disability affects her ability to sit, stand, see and walk. She walks only short distances and now uses a wheelchair most of the time. She also has limited range of motion in her arms. Her disabilities are not progressive; they are considered a fixed condition.
Because of her disabilities, she had many surgeries while growing up and therefore, became interested in medicine as a child. She believes it's important for children and young people to know what's possible. David Hartman, an author and physician who is blind, encouraged and led her to begin thinking, "Maybe I can do it." His book White Coat, White Cane: The Extraordinary Odyssey of a Blind Physician inspired her to try for medical school.
Margaret attributes her success to her mother's vision and dedication, who she describes as "extraordinary." Her mother has assisted her throughout life. While in medical school, her mother helped her with food preparation, laundry and reading medical texts on to tape. Her mother's dedication made an enormous difference for Margaret.
After her first Bachelors degree, a psychiatrist who was testing Margaret for intelligence, told her she could name her career and that she could be anything she wanted even though she had doubts about going into medicine. Vocational Rehabilitation services gave her permission to study whatever she wanted without apologizing or explaining to others. This was the beginning of Margaret's self-empowerment and giving herself permission to be disabled.
Margaret has, through perseverance and with the help of teachers, built a meaningful career. She is focused on empowering patients by helping them understand their limitations and disability, which belong to them. Even the medical knowledge she possesses about their diseases, belong to her patients. She feels she is a conduit, imparting knowledge and information, which allow their best choices regarding their own medical treatment. She believes she must provide the information in a meaningful way so they can make the best choices for their quality of life.
Current Position: Margaret is Associate Professor of Rehabilitation Medicine (with Tenure) in the Department of Rehabilitation Medicine with a Secondary Appointment in the Department of Medicine, a Senior Fellow of the Institute on Aging, a Senior Fellow with the Leonard Davis Institute of Health Economics, and an Associate Scholar in the Clinical Epidemiology Unit of the Center for Clinical Epidemiology and Biostatistics at the University of Pennsylvania in Philadelphia.
As part of her clinical responsibilities, she sees patients with a broad array of rehabilitation and neurological needs. She treats patients with cancer, spinal cord injuries and neurological conditions. Margaret is always looking for ways to advise others to minimize the results of their injury or disease. She asks: What does the medical condition mean with regard to life participation? What are the goals of the individual, their options? How can medicine and rehabilitation interventions best be applied to help them maximize their potential? By empowering them, through work and therapy, they can go on. Her medical responsibilities include consultations for patients with a variety of disabling conditions. Patients she sees range from those who have just received organ transplantation through those who suffer devastating injuries. Consultations include safety issues such as advising when it is safe for patients to get out of bed, increase activities, and begin the rehabilitation process, establishing optimal level of care post acute hospital discharge, helping people discover the life goals that are most important to them and thinking of ways to achieve them. Additional areas of consultation include recommending changes in medications or other therapies that will reduce the disabling manifestations of illness, or advise on the optimal applications of assistive technologies. The bottom line is helping people understand the implications of their illnesses and disabilities so that they can live the most rich, meaningful and complete lives.
She is involved in research projects 80% to 90% of her time. Her involvements range from brainstorming the ideas and conceiving the project to writing the grants. Margaret will put a team together, pilot the idea and then collaborate with others from all over the world. She has worked at the World Health Organization on ways to evaluate community based rehabilitation worldwide, asking how best to measure interventions in countries with few resources.
Usually working on a number of grants simultaneously, Margaret works with large databases. She funds project staff and a wide variety of clinician scientists through these grants, to work as collaborators, and biostatisticians on the data analysis. Her philosophy is to use a team process composed of people with disabilities directing the team towards more meaningful research questions. Margaret always has people with disabilities provide input on grant ideas incorporating their values and input. Often their feedback includes accessibility and resource issues.
As Faculty, she is a teacher in a "Doctoring Program". Topics include a wheelchair exercise, developed by a second faculty member with disabilities, where medical students are required to spend time using a wheelchair assisted by a classmate. They then talk about their experiences and implications with regard to providing care. Initially, the medical students do not want to use the wheelchairs but after the class, they begin to understand the real life side of the experience. That session also brings in people with disabilities who share their life experiences with a small group of students and focus on ways that doctors can be more sensitive to their needs.
Margaret was the course director for a session on exercise programs for people with disabilities sponsored by the National Institutes of Health/National Institute on Child Health and Human Development/National Center for Medical Rehabilitation Research during the Paralympic Meeting in Atlanta, Georgia, August 13, 1996. This meeting brought together speakers from all over the world on ergometric wheelchair design, cardiovascular fitness, overuse syndromes, etc. It focused on competitive and noncompetitive sports, and the challenge of developing fitness programs for people with significant musculoskeletal and neurological disabilities. The results led to a white paper on how the guidelines for fitness, developed by the Surgeon General for the general population, need to be modified for people with disabilities. Athletes with disabilities, researchers, and clinicians attended the session from all over the world. For the last several years, Margaret has involved in a wellness program for people with chronic disease that focuses on life enhancement through workshops on medical topics, environmental modifications and applications of the arts to enhance self awareness and healing. She is also a songwriter and artist.
Margaret's most recent research involves the development of quality of life measures. These measures produce "value rulers" that display how people would recover functional abilities if they could control the direction of their own recoveries. Value rulers are intended to guide clinicians in identifying those rehabilitation goals that are most important to patients. She also writes about the relationship between disability advocacy and the medical profession in efforts to enhance clinician empathy and understanding of the challenges their patients face. She is also editing a book for physicians' practices on accessibility and compliance with the Americans with Disability Act. She has directed and consulted widely on a variety of projects involving program evaluations for rehabilitation, quality improvement, clinical trials of exercise interventions, case-mix adjustment, and the development of technology to assist people with disability.
Education: As a child, she was placed in remedial classes for reading. At times she was placed in class sections with students who had behavioral difficulties or learning problems. Many of the well-meaning remedial reading programs, recommended to assist Margaret, really did not help. They attempted to use many devices such as a screen with a ruler that moved down the text on a written page to increase her reading speed. Margaret is honest about those early accommodations, "The things that helped occurred later in my life. The first was the acceptance that my reading by sight would always be somewhat slow and labored because of my muscular paralysis. The second was the use of taped materials to supplement my reading by sight. The third was a surgical procedure on my right eye at age 21 (the eye with the best acuity) that made sight in that eye much more functional."
With a Bachelor's degree in Fine Arts, Margaret began her career with painting and sculpting. Later, she studied Chemical Engineering and Biology and this lead her to medical school. She obtained her BS in Biology from Drexel University and her MD from Hahnemann University. She developed her skills as an artist, because she felt her ability to learn was limited. This was before she learned adaptive techniques.
Margaret won numerous prizes for her paintings and sculpting. As an art student, she learned how the brain processes images. She took that knowledge and redesigned the way people see with their eyes as well as their nervous systems. This lead to an entire series of paintings where she reconstructed "reality" based imagining changes in the visual system and in the way the brain processes images. Her success as an artist greatly contributed to her sense of worth as a human being.
Through that success, she realized she must be intelligent, so she began tackling academics differently, taking a calculus class. She also began to study engineering. Her early studies in Engineering were a back up choice because she feared she "couldn't" get into medical school and would not be able to tolerate long hours of studying. She could never sit for long periods of time because of her scoliosis and other skeletal abnormalities, so she actually tied herself into chairs using pillows and cushions. This allowed her to sit and therefore study for longer periods. With the help of a physicist friend, she learned basic math as well as trigonometry. She got straight A's in science classes and this led her to medical school. Her studies in Engineering and Math continue to help her today in her research projects, which are highly mathematical and quantitative.
Early in her college career she failed a biology essay exam but got a perfect grade on a multiple-choice test. Confused by this extreme pattern, her instructor told her, "You have no sense of language structure." Because there was no remedial English at that university, he sent her to a class on English for the foreign born where she learned sentence structure and punctuation. Before she developed a wide variety of adaptive strategies her level of reading was low. Once she discovered adaptive approaches to studying her motivation increased and she relearned things she was not able to learn well as a child. Because she understood her visual disability, Margaret could adjust her environment and now is more effective at providing her own accommodations. Scholarships: Because her father worked for Drexel University, she had very low tuition costs. In addition she took out loans and worked. Most of her financial support came from her mother who worked to support her.
Medical School: Not about to be defeated, Margaret applied to thirteen medical schools and was wait listed for three schools, which meant she was accepted but could only get in if someone who was also accepted, declined their admission. She was accepted at Hahnemann before completing her bachelor of science degree. She would have been happy at any of the schools.
Introduction: Margaret fell in love with medicine early on in medical school. While she realized that doctors couldn't cure long-term medical conditions, they can provide rehabilitation to assist people in gaining independence. This was the impetus that helped her decide to become a rehabilitative physician.
If she had to describe a single experience that allowed her to go from a person who was headed for living on disability income to one who would have a profession and be successful, it would be the assistance she received from the Office of Vocational Rehabilitation (VR). It came at a time when she was really struggling. She had completed art school and the psychiatrist that VR referred her to, gave her an intelligence test. He stopped halfway through and said, "You can do anything you want. You can name your career." Earlier, her intelligence had apparently been unrecognized but now she was encouraged to be anything she really wanted. It was the first time she was told she did not have to apologize and fit a mold about how people learn. The psychiatrist encouraged her to learn using whatever conventional or unconventional ways worked best for her.
Professional Accomplishments: During her rehabilitation residency, financial incentives for early patient discharges from the hospital became common because of changes in the ways that hospitals are paid. The belief that these premature discharges could significantly affect patients positive outcomes prompted Margaret to design a more equitable clinical payment system for rehabilitation. The medical community began by grouping similar patient diagnoses into various categories called Diagnosis Related Groups (DRGs). The DRGs determine how hospitals are paid to provide services and thus indirectly determine how much the types of services doctors can provide to patients.
Concerned that financial decisions would be effecting clinical decisions in a way that would have a deleterious effect on the quality of services provided to patients, Margaret made the decision to try build a fairer payment system for rehabilitation medicine. The payment system design took nine years. It is called FIM-Function Related Groups (FIM-FRGs). In August of 2001, the government implemented a modified version of the system. The FIM-FRG system, she and her colleagues designed, is extremely important because it allows more clinical resources for the care of people with more severe disabilities. Her research further acknowledges the need to recognize quality of care indicators and patient outcomes, measured over time, simultaneously with determination of the payment. This was a major accomplishment for Margaret and she acknowledges the many diverse abilities of everyone who contributed to the body of research.
In addition, Margaret and her group have published a number of approaches to quality of care monitoring in the IRF (Inpatient Rehabilitation Facilities) setting that have been applied in the private sector (through national data systems and accreditation agencies) and in the Veterans Affairs Medical Centers (through their Functional Status Outcomes Database).
She earned a number of awards based on her research. She serves on numerous national clinician and research task forces and boards, and is a frequent invited speaker at national societies.
Disability: Margaret's visual disability affected her reading abilities so she had to develop new techniques for reading. Because she learns by listening she was not encouraged to read aloud and did not receive any accommodationsor equipment which assisted her to read in her early years. Margaret decided, after receiving her art degree, that she must relearn to read. As an adult, she better understood that she did not see symmetrically due to missing eye muscles. She began to understand the way her eyes worked by studying the nervous system. Her early drawings were always distorted which made her realize that she did not scan the environment normally. She viewed reality differently. Although she painted with tremendous detail, the structure was always distorted because she has no sense of space or structure. Later in her life she learned to compensate for her visual distortions by using measurements, templates and mirrors that reversed the image and allowed her to analyze and correct the distortions.
Margaret feels she is healthier today than earlier in her life because she has learned that with the proper environment designs, her coping capacity greatly improves. Through practicing time management, using proper adaptive equipment and making modifications to her environment, she accomplishes more today than in the past. Margaret believes that health care providers and physicians should only practice in those areas where they excel. Its important to Margaret that her disability doesn't affect her practice, so she has designed an environment using technology and accommodations like a wheelchair that easily folds for travel and a good cushion for seating. She doesn't anticipate any changes in her practice as she ages with a disability. This is because her medical condition is stable and because she consciously chose a type of practice and career that would capitalize on using her abilities and intellect rather than on physical capacities required in performing certain procedures.
Margaret's many peers value her expertise and help contribute to her success just as she contributes to theirs. She doesn't drive due to her visual disability. She must rely on many colleagues as she travels, including the Department Chair who provides transportation for early morning meetings. Spending time with Margaret allows her colleagues to understand her disability and hopefully, gives them greater insight into other people with disabilities just as her patient's situations allow Margaret to better understand them.
She shares with medical students personal stories about her life. She knows it sends a powerful message. Margaret understands that as a person with a disability, being visible in the world demonstrates diversity, sensitivity and understanding. She feels there has been progress in how others view her, for instance, initially as a child she felt ignored or unimportant. As a professional she believes that students and staff truly value her and are gracious when their assistance is needed. If she wasn't a wheelchair user, she feels she would not be as creditable when attempting to teach students about caring for patients with disabilities. It is a visible reminder that demonstrates, if I can do it, you can also do it (as an individual without a disability).
For Margaret, disability is a tapestry, part of the bigger picture that links everyone's various abilities together as a whole. Her life experiences have helped her understand others. One cannot truly know another's disability but Margaret feels we can understand the process. Her particular way of seeing and listening has provided an opportunity for her to influence her colleagues and her students by modeling and teaching them that a person with a disability is able to work and be successful professionally as well as personally.
Mentors/Role Models: A family friend who was missing an arm was Margaret's role model while growing up. Margaret hoped to be just like everyone else. Her success and experiences as an artist, her creativity and her ability to invent things, made her realize she could make it in her chosen profession.
David Hartman, Tom Strax and Julie Madorsky, personal physician friends with disabilities, are important mentors to Margaret. She knows them through professional organizations and David was the only physician with a disability that she knew before entering the profession.
Margaret has influenced many students with disabilities in the University where she is a Faculty member. She has participated on academic standards committees in order to make them more user friendly for people with disabilities. Because she felt she had to keep her disability to herself in the beginning of her own education, she has worked hard to encourage the fair distribution of scholarship money to open doors for students with disabilities to attend college and medical school.
Accommodations: Margaret's needs and use of equipment and accommodations are constantly evolving. As a child, many barriers prevented her from reading well. As the print got smaller, she found she couldn't read. It was also difficult for her to follow words across the page. She wasn't motivated then because she could get through elementary and even high school without reading well. Her lesson: "Abilities can be hidden by other things." Since she had not learned certain things well, she had to relearn them as an adult. Now she is an accomplished author, having received awards for her writing and editorial positions as a guest editor and reviewer for numerous journals, research publications and abstracts.
Early during medical school, she learned that a high speed tape player with a lowered frequency (so the voice could be understood) would assist her in covering a lot of reading material in a shorter time. It was designed and made by a friend. She then highlighted important text portions while listening to the text read at a rapid speed. She learned to compensate by using her ears along with her vision. Previously, she had worked with psychologists and teachers who instructed her to never read aloud but since she takes things in verbally, she needed an alternative. As with most of her adaptations, she designed and paid for what she has needed herself. Fortunately, Margaret figured out what accommodations she needed, successfully demonstrating her ingenuity and allowing her to complete medical school.
During her residency, she had volunteers working with her to retrieve medical records so she would not have to reach them off high shelves. Due to shoulder deformities, Margaret cannot reach high places.
The first month of medical school, after she failed her first examination, the Assistant-Dean called her in and openly discussed her disability. He started by saying, "You don't look quite normal to me. I think you have a disability." He had recently seen a show about an individual with cerebral palsy and asked about accommodations she needed. Margaret, who had not openly discussed her disability, decided instead to quit medical school altogether. He quizzed her and finally asked pointedly, "Do you really want to quit?" and her honest response was "No." He encouraged her to take time extensions for exams, which she refused. He also encouraged her to do it her own way. It was then, she began using tape-recorded readings of the medical textbooks along with her own scanning of the material. Once she developed a personal study method she never failed an examination again. She began to receive honors.
From 1979-1983, Margaret received support from Vocational Rehabilitation to pay for readers though most of them had difficulty reading medical terminology. It was somewhat easier for her mother who was her main reader through medical school. Since Margaret combines reading with listening, she follows the speeded up tape recording while reading along in the text. Combining reading while also using her ears to hear simultaneously enhances her learning and retention. Margaret acknowledges that if she had been forced to use traditional reading methods, she would have flunked out. After reading 15-17 hours a day, she still failed an exam because she could not read fast enough to complete enough of the questions within the allotted time. Due to scoliosis when studying long hours, she had to physically tie herself in a chair to sit upright long enough. She wrapped pillows and cushions around her torso so she can sit comfortably for long periods of time. She also took verbal notes during medical school, whispering into a tape recorder while simultaneously listening to lectures. Because of difficulty with her arms she was unable to write long notes.
Margaret did not want to take unfair advantage, so she never requested time extensions on examinations. Only once, when extremely ill at the end of her medical internship, did she accept a time extension. This was on the final medical Board exam which is normally a day long test. She did accept more frequent breaks on long board examinations and took the National Boards in the Dean's office to avoid disturbing other students.
She used no mobility aids until her medical internship. If she had used a wheelchair during medical school, she knows now that a lot of things would have been easier but also more troublesome. She readily acknowledges that she damaged some joints by not using a wheelchair sooner. Margaret knows it would have been difficult to have been accepted earlier if she had used mobility aids because in those days many things would have been impossible to do from a wheelchair. At that time, she also feared it was wrong to use a wheelchair if she technically could walk. Now, she knows wheelchair use is a tool like using a car.
She now understands using a wheelchair would have made her even more functional. She would often fall during school just from fatigue and using a wheelchair would have given her greater mobility, greater energy, and less pain, as well as reduced the psychological stress of worrying about falling. By the end of medical school, she was in such poor physical shape from the physical stress and numerous pulmonary infections that the Dean put a sofa in a room off his office where Margaret could rest. It enabled her to get through that difficult period of time. The faculty discouraged her from going on to internship, fearing that she would not survive it. She believes that the use of a motorized scooter during that period may have saved her life.
During internship she had a shelf built on the basket of her motorized scooter so she could read patient charts and write notes. When it became physically difficult to write, she programmed a portable computer to help record patient histories, physical examinations and medication orders. This was a forerunner to the computerized charts of today. Again, Margaret was ahead of her time. She was fondly called the "rolling library" since she also had a Physician Desk Reference (PDR) and several medical text books onboard her Amigo scooter. Her first seating system, which she designed over the handlebars and seat of her scooter, had rear view mirrors since she couldn't turn her head or eyes and look while backing up. Her seat adjustment also allowed her to turn her entire body, not just her head.
Most of the accommodations she really wished she'd had earlier were not available yet. Currently, she has several different wheelchairs to fit her environment, be it the campus, the streets of Philadelphia or airline travel. Her latest travel chair is lightweight and has motors in the wheels so it comes apart easily and can fold for airplane or taxi-cab travel. It's her favorite technology besides books on tape. The first time she listened to a talking book, she exclaimed, "Oh, My God!" because prior to then she had never read for pleasure. Margaret realizes how privileged she is to be living today when so many more accommodations are available.
Margaret has also built many braces and pieces of adaptive equipment over the years. Some did not work while others worked beautifully. She created a Plaster of Paris mold of her entire body for the design of a seating mechanism. This was used to create a plastic vacuum mold form of her body. It was not useful. Today, she cannot live without a light weight seat consisting of molded shaped foam that she takes with her on her wheelchair She greatly appreciates and recommends befriending technical staff as they often help design and build equipment for her. She feels that it is essential that people with disabilities have a major say in the design and selection of the adaptive technologies they use.
Who has paid for all this? Margaret did, except for the help of Vocational Rehabilitation who funded readers during medical school. One regret is that as a child, she never knew to request taking exams at tables rather than the traditional desk with arms. She could not see the Board and was uncomfortable sitting at those desks. Her key learning points were to make minimal demands on the system, but never be afraid to come up with innovative ways to enhance your function. She never takes on the responsibility for doing things she is unable to do, or might not be able to do as well as someone else. This is a particularly important point for any physician. Whether you have disabilities or not, it is essential to limit your practice to cover only those areas where you can provide absolutely outstanding care.
Her Advice: Be honest and be creative. Honesty is Margaret's most important value. Solve your own problems if you can, it serves as a great example to others. Mentor and work with all people, including those without disabilities, because they can also be good spokespeople for disability issues. "We don't always have to fight and be adversarial. We can increase our power and decrease barriers even more if, in addition to advocating for ourselves, others without disabilities also advocate on our behalf. First we need to demonstrate to people without disabilities that we can contribute to society. As they watch us function they will see the profound barriers we face, and help stimulate change."
Attitudes/Discrimination: Margaret has encountered many mixed attitudes, most of which are positive. She still experiences some nervousness when a patient assumes she is another patient. She realizes that she can give to others who are experiencing challenges because she has had challenges as well. The dichotomy for Margaret often occurs when she is traveling because even though she is a professional, she's treated differently because of her disability. She uses humor and the opportunity to teach others in a positive way, something she calls "showing them up."
Once, while trying to board a bus to attend a conference, her electric scooter had to go in the luggage compartment. The driver, who was less than generous, started by saying, "This ain't no Handi-van, ma'am." She knew she had the right to be on that bus and that he could physically assist her so Margaret showed him how to take the electric scooter apart and put it in the compartment. After refusing again, clearly stating, "I won't do it," she boarded the bus in spite of his objections. After swearing at her, he did load her scooter into the underbelly of the bus. At the end of her trip, she thanked him and handed him a $50 tip, smiling sweetly while saying, "Thank you for your help." This prompted him to apologize, put her scooter back together, refusing the $50.
Humor helps her a lot especially while traveling alone, which she does 90% of the time. Once, while waiting in line at an airline counter, the staff actually addressed the woman in back of Margaret, a total stranger, asking her, "Does she speak?" The woman's reply, "I don't know, why don't you ask her?" Margaret, at that point, decided not to speak but later did address her. Then, as they tagged her wheelchair, she was further humiliated by being forced to wear a "Special Assistance" badge around her neck. She saw the pilot waiting and started a conversation, asking him several scientific and highly technical questions about the physics of air flight. He finally asked, "Who are you? What do you do? Are you some sort of scientist?" She answered by pointing to the special assistance badge around her neck.
Professional Organizations: Currently, Margaret is active in the American Academy of Physical Medicine and Rehabilitation. She is also active as a board member in the American Congress of Rehabilitation Medicine. She is or has been involved with ten other national organizations and seven local ones such as the College of Physicians of Philadelphia. Additionally, Margaret has been active on or spoken at numerous national Scientific Committees with the National Institutes of Health, the National Institute on Disability and Rehabilitation Research and the American Physical Therapy Association.
She is currently a Medical Advisor for the Charlotte W. Newcombe Foundation that provides financial support to students with disabilities studying at the University, a member of the Teaching Evaluation Committee in the School of Medicine and a member of the Graduate Group in Epidemiology and Biostatistics. She has given numerous invitational lectures and written or co-written forty-nine peer reviewed research publications.
Awards:
- Carolyn L. Braddom, Ed.D. Research Award
- Elizabeth and Sidney Licht Award for Excellence in Scientific Writing from the American Congress of Rehabilitation Medicine
- Second Award Elizabeth and Sidney Licht Award
Contact: Margaret is willing to be a resource to others with disabilities who are thinking of entering the medical profession. Contact her associate by calling: 215-898-6702.
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