Part One of a Two-Part Series;
Next Month: Nurses who use Wheelchairs
In This Article:
It’s 1992 and the Americans with Disabilities Act is the new kid on the block. Jim Post, a 23-year-old C4-5 quad who recently graduated summa cum laude from King’s College in Wilkes Barre, Pennsylvania, is on NBC’s The Faith Daniels Show. He sits straight in his power wheelchair, well-groomed, handsome and composed, as the live TV audience listens to Daniels describe his dilemma. “He graduated top of his class and is the only one of his class kept out of medical school,” she says. Post has been rejected by all seven med schools in Pennsylvania. “Jim, did you ever think this would happen?”
“No, I never thought all of them would reject me,” he says. The audience feels for him, but they can see why his application would be denied — his fingers are permanently curled. Wouldn’t that in itself keep him from being a doctor?
What they don’t see is the larger institutional problem — the prevailing assumption among most medical schools that a quadriplegic candidate will not be able to satisfy certain “technical standards” — non-academic tasks or protocols that all med students must meet to become doctors regardless of their chosen specialty.
Daniels asks a member of the audience, Dr. Stanley Wineapple, a doctor with a visual impairment, why he thinks Post was rejected. He says that technical standards [below] don’t account for all the options that may allow people with disabilities to function. “What is not being considered are advances in technology and the use of personal assistants. … If microsurgeons were not allowed to use their telescopes and their special lenses, they wouldn’t be able to do microsurgery, and additionally, physician assistants are ideal to help a person with a disability meet the technical standards.”
Daniels then turns to another guest in the front row, Dr. Herbert Schaumburg, professor and chair of neurology at Albert Einstein College of Medicine in New York. He says a paraplegic female just graduated from AECM, and another student, a male, became quadriplegic after he enrolled. “The big thing that they have to do is they have to provide some help for themselves, in physician assistants. … He [Post] wants to be a radiologist, it is well within his grasp.”
Daniels then throws out the challenge: “Can Jim come to Albert Einstein?” Schaumberg, surprised, stumbles at first: “It’s, it’s … well, he has to apply first.” The audience cheers and applauds, and Daniels abruptly wraps up the show — right on time for the commercial break.
The Pervasive Underlying Bias
Of course, the problems of the everyday world are rarely resolved in neat TV show increments. Case in point: compliance with the 1990 Americans with Disabilities Act.
The medical establishment in particular has been slow to comply with the ADA. Dr. Lisa Iezzoni knows why. Not only has she researched the topic, she has lived it. At the end of her first semester in medical school in 1980, she was diagnosed with multiple sclerosis, which complicated her future — but not nearly as much as the prejudicial attitudes that had already shaped the profession she hoped to enter. In short, she successfully completed her studies and graduated from Harvard Medical School but was prevented from applying for an internship or residency by HMS higher-ups, whose biased, uninformed views on her disability led them to withhold support for credentialing.
Since then, Iezzoni, now a professor of medicine at Harvard Medical School, has distinguished herself as an expert in healthcare inequities, especially for the disabled community. In a 2016 American Medical Association Journal of Ethics article, she writes that physicians “have little understanding about living with disability or the consequences for daily life or health-related behaviors.” She cites a seminal study of the attitudes of 233 doctors, nurses and emergency medical technicians toward treating persons with spinal cord injury. She then compares their responses to people who actually live with SCI. One statistic stands out starkly: Only 18 percent of the medical personnel said they could imagine being glad to be alive following SCI, compared to 92 percent of those living with SCI.
Iezzoni attributes the negative view that healthcare professionals have of SCI survivors to their limited interactions with them in mostly clinical settings. Doctors have little or no direct contact with patients in their everyday settings, so they remain ignorant of the adaptations and accommodations that disabled people routinely rely on to live independent, productive lives. Along with other factors, this lack of knowledge explains why people with disabilities who want to enter the medical profession often face attitudinal barriers that limit or deny their choices. As a result, the disability population is disproportionately underrepresented in the medical profession. A 2016 study found that a mere 2.5 percent of medical students have mobility impairments. Prior to 1992, becoming a doctor as a wheelchair user was almost unheard of — only .19 percent of medical students with physical disabilities (a much broader category than wheelchair users) graduated.
Iezzoni hypothesizes that “increasing the number of physicians who actively identify as having a disability and who require accommodations to practice their profession could improve health care experiences and outcomes for patients with a disability” [emphasis added].
When Docs ‘Get” Disability
Brad Frazee, 42, an ER doc for 18 years, has a unique front row seat from which to test Iezzoni’s hypothesis. In 2006, he was struck and run over by a Range Rover while riding on a bike trail near his home in Mill Valley, California. When he regained consciousness three weeks later, he was a patient with a T10 spinal cord injury and a badly damaged shoulder.
He was transferred to the University of California, San Francisco, where he had graduated from med school. From there he hoped to go to rehab at Santa Clara Valley Med Center, a Model Systems SCI Center, but as a patient no longer calling the shots, he was told he wasn’t ready. “They sent me instead to Kentfield, mostly old folks,” he says. “I got despondent, thinking I probably couldn’t return to my work. So I lifted weights like crazy to get out of there. By the time I got out and went to Santa Clara on my own, they wouldn’t take me because they said I was too far advanced!”
Eight months later, he showed up at Highland Hospital in Oakland in his wheelchair, ready to resume his job. Whenever a person with a new spinal cord injury came in for emergency treatment, the encounter was strange. “There’s usually no real opportunity to make a direct connection then,” says Frazee. “The person may be in shock. It’s unclear how permanent it is. It’s actually a bit PTSD-generating. Everyone in the room looks at me like they are thinking about me, not knowing what to say. It is so awkward.”
Later, when the patient is stable, Frazee visits. “They are in a whole different section of the hospital, and I can make a connection when I go see them,” he says. “I give them the kind of info no one else knows, encourage them, tell them they are going to be OK.”
His experience has given him a new point of view about not only spinal cord injuries, but life-altering medical events in general. “In the hospital you’re at the mercy of all these people who don’t know you. There is a profound sense of powerlessness, a lack of control, and being a patient in this situation is what most doctors do not appreciate.” But with patients, when he rolls in, “they instantly know I have been through what they are going through. It could be any of a host of things with life-changing consequences, cancer, trauma. I know they are in for hell, and I tell them ‘listen, you need to kick back and let the docs work — it will be tough … but you will get through it.’”
Frazee can say this with confidence. More than 12 years post-injury, he is an avid handcycler, in good health, comfortable working eight-to-10-hour shifts, splitting his time between overseeing ER cases, teaching and doing research. Since his injury, he has published 24 original research papers. He is board certified in internal medicine as well as emergency medicine and has a passion for researching infectious diseases.
Daniel Grossman is another ER doc who confronted getting back to work after being paralyzed. Injured in a mountain biking accident in Minnesota in 2017, he woke up in a hospital as a T7-8 para. Just five months later, he was back at his part-time job at Mayo Clinic’s Rochester ER department. He credits his quick turnaround to the quality of care he received, his own aggressive attitude and a mentoring relationship he had with Dr. Robert Brown, a Mayo neurologist and wheelchair user of more than 40 years.
Grossman immediately decided to get back to work. “I didn’t consider any other set of options. My mind was fixed on returning to work.” At the time of his accident, besides working part-time as an ER doc, he had a successful career in business and was in discussions to join Bright Health, an early-stage health insurance company in Minnesota. Now he goes to his office there regularly and drives to Mayo in Rochester once a month to work four nine-hour ER shifts over a four-day period.
Like Frazee, Grossman’s personal experience with SCI has changed his outlook as a doctor. “I’m more compassionate now,” he says. “Being in a hospital is an incredibly scary experience. How someone speaks to you can invoke fear or calm — the way they do it can create either response. The more you can place yourself in the viewpoint of a patient, the more you can empathize and create a helpful way of communicating. So having been a patient, I’m better now as a doctor, knowing how I would want someone to explain something to me. Real experience is more thorough than textbook learning.”
As paras, Frazee and Grossman encountered relatively little resistance when they returned to work in wheelchairs. But when Sam Simms became an incomplete C6-7 quad in 2003 and wanted to return to his ER position at St. Mary’s Hospital in Jefferson City, Missouri, he was told that limited hand movement and dexterity would prevent him from sewing and doing other hands-on tasks, which meant he could no longer be credentialed as an ER physician. He pushed the boundaries and convinced his superiors that a helicopter flight nurse, skilled in emergency protocol, could do the sewing and other tasks, and he would supervise and employ the nurse. They balked, citing liability concerns, but Simms convinced them that they could be credentialed as a team. They finally gave in and Simms has remained on the job to this day, 18 years as a quad doctor, without a single lawsuit.
“More importantly,” Simms says, “having a personal nurse has freed me up to spend more time with each patient, which is a luxury to doctors these days. I would never go back to the way it used to be. This is a better model, and I can afford to pay for a nurse.” Simms makes $260-$300/hour and the nurse charges $35/hour. Considering that the average on-the-job “lifespan” for ER docs is around 10 years and Simms is approaching the 30-year mark, it’s hard to argue with his claim.
Simms, Frazee, and Grossman are among an unknown number of physicians in the United States who practice from wheelchairs — most of whom acquired their disabilities while they were doctors. In preparation for writing this article, I assumed that I might find only five or six wheelchair-using docs, but after two months of researching and interviewing, I had compiled a list of more than 25. Who knows how many more are currently practicing or in the med school pipeline?
Finding the Right Med School
Even though the Rehabilitation Act of 1973 and the ADA provide for reasonable accommodations in education, finding a medical school that complies with the spirit of these laws has always been difficult. Jim Post was fortunate to find Schaumberg as his mentor at AECM in 1992.
Chris McCulloh was also fortunate to find his mentor. He was 28 when he became paralyzed in 2008 from a fall and sustained a C6-7 incomplete injury. At the time he had applied to med schools, but his future was now in doubt. Then fortune, so recently his nemesis, smiled on him. Within weeks he started regaining sensory and motor function. A year and a half later, now functioning more like a T8 para, McCulloh resumed his career path.
He had heard the stories of prospective med students in wheelchairs being screened out due to enforcement of outdated technical standards but had a good feeling about Case Western Reserve School of Medicine in Cleveland. “Most important is finding a place that wants to work with you,” he says. “I had doubts about several places where I interviewed. Some I knew pretty soon were not a good fit — they were not asking the right questions. They have to take an interest in your disability and how they can help.”
At Case Western he discovered his passion — pediatrics. Dr. Edward Barksdale, head of pediatric surgery at Case Western, became his mentor and McCulloh followed him through different rotations for a month. “I loved the school. They were incredibly willing and helpful. I realized in an instant that’s what I wanted, and the kids drew me in.”
Prior to entering Case Western, McCulloh had found a doctor in Hawaii, Dr. Peter Galpin, who would do for him what a team of engineers at Mayo had done for Brown 30 years earlier [see sidebar, next page]. “I shot an email to Dr. Galpin, and he told me all about standing wheelchairs, where to get one, funding and everything.”
Now, more than 10 years post-injury, McCulloh uses a LEVO C3 standing wheelchair in his fourth year of general surgery residency at Morristown Medical Center in New Jersey. He has applied for a fellowship in pediatrics. “My focus will be all things pediatric, except for the brain. Pediatrics is the one true surgical field where everything goes — all kinds of surgery are possible.”
The New Paradigm
Technical standards that discriminate against people with disabilities, especially those with sensory or mobility impairments, are still in need of upgrading, but antiquated paternalistic attitudes that devalue the lives of people with disabilities are gradually beginning to fade away. One med school in particular, the University of Michigan, is leading the way. Dr. Oluwaferanmi O. Okanlami, director of the University of Michigan’s Medical Student Programs, is at the forefront of the new paradigm that may one day replace the outdated medical model.
“Dr. O” is another incomplete quad-turned-para who experienced remarkable motor and sensory return. He graduated from Stanford Medical School before coming to the University of Michigan. In addition to his involvement with medical students, he is clinical assistant professor, department of family medicine, department of physical medicine and rehabilitation; and director of adaptive sports. Okanlami states unequivocally that physical disability should not be seen as a legitimate reason in and of itself for screening out med students. This view is supported by the Association of American Medical Colleges, but only a small percentage of med schools have instituted guidelines, programs and protocols that make it a reality.
“Universal design is what it is all about,” says Okanlami. “I believe that technology will allow a quad to be a surgeon. Robotic surgery is like playing a computer game, sitting behind a screen and looking at a video game. Tech is increasing so rapidly that there will be other ways for a quad to do this kind of work. The field is evolving. I am not willing to put up barriers.’
No doubt Dr. Karen Muraszko, 62, had something to do with Okanlami’s progressive mindset. Born with spina bifida, Muraszko did not begin using a wheelchair until after she had graduated from medical school, practiced pediatric neurosurgery at the University of Michigan, and was named chair of the university’s neurosurgery department in 2005 — the first woman to hold such a position in the United States. She still teaches and performs operations from her power chair, proving that a wheelchair is not an obstacle to practicing even the most demanding of medical procedures — brain surgery.
“Disability or not,” says Okanlami, “in a life or death situation, you need the knowledge and organizational skills above all else, so disability should not exclude someone from the profession because of others’ limited perceptions. We currently have two quads enrolled in University of Michigan’s Medical School — Chris Connolly, a C6-7 incomplete quad in his second year, and Maureen Fausone, a C5-6 incomplete quad, who has one year to go to graduate.”
Dr. Cheri Blauwet is also outspoken about the importance of inclusion. She is an attending physiatrist at Brigham and Women’s Hospital and Spaulding Rehabilitation Hospital in Boston, where she is director of disability access and awareness, a position that gives her standing to advocate for the same kind of healthcare changes that Iezzoni, an important mentor of hers, has prioritized.
In a recent New York Times opinion piece, Blauwet writes: “People with disabilities often express fear or dissatisfaction with our health care system because they face poor access and discriminatory attitudes. This must change. Perhaps having more doctors with disabilities is one solution. As with any underrepresented group in medicine, professional diversity should reflect our population’s diversity. That simple change can bring awareness, empathy and a shared experience that ultimately makes all of us better.”
Blauwet is well-known for her Paralympics career in wheelchair racing. She started using a wheelchair at the age of 4 after sustaining a T10 SCI in a farm accident two years earlier. Her mother, besides being a farm wife, was also an RN who got involved in healthcare leadership. “I was exposed to that a lot,” says Blauwet. “I also had major surgeries and medical treatment more than others, so I was interested in these kinds of things. As a high school and college student and part of the ADA generation, it never crossed my mind that I couldn’t become a doctor.”
Blauwet attended the University of Arizona in Tucson and graduated with a bachelor’s in molecular and cellular biology. She graduated from Stanford Medical School in 2009 and went on to complete her residency training in physical medicine and rehabilitation at Spaulding Rehabilitation Hospital/Harvard Medical School, where she served as chief resident. She followed that with a sports medicine fellowship at the Rehabilitation Institute of Chicago.
Blauwet married in 2013 and is now a mother to Stella, who is about the same age as she was when she became a para. No doubt she wants her daughter to live in a world that values her and affords her every opportunity to succeed, where gender and other determinants of diversity — disability included — are treated with respect. “I always assumed my disability would not be a problem,” says Blauwet, “and that we should be able to determine our own future. Fortunately, I’ve been able to do that.”
Jim Post: The Rest of the Story
And what about Jim Post, the C4-5 quad? Did The Faith Daniels Show help him make the all-important connection with Dr. Schaumberg and the Albert Einstein College of Medicine?
It turns out that Daniels had asked Post if he would like to invite someone to be on the show. Post had heard of Schaumberg but they never met until the day of the show. Post applied to AECM and successfully earned his medical degree. His wife attended classes with him and acted as his assistant in gross anatomy lab and did other tasks as well.
Schaumberg and Post became good friends and helped others with disabilities get started in their medical careers. “He had experienced the same thing with his polio,” says Post. “He was such a great help. He gave it his all. He just retired this last Christmas after 58 years in medicine at Einstein.”
Post did not become a radiologist. “I considered physiatry, radiology, psychiatry, whatever I thought would not involve my hands, but what I really wanted to be in was internal medicine, a tough road for people with disabilities,” he says. “Other doctors told me I should stick with what I love, and I love internal medicine, so I went for it.”
After graduating from AECM, Post did his residency at Lennox Hill Hospital in New York. “They had a physician’s assistant program, so I knew I would have a pool of potential assistants I could rely on at any time. Now I’m board certified in internal medicine and nephrology.” He was hired to work in the nephrology department at the James J. Peters VA Medical Center in the Bronx in December 2003, distinguished himself in the hemodialysis unit and in 2015 was promoted to chief of internal medicine.
“When I first started out, back when I was on The Faith Daniels Show I never ever thought I would become this. I remember when I was interviewed at a different hospital, one doctor told me, ‘If you can’t palpate my liver, I would never come to you.’” During another interview a different doctor offered Post this analogy for why he was not admitted to his medical school: “Go downtown to the performing arts school and apply to be admitted to the piano program.”
“What a shot that was!” says Post. “But instead of discouraging me, it motivated me all the more.”
Double-Edged Sword: Technical Standards in Medical Schools
Within the context of educational admissions, the term “technical standards” was first articulated in Section 504 of the 1973 Rehabilitation Act, but guidelines for medical schools were not issued until 1979 by the Association of American Medical Colleges. Those outdated technical standards guidelines remain the primary reference to this day, despite subsequent attempts at clarification.
A November 2018 publication in the AAMC’s journal, Academic Medicine, entitled “Leading Practices and Future Directions for Technical Standards in Medical Education,” states: “Many TS may not be compliant with Americans with Disabilities Act standards as they are vaguely articulated, rely on outdated language and concepts, and/or are not clearly presented in the schools’ admissions materials or websites.”
Among other technical standards, students are required to perform a complete physical exam, draw blood, perform CPR and other physical tasks without assistance. “Reasonable accommodations” are often not being supported by current technical standards. The main problem is schools too often delineate how technical standards must be satisfied rather than what must be done. The authors of “Leading Practices and Future Directions …” [Laura B. Kezar, et al.] recommend that the principles of universal design be used to create a more inclusive approach.
They say that “functional” standards, which allow students to “provide or direct” care, are needed to comply with federal law as well as offer equal opportunity. “Organic” standards, on the other hand, are based on the candidate’s physical skills. Functional standards allow the use of technical innovations and intermediaries, or helpers — without which, most quads can be screened out of medical school.
The practice of medicine has changed substantially since 1979. Depending on the way they are defined and implemented, technical standards can either provide opportunities or serve as barriers. “We anticipate that the emerging focus on universal design and competency-based medical education will eventually render TS obsolete,” contend the authors. “In the meantime, the prevailing approach to technical standards must be revised.”
Pre-ADA Model for Accommodating Para-Docs
A more difficult path is taken by those who must gain entrance to medical school as wheelchair users, especially those who graduated from college prior to passage of the ADA. Dr. Robert Brown, injured in 1975 and a graduate of Mayo Medical School in 1987, is a notable exception.
“I chose neurology,” says Brown. “It’s a cognitive process I can do easily from a wheelchair. As a specialist in the field of stroke and other issues affecting the blood vessels in the brain, I often see people who have had strokes, aneurysms, and other vascular malformations, as well as Parkinson’s, Alzheimer’s, seizures, migraines and other neurological conditions. I freely interact with the person and their family members, learning all I can about their specific symptoms and past medical history rather than focusing narrowly on some technical procedure.”
Brown had sustained a T10 spinal stroke when he was 14. An excellent student, he flourished in college, applied to Mayo Medical School and was invited for an interview. “The reason I’m still here is because the day I came to interview, the dean and associate dean and other faculty visited with me during the interview, and they could not have been more welcoming. They were not worried about my disability and said, ‘absolutely, we can make it happen, let’s see if it is a good fit for you.’”
Later, he spent a day with the head of the gross anatomy lab and other basic science courses, and clinical directors, talking about the logistics of doing gross anatomy lab work and course work from a wheelchair. “After discussing how I might have access to all the lab activities, the head of the lab invited engineers over, and they got to work designing and building a one-off mobile power chair that raised up and down and allowed me to swivel, and I used it in anatomy lab and surgery. I kept it there, it was mine, designed just for that purpose.”
Brown’s pre-ADA med school experience was both exceptional and prophetic. Thirty years later, med school students have used commercially manufactured standing wheelchairs to level the playing field, even in the operating room.
Physiatry: A Welcome Path for Wheeler-Docs
A number of doctors who use wheelchairs have successfully specialized in physical medicine and rehabilitation. Of the more than 25 wheeler docs I have found, eight have become physiatrists, half of whom are women. In addition to Cheri Blauwet, Suzy Kim, Meghan Wilson and Allison Kessler are now practicing in the PM&R field. Wilson graduated from the University of Pittsburgh Medical School and now has her private practice in Youngstown, Ohio. Kim, well-known in the disability community through her affiliation with Rancho Los Amigos National Rehabilitation Center in Downey, California, also practices at St. Jude Medical Center in Brea, California. She received her medical degree from Keck School of Medicine (University of Southern California).
Kessler, in her first year as a physiatrist at Shirley Ryan Abilities Lab, a state-of-the-art facility in Chicago that combines research with ongoing rehab in an innovative teamwork setting, became a T12 para from a ski-jump accident at age 15. At the time she was an all-around athlete at a well-known private boarding school in Connecticut
“I went back to Choate because I valued the community, but reintegration was not easy. I mostly had to make all new friends.” Administrators offered to waive Choate’s athletics requirement for her, but she said no. A friend she respected told her she had the right qualities for the crew team. “She told me I should be a coxswain. She knew I was a leader, excelled in a team environment, and was very competitive.”
Kessler participated in crew through high school, during college at Harvard, and while getting her master’s from London School of Economics and Political Science, where she concentrated on public health and Sociology. “It was absolutely important to my identity after losing my friends following my accident.”
From London she moved to Chicago, where she got her medical degree at Northwestern’s Feinberg School of Medicine. “I used a standing chair to do my surgical rotation. Everything took planning and logistical foresight, and I learned it was OK to ask for help. I don’t need to walk to do what I do.” At Feinberg she also met her husband-to-be. During her fellowship at the SRA lab, she became pregnant. Her daughter, Brooke, will soon be 2 years old.
Working in a state-of-the-art rehab center is the perfect placement for Kessler. Like Blauwet, Kim and Wilson, her background in sports prepared her for the rehab environment, where hard work and commitment are critical to the recovery process. And SRA, with its emphasis on teamwork between doctors, patients and researchers, is not that different from crewing, where everyone works in sync to move the boat forward, one stroke at a time.