ARTICLE IN BRIEF
Neurologists and physicians who have neurologic disorders and disabilities discuss the challenges they have overcome to train and work with patients.
Dealing with severe bilateral sensorineural hearing loss is straightforward enough for Regina Troxell, MD, now in her fifth year as a child neurology fellow at Memorial Hermann in Houston: She relies on a hearing aid and lip reading to communicate. But, she said, dealing with some of her colleagues is sometimes somewhat more complicated.
“If an attending says something when we're rounding and I don't hear because there's background noise in the hallway, or they're not facing me, it can become an issue,” Dr. Troxell said. “A couple of times it has come up during evaluations, where they wrote, ‘I don't know if she didn't hear what I told her or just didn't do it.’ Maybe they're not comfortable asking me at the time of the event because it's a disability.”
Getting misunderstood or underestimated has been a near-universal experience, said neurologists and other physicians who happen to have disabilities in interviews with Neurology Today. The physicians and medical students — who discussed a wide range of disabilities, from hemiparesis, multiple sclerosis, and cerebral palsy to spinal injuries and hearing loss — said handling their disability is often easier than handling their fellow physicians' biases. But there are signs that progress has been made toward greater acceptance, they said.
DR. SONALI SEN: “You have to advocate for yourself if you have a chronic medical condition. If you don't, nobody's going to advocate for you.”
A TREND TO GREATER ACCEPTANCE
“Back when I applied to medical school, there were plenty of people who were doubtful that I could make it,” said Janice Brunstrom-Hernandez, MD, a neurologist with Gross Motor Function Classification System level 2 cerebral palsy. Dr. Brunstrom-Hernandez founded the pediatric neurology cerebral palsy center at St. Louis Children's Hospital in 1998 and now runs a freestanding cerebral palsy clinic in Plano, TX.
“Even when I was accepted to the Medical College of Virginia in Richmond, one of the professors there asked me, ‘What kind of physician do you want to be?’ I said I wanted to be a pediatrician and neonatologist. He asked me, ‘Are you willing to jeopardize the life of a child because you might drop the baby?’ He might have been trying to catch me off guard, just to see how I would react.”
Since arriving for her residency at Children's Hospital, which is affiliated with Washington University School of Medicine, Dr. Brunstrom-Hernandez said she felt “blessed” by her colleagues' understanding and acceptance.
“When I arrived, they had never before had anyone in the pediatric neurology program with a disability,” she said. “But no matter what people's beliefs or prejudices were before I got there, they were a pretty open-minded group of people. My colleagues were very open and supportive.”
DR. REGINA TROXELL, a child neurology fellow who has severe bilateral sensorineural hearing loss, relies on a hearing aid and lip reading to communicate. But, she said, dealing with some of her colleagues is sometimes somewhat more complicated.
TURNING TO THE COURTS
Sometimes students or physicians with disabilities must turn to the courts to protect their right to enter or remain in medical school.
Michael S. Argenyi, MD, MSW, was still legally deaf after receiving a bilateral cochlear implant before starting at Creighton University School of Medicine. Because the school would not provide an interpreter, he paid for one during the first two years of his training. Then the medical school insisted he could no longer have an interpreter, even if he paid for it, claiming it would interfere with the clinical practice of medicine. Dr. Argenyi sued and won the right to have an interpreter. The courts even ruled that Creighton had to pay for one.
Now a resident in family medicine at McGaw Medical Center at Northwestern University, Dr. Argenyi told Neurology Today that there are strengths and weaknesses in all physicians and medical students, whether or not they have a disability.
“One common misperception is that we should be equally capable and undifferentiated as medical students; this is simply untrue,” he stated in an email. “Students often enter and definitely leave medicine with specific interests and specific capacities. One student may have better empathy and find that her skills particularly mesh well in psychiatry, whereas another person may have poor hand-eye coordination and simply not pick up surgery as well despite all interest. For a student with a disability to be excluded is to blindly expect ‘abled’ students to perform well in all categories.”
WHAT THEY WANT
Maureen Fausone, who was one of the coauthors of a paper in AMA Journal of Ethics about the need to be inclusive in medicine, is now a third-year student at the University of Michigan Medical School. Paralyzed at the C 5-6 due to an accident when she was 15 years old, she has some use of her wrist and trunk, but no use of her fingers.
“A lot of the medical schools I applied to had not previously had a student with a mobility disability,” she said. “They were not sure what kind of accommodations I might need. There was a lack of confidence that this would be a good fit. The burden is on the student to prove they can do it. I had to come to interviews prepared with that information.”
So far, Fausone said, she hasn't needed many accommodations.
“I participated in dissections along with my classmates,” she said. “I used a scalpel and forceps. There are parts of a dissection that require a decent amount of strength. I would do more of the identifying, or cleaning up, or exposing important structures, rather than removing heavy or firmly attached parts of the body.”
Trevor Gerson, MD, a third-year neurology resident at the University of Kansas, said that most of his fellow residents and instructors have been exceptionally understanding about his need for occasional accommodations. In fact, he chose Chicago Medical School at Rosalind Franklin University, and the University of Kansas in Kansas City for his residency, because of the accepting attitude of staff and administrators.
Dr. Gerson has Ehlers-Danlos syndrome, an inherited disorder that affects connective tissue, primarily the skin, joints, and blood vessel walls. Symptoms include overly flexible joints that can dislocate, and skin that's translucent, elastic, and bruises easily. In some cases, there may be dilation and even rupture of major blood vessels.
“During my surgery rotation, it wasn't easy for me to lean over for a long time, because my shoulder will dislocate,” Dr. Gerson said. “And holding a heavy retractor for the entire surgery was not something I could do without a break. But I didn't have a whole lot of problems. If I needed to take a break, they would let me.”
Then again, one time during medical school, after hurting his back badly for a second time, he was lying on a treatment table when the pain medicine physician at the hospital walked in.
“You've done very well in medical school so far,” she told him, “but you need to find a research position because you're not going to make it through.”
“That lack of tact is something that needs to change in medicine,” he told Neurology Today.
Sonali Sen, MD, a child neurology resident in her fifth year at Boston Children's Hospital, began medical school at the University of Arizona a few months after undergoing surgery to remove a ganglioglioma. Within weeks of the surgery, she experienced her first tonic-clonic seizure. She showed up for classes still wearing a wrap around her head to protect her scalp.
“I had to advocate for extra time to take tests,” she said. “I didn't feel I was at the top of my game.”
Beginning in her second year, knowing that sleep loss could prompt a seizure, she asked that her work time be limited well short of the 30 hours that was standard. That prompted the medical school to invite a neurologist — not her own — to sit in on a meeting where her request was considered.
“They were a little bit hesitant,” Dr. Sen said. “It disrupts other people's schedules. It raises questions of why one person should get special treatment.”
But she was granted the accommodation, and said she is glad she stood up for herself. “You have to advocate for yourself if you have a chronic medical condition,” she said. “If you don't, nobody's going to advocate for you.”