One doctor’s disability may lead to curriculum change in IndiaBMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l4215 (Published 25 June 2019) Cite this as: BMJ 2019;365:l4215
Satendra Singh, 42, cannot remember walking unaided. After contracting polio at nine months old, he spent a lot of his childhood in hospitals and getting fittings for leg braces.
He remembers always being late for classes as a medical student. “It used to take me 20 extra minutes to walk across the corridors and climb a flight of stairs,” Singh, who now teaches physiology at the University College of Medical Sciences (UCMS) and Guru Teg Bahadur Hospital, in New Delhi, told The BMJ. “Back then, I had no idea about my right to accessibility as a person with a disability,” says Singh.
But when his application for a teaching job at a medical school was rejected by a government organisation, something snapped.
“I was told that people with disabilities weren’t suitable to take on the role of teachers in medical colleges,” says Singh, who was already employed as a physician with UCMS at the time. “I was shocked, as no one had questioned my competence throughout my undergraduate and postgraduate studies or even as faculty in UCMS.”
Opportunities for doctors with disabilities, even in developed countries, can be limited. In the UK, for example, the General Medical Council has recently been encouraging medical educators to support disabled students.1
Singh was distraught. “I already had a secure government job, but I thought—what about others who are jobless and are screened out?” he says.
After he wrote a letter of complaint to the health ministry, the college allowed him to reapply, but he wasn’t hired. He continued, pressing the government to allow physicians with disabilities to apply for other jobs, and in 2014 the ministry opened up 1674 posts to applicants with disabilities.
“It was a long struggle, but I felt a great sense of relief and satisfaction when I was successful,” says Singh.
Today, after persuading the Delhi government to make hospital websites disability friendly and electoral booths accessible, and winning the Henry Viscardi Award for his work,2 Singh is still teaching at UCMS in Delhi, and is fighting to include disability competencies in the Indian medical undergraduate curriculum. He wants future doctors to have both the information and the ability to manage disabilities with the right attitude and sensitivity.
A problem that needs to be fixed?
As in most other countries in the world, India’s medical school curriculum does not cover the rights of people with disabilities well—but it should, says Singh. The United Nations’ Convention on the Rights of Persons with Disabilities3 includes respect for dignity, independence, and the freedom to make one’s own choices. India ratified the international treaty in 2007.
Ten years later, India’s Rights of Persons with Disabilities Act4 came into force. It states that the rights of people with disabilities should be included in curriculums in universities, colleges, and schools.
“However, doctors in India have so far studied a course which looks at disability as a problem that needs to be fixed,” Singh says.
Often, when a patient with a disability visits a doctor with an ailment, the focus is on their disability and not the illness.
That’s what happened to Alim Chandani, an activist and founder of Access Mantra, a resource and innovation centre for the deaf in New Delhi.
When Chandani visited an ear, nose, and throat specialist in New Delhi about a persistent infection, he was asked if he wanted a cochlear implant to correct his deafness. He was surprised that the doctor focused on his disability when he was asking for treatment for his sore throat. “I laughed and told him that I’m happy the way I am,” Chandani told The BMJ.
Abha Khetarpal, president of Cross the Hurdles, an organisation that works for disability rights, had several unpleasant experiences as a teenager. While taking photos of her back, which had been disfigured by polio, doctors would undress her without consent. “There would be no female doctors and my mother wasn’t permitted inside, so the experience was traumatic for me,” Khetarpal, who has worked extensively on the sexual health of women with disabilities, told The BMJ.
“For some healthcare professionals, disability is synonymous with illness,” says Khetarpal. She uses a wheelchair for mobility. “Even if I go to a hospital to visit someone, I’m mistaken for a patient.”
During her research on the sexual health of women with disabilities, Khetarpal has found that they are often not informed about pelvic examinations, a must for wheelchair users, who are prone to vaginal fungal infections. Since they are not considered to be sexually active, they’re often excluded from screening programmes and routine examinations like cervical smears.
Many healthcare facilities lack ramps, lifts with audio output, wheelchair accessible mammography machines, and washrooms with low seats and grab bars. “Even the top hospitals in New Delhi don’t have sign language interpreters. How could a low literate deaf person who cannot write give consent for emergency surgery?” asked Singh.
Singh knows directly, and from speaking with other people with disabilities, that inaccessibility and unpleasant experiences keep many from visiting doctors’ clinics or hospitals unless it’s an emergency.
A widespread problem
According to the World Health Organization’s 2011 report,5 while people with disabilities have the same healthcare needs as anyone else, they are twice as likely to find the providers’ skills and facilities inadequate, three times more likely to be denied healthcare, and can expect bad treatment in healthcare settings four times more often than others.
In 2016, Singh, who co-founded the Medical Humanities Group at UCMS, heard the Medical Council of India (MCI), which sets medical school programmes of study, was interested in switching to a competency based curriculum. Along with colleagues at the Bucksbaum Institute for Clinical Excellence at the University of Chicago, he received a $22 000 (£17 000; €20 000) grant from the University of Chicago Center in New Delhi for the Disability Inclusive Compassionate Care Project.
The idea was to prepare a globally relevant component on disability for the medical curriculum. “Our proposal was unique because across the world there are no disability competencies for healthcare providers framed in consultation with real stakeholders,” says Singh, who looked closely at the competency based curriculums of Canada, the UK, and the US for the project.
The proposed curriculum is compliant with the UN’s disability guidelines.
The development of the competencies started in September 2018, when Singh and a colleague visited the University of Chicago Medical Center to talk with patients who came to the adult developmental disabilities clinic. Kamala Cotts, the clinic’s internal medicine residency director, worked on the curriculum with Singh.
In November, they conducted focus group discussions with doctors with disabilities, medical educators, and disability rights activists from across India. Ultimately, 27 competencies were developed. They include ways to accommodate people with disabilities, knowing what government programmes could help patients, and how to avoid discrimination.
The competencies could either be taught in the one month foundation course at the beginning of the first year, spread throughout the course, or as one of the two one month electives after the fourth year, for which every Indian college can create its own content.
Cotts, who will work on the integration of the competencies first in her institute and later in other medical curriculums in the US, told The BMJ: “The purpose of the curriculum is to promote equity and social justice and it should do that well, if properly implemented.”
One of the listed competencies encourages genetic testing and counselling for families predisposed to a genetic disability. Muscular dystrophy, for example, could be diagnosed by genetic testing during an antenatal check-up. Early treatment could reduce symptoms and slow the progression of the disease. Similarly, genetic counselling could help a parent understand the risk of having a child with haemophilia.
Information and management of the sexual health of people with disabilities are also included as a competency. Many times, doctors do not know precautions related to specific disabilities, for example that women who use wheelchairs should not be prescribed contraceptive pills that might put them at risk of blood clots.
The syllabus also states that the autonomy of patients with disabilities should be respected and doctors should strive for shared decisions.
In India, change may be coming
Altering the medical curriculum is complicated in India, but change may be coming soon. Recently, the MCI forwarded a letter from the chief commissioner of persons with disabilities along with Singh’s proposed curriculum to medical colleges and universities, asking them to follow a curriculum inclusive of disability.
A new curriculum to be rolled out in August in response to India’s disability rights law includes some training, but Singh is only partly satisfied. It includes teaching about diagnosis and treatment for some disabilities, but not how to help patients with disabilities deal with the stigma they encounter. “It treats disability as a medical condition, with no human rights approach,” he says.
Assistant director general for medical education at the Directorate General of Health Services, B Srinivas, who is responsible for the final approval of MCI’s curriculum before it is sent to colleges, says that the health ministry is in favour of the addition of disability competencies. “If the MCI includes the competencies in the curriculum, the ministry will approve it right away,” Srinivas told The BMJ.
Avinash Supe, the chairman of the reconciliation board of MCI—which drafted the curriculum—says that if the board approves it, he would be happy to include the competencies in this year’s curriculum. With the new disability rights law in place and pressure from the commissioner’s office, Singh says there’s a good chance the competencies will be included.
In case that doesn’t happen, however, Singh says that he would create specific modules—to be used in his university and other interested Indian universities—for the month long electives the new medical curriculum has opened up for fourth year students. Apart from videos and narratives, the module would be full of interactions with people with disabilities, through visits to schools for blind, deaf, and autistic children, leprosy homes, and mental health clinics.
“We want the students to enjoy an interactive course, and at the same time appreciate that the people they meet have the same rights as everyone else,” he says.
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.