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Patients find centre stage in competencies aimed to develop disability-inclusive compassionate care

For most people with disabilities, a visit to the doctor is usually a nightmarish experience. Many say they are insensitively treated, or spoken to in a manner that makes them feel awkward. In a worst case scenario, their treatment is in jeopardy.

Prajith Jaipal, a disability rights activist from Kerala and wheelchair user, says in his experience most doctors are unaware of the various health complications that people on wheelchairs face.

"I have been to many hospitals in Kerala as well as outside India, and I would say that 99% of doctors don't know of the additional health risks wheelchair users face", says Jaipal. "There is little care and consideration given and the problem starts at the stage where they study medicine. They go directly into treating patients or doing surgeries, with no awareness or training regarding disability".

This lack of training manifests itself in many ways. "Whenever I take my mom for her check-up, doctors presume I am the patient because I am in a wheelchair", says Shama Noorani Choudhary, an accessible travel specialist with Enable Travels.

"When i took my mom for a knee surgery, the doctor was asking my mom what my needs were. The other issue is that doctors never address you, but the person with you. They assume that because you are in a wheelchair you are mentally not up to the mark. There has to be an attitude change from the top down. The medical fraternity must realize that people with disabilities have feelings too", adds Choudhary.

Experiences like these took centre stage at a focused group discussion organized by the University of Chicago and the Medical Humanities Group of the University College of Medical Sciences in Delhi last week. The two are collaborating to develop a consensus on the disability competencies that should be acquired by health professionals during training.

The purpose is to define the standards for disability training so that people with disabilities have access to better health care. An absence that denied people with disabilities access to health care, a fundamental right, points out Abha Khetarpal, a counsellor for people with disabilities.

"Disability is such a wide and varied issue that it cannot be limited to one or two medical conditions. Even two people with the same disability have different needs. One may have problems with muscle power while another may have functionality related needs. For that matter doctors are not even well trained in how to give disability certificates in communicating with people who have intellectual disorders. This is an implicit denial of the right to health care", says Khetarpal.

In this context, it is necessary that doctors are trained to ask the right questions when they are treating a disabled patient, a perspective that is missing in the medical training syllabus put out by the Medical Council of India (MCI).

Even the new curriculum that was released by the MCI is not comprehensive because there was no attempt to take into account the perspective of doctors with disabilities while framing it, not even students who will be using it going ahead. The MCI curriculum does not take the human rights approach into consideration at all, nor the provisions of the RPWD Act 2016. That is why we decided to collaborate with the University of Chicago. - Dr Satendra Singh, Disability rights leader

The discussion highlighted these neglected voices, putting the experiences of patients with disabilities in the foreground. What came out were emotional, moving accounts of the indifference and apathy people are faced with at a time when they need care and attention. Many of those who spoke out were doctors with disabilities too.

Also present were experts with disabilities like deaf blindness who demonstrated verbal and non-verbal techniques to communicate empathetically with disabled patients and their caregivers.

All these accounts have been recorded on video and will be a key component of the modules that will be prepared and shared. "These 18 hours of recording are a goldmine", adds Dr Singh. "There is so much information of the discrimination faced, together with the voices of disability rights organizations. We have prepared 27 sets of competencies which can be used anywhere in the world."

The next step will be to prepare modules for Indian medical graduates, which will be based on experiential training. This is vital to reduce disparities while training, so that the barriers people with disabilities face while accessing clinical and preventive services reduce.

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