The United Nations has described people with disability (PwD) as the “world’s largest minority”. The world report on disability states that one in seven people globally experience some form of disability. Even the non-disabled can have temporary disability at any time of their life. Disabled elderly make up half the disabled population in India.
Estimates from the International Longevity Centre show that the population of elderly people in India is set to increase by over 55 per cent by 2050 and those above 80 will go up by 326 per cent in the same year. In a remarkable coincidence the International Day of Older Persons and the day India ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) fall on the same date – 1st October. The similarity ends here as the population of elderly is growing, majority of the medical institutions and hospitals in India remain disabled-unfriendly and efforts on implementing the Convention are static, if not on a downhill.
Despite people with disabilities being the world’s largest minority, little efforts are made to mainstream them. The problem is compounded with barriers to healthcare delivery — be it Apollo Hospitals or AIIMS (All India Institute of Medical Sciences) none of the medical care institutions in India is completely barrier-free.
Despite being the PwD Act, 1995 in place, which mandates all public places to be accessible, we still have to fight for accessibility. Strangely, I had to fight for my right to movement. My little efforts forced the Medical Council of India (MCI) to pass directives to all the medical institutions in India to be disabled friendly. One per cent of medical institutions which did reply (submitted the compliance report) had no idea of ‘accessibility’. To them it was creating ramps only. Nobody thought about making the hospital website accessible to visual impaired patients, dealing with hearing impaired patients, adjusting examining table to suitable heights, making mammography machines accessible to females with disabilities, having coloured line system to help patients reach the emergency room or the OPD etc.
The UN Convention mandates India to ensure “reasonable accommodation” of the rights of disabled. The inaccessible conditions violate the right to education (article 24) and the rights to live independently and participate fully in life (article 19 and 27). Since the Government of India gives financial assistance under the SIPDA (Scheme for the Implementation of PwD Act) scheme to make the building barrier-free, there should be no excuse on the part of universities, institutions or colleges not to make their campuses barrier-free.
The UGC (University Grants Commission) allots funds to so many health universities and medical colleges but how many of them have implemented its guidelines? Apart from the University College of Medical Sciences (UCMS), Delhi no other medical college in India has an Enabling Unit / Equal Opportunity Cell despite guidelines from the UGC.
Despite an order from the Prime Minister’s Office, the Chief Commissioner for Persons with Disabilities (CCPD) and guidelines issued by the NIC (National Informatics Centre) to make all the government websites accessible to the citizens/persons with disabilities, which hospital has made its website accessible to persons with visual impairments?
A simple solution to all this is adopting a universal design, which will benefit all and not only disabled. My persistence with the MCI on making health institutions accessible and my advocacy of a universal design led the NCPEDP (National Centre for Promotion of Employment for Disabled People) to select me for this year’s Universal Design Awards given by Minister of State for Social Justice and Empowerment P Balram Naik.
Train all healthcare workers in disability issues including rights and empathy
Even if we take care of physical barriers, the main hurdle will remain attitudinal barrier. Our medical curriculum still talks about ‘medical model of disability’ rather than ‘social model of disability.’ Hope has been raised by India ratifying the UNCRPD which is an international human right treaty focusing on the ‘social model of disability.’
Healthcare professionals can help improve healthcare for disabled through disability studies, a multi-disciplinary field of enquiry that draws on the experiences and perspectives of people with disabilities to address discrimination. Doctors need to look beyond the medical model of disability and embrace the ‘social model’ of disability, which can be expanded to chronic illnesses and to the broader work of the medial humanities. Today’s medical student should learn how Jacob Bolotin (born blind) fought his way into and through the Chicago College of Medicine, and became the world’s first totally blind physician. At the UCMS, we started a Medical Humanities Group in 2009 which was the first such endeavour in any medical institute in the country. I later formed a disability subgroup by the name of ‘Infinite Ability.’
We organised a ‘Blind with Camera’ workshop for the visually impaired students of the University of Delhi. The exhibition was made truly ‘inclusive’ to both blind and sighted by displaying pictures in accessible ways (touch-and-feel images, audio description of images, Braille notes, large prints and visual-aids) along with normal photographs. It was a classic example of Universal Design.
We also organised the first ever ‘Theatre of the Oppressed’ workshop for medical students. The forum theatre on ‘Abandonment’ highlighted the plight of a abandoned senior citizen and how audience provided community solution to the situation. We have also submitted a two-week module on Disability Studies to the UGC.
Unlike in the western countries where equality for the disabled is taught at schools and home, the cultural perception of India is still so narrow and orthodox that the needs of children with disabilities are viewed as welfare rather than equality of opportunity. This is clearly depicted with the division in our country that the special schools fall under the responsibility of the MSJE (Ministry of Social Justice and Empowerment), while children in mainstream schools come under the Department of Education in the Ministry of Human Resource Development (MHRD). This further widens the gap between disabled and non-disabled and prevents inclusion. Based on my representation, the CCPD has written to the MHRD to promote inclusive education.
There is also a need to humanise ‘International Symbol of Access’ and my representation on the same has reached the Department of Disability Affairs and the Vice Chancellor, University of Delhi.
Invest in rehabilitation
The need of the hour is to have a Physical Medicine and Rehabilitation (PMR) Department in every medical institution. Despite the MCI’s orders, only a handful of hospitals have PMR department. Similarly, many hospitals do not have Developmental Disabilities Clinic because of which much treatable impairment become permanent disabilities.
Make healthcare affordable
Globally, 70 million people need a wheelchair but only 5-15 per cent has access to one. About 360 million people globally have moderate to profound hearing loss but the current production of hearing aids meets only 3 per cent of the developing countries’ needs. The cost of assistive devices is still high in India and we need to work on more cost effective devices. Moreover, free devices available through various schemes come with a tedious process. I earlier highlighted the Red Cross procedure where a disabled has to go to multiple checks despite possessing a valid disability certificate. The Red Cross Society Secretary acknowledged the fact and vowed to adopt a simplified procedure and not cause unnecessary harassment to disabled persons.
Making all healthcare services accessible to PwD is achievable and will reduce unacceptable health disparities. This year, the theme of International Day of Persons with Disabilities, is: “Break barriers, open doors: for an inclusive society for all.” But to reach there we have to change our mindset first of all.