Since 1959 the UN has designated international days in order to draw attention to major issues, and to encourage international action to address concerns that have global importance and ramifications. Thanks to the international community, disability as a human rights issue also gained international recognition and we as disabled community get the opportunity to, at least, make our voices heard on this day. I am wheelchair bound since 1987 due to spinal injury at level c7/6 that resulted from a car accident. Every year I have actively participated on this day and tried to celebrate it with other physically challenged individuals in order to have one common and strong voice, and to strengthen our representation irrespective of the theme selected by the international community. This year the theme for the World Disability Day is “Not All Disabilities are Visible.” One cannot help but wonder what this theme means in the context to our country where the needs of the most visibly disabled people have gone unnoticed for most part.
The year 1995 marked the signing of the UN Declaration on the Rights of Disabled Persons. This declaration provides a framework for equal treatment of disabled people. It mentions disabled people need to be seen and valued as full human, and where needed, to be supported to reach their full potential. Soon after, the UN Convention on the Rights of People with Disabilities (CRPD) ratified in April 2008 provided a new instrument in ensuring equal opportunities for disabled people (refer to UN.Org/disabilities). It is a binding instrument on all governments to ensure the protection of rights of their disabled citizens. Coincidentally, India was the first country in South Asia to become a signatory to the proclamation on the full participation and equality of people with disabilities. It is nearing thirteen years since India signed the proclamation on the full participation and equality of people with disabilities, making special mention of the need to improve the living conditions of people with disabilities. The proclamation made a special mention of the need to improve the living conditions of people with disabilities in rural areas. A recent article, “Disabled & Extremely Poor” in The Hindu (Chandigarh edition) by Vani S. Kulkarni (lecturer in Sociology) and Raghav Gaiha (Research Fellow), dated March 6th, 2020, best presents India’s current situation more than a decade after signing the proclamation. Disabilities are generally associated with either loss of employment or long durations of unemployment that gives rise to poverty. The article notes that, “there is a link between disability, loss of employment and impoverishment in rural India”, and concludes that “ironically the budget for 2020-21 is almost cruel to those experiencing persistent health deprivation by cutting the health outlay.” However, it is unfortunate that approximately 70 million potential workforce in India is estimated wasted due to disability presently. The implementation and enforcement of the rights provided under the legislation will provide meaning to such a commitment.
One objective of the World Disability Day is to promote an understanding of disability issues and mobilize support for the rights, dignity and well-being of disabled people; their integration in every aspect of political, social, economic and cultural life. Currently, the integration suffers as other people decide what is good for disabled people without consulting them. To top it all, the indifference of our government does not help. I believe change may have to spring from families that are hit with this issue. Once families take responsibilities, society at large will gradually and automatically change. Normal children have to be given lectures on disability in schools. Inclusive school concept is an answer to a lot of our problems but it involves a lot of challenges that can be solved with public-outreach and education so that the concept is understood and accepted.
My observations when dealing with disabled children and their parents at the Voluntary Medicare Society (VMS), an NGO where I volunteer for few hours every day, show that the parents devout a lot of their resources on non-disabled children at the cost of disabled ones. This unequal treatment combined with the prevalence of negative attitudes within the non-disabled members of the family, including parents, are the biggest obstacles to the full participation of disabled children. As a result, many disabled children often remain hidden from public view and are forgotten. The NGOs addressing disability issues can play a vital role in the awareness sector. At the VMS, an NGO dedicated to the uplift of physically challenged since 1970 and experienced in dealing with the disabled of different categories, many patients have restored to living independently and maximized restoring to normal life activities with the help of comprehensive post healthcare management plan. The trained staff at VMS demystifies the realities of living in the community by addressing not just the medical aspect but also practical, emotional and social concerns of the patients. Issues like relationships, security and confidentiality particularly between partners, private space, children and parental roles are discussed in detail. The VMS as an institution is accessible for any kind of disabled person. Its success is due to the complete devotion of its staff that is guided by knowledgeable board members, and above all by its founder and president Dr. M. Maqbool Mir (rtd).
It should be understood that a disable condition does not only affect an individual at a physical or mental level but also shatters his/her whole family life.The Central Government has passed the Disabilities Equal Opportunities Acts, but the resource allotment has never been adequate to achieve even the bare minimum as laid down in the Acts. Sufficient funds with budget details under each head need to be earmarked and its implementation monitored after intervals like for any other govt. projects. Giving a meagre amount of Rs.1000 per month is ridiculous and waste of money. At least, part of the action by the Government could be taken right now that does not involve cash, whereby certain implementing agencies like urban bodies could be directed as per the Act to decline permit for buildings lacking appropriate facilities for physically challenged persons. Government institutions could be role models and start from their own newly earmarked building projects. In India, physically challenged will not automatically have a better quality of life because of legislation only.
On World Disability Day, governments conduct functions, talk about the provisions of the Act, and may even distribute few aids mostly relating to locomotor disabilities. These functions have proven to be mere political show without follow-up action. While many organizations celebrate the World Disability Day to raise public awareness, it is about time that it also becomes a day of introspection on the process of implementation of schemes developed to benefit the physically challenged.
We are all physically disabled at some point in our lives. Like a child, a person with a broken leg, a parent with a pram, an elderly person, etc. may all be considered disabled in one way or another. Those who remain healthy and able-bodied their entire lives are few. As far as the built-up environment is concerned, it is important that it is barrier-free and adapted to fulfill the needs of all people equally. As a matter of fact, the needs of the disabled coincide with the needs of the majority, and all people are at ease with them. As such, planning for the majority implies planning for people with varying abilities and disabilities.
Providing for the disabled should be integral to our nation’s development and not pushed aside as a matter of pity and charity. That is the only way forward to ensure sustainable future. I am often reminded of human rights activist, Albie Sachs’s words, who said “No one gives us rights, we win them in struggle. They exist in our hearts before they exist on paper.”
Khurshid Ahmad Malik, former IAS officer who retired as Commissioner Secretary to Government, suffered spinal injury in a road accident and is wheelchair-bound since then. He is vice President, VMS, Bemina Srinagar