I became disabled person when I was 22 years old in a car accident. There was a very marked change in people’s behaviour towards me, and one of the first things that struck me was the charitable attitude of the “non-disabled” people towards persons with disabilities. I can recall clearly one incident that occurred not long after I became disabled that became a turning point in my life.
“While I was in the queue to enter the temple at Haridwar, a poor middle-aged woman from the village walked up to me and handed me a twenty-five paise coin. I was sitting casually dressed in a nice T-shirt and trousers, and I looked up at her confused. Why was she giving me money? My instinctive reaction was to fumble out: ‘No, no! This is not mine.’ I thought that she imagined I had dropped the coin and was returning it. But before other words could come out of my mouth, the woman had left. For several moments, I just sat there, looking at the coin in my hand and the lady walking away. It took time for my brain to analyse what had just happened. This was something that had never happened to me before, and I had not imagined that it would ever happen—she had thought that I was a beggar! The only thing that distinguished me from everyone else there was my using a wheelchair. The woman had thought me a beggar simply because I was disabled! She had assumed that because I was disabled I was needy. I did not know how to react—whether to laugh at her naiveté, or feel sad about what I had been reduced to. With her one little ‘charitable’ act, the woman had managed to make me question my own being. I laughed off the incident, deciding to keep the coin as a reminder of this bizarre encounter. In reality, however, that was a defining moment of my life. It was a reaffirmation of what I had always been aware and conscious of—that people judged me on my outward appearance alone. No one seemed to have the time or inclination to get to know me as a person, with my own strengths and weaknesses, just like anybody else. Providing me with charity was probably much easier than to try and really understand what I needed. As I look back today, after two decades, I still see the same charity being distributed in so many different ways to people with disabilities. So much so that most governmental programmes for people with disabilities revolve around concessions and reservations—that is far easier to offer instead of creating a enabling environment and equal opportunities that would allow them to nurture their abilities and become equal members of society.”
(Excerpt from ‘No Looking Back – a true story’ authored by Shivani Gupta Published by Rupa Publications)
Ever since, my struggle has been to dispel this charity. One of the main reasons for this charitable attitude is because disabled people are unable to participate in regular activities such as education, employment, entertainment etc. due to their inaccessibility and very importantly, peoples’ attitudes. These result from lack of various basic aspects such as suitable physical infrastructure, access to information and communication, access to the public transport system and general public awareness. Lack of accessibility results in the denial of basic rights of persons with disabilities.
Driven by the importance of accessibility for persons with disabilities, I enrolled as a full time student for a diploma in architecture technology at the age of 32, and followed it through with a post graduation in Inclusive Environments from the UK. On my return I started AccessAbility (www.AccessAbility.co.in), which provides consultancy to service providers and employers looking at making their service or work place more accessible and welcoming to persons with disabilities. Initially, we had apprehensions if we would get clients who would be willing to pay for our services especially because disabled people are not perceived as patrons by businesses. However, we found takers in businesses who saw value in improving accessibility and some of whom include the ITC Hotels, Indian School of Business, Select Citywalk Mall, UNDP office, Hyderabad Central University, Chennai Mathematical Institute, to name a few.
“It was after understanding the importance of access that I could analyse the horrible experience of visiting the Kanyakumari temple in a different light. A couple of years ago, I had visited the temple with colleagues from the centre. I wasn’t allowed to enter the temple in my wheelchair as it was considered impure. After a great deal of hesitation, I allowed one of my colleagues to carry me in his arms to have darshan of Goddess Kanyakumari. I didn’t know better, so I agreed to be carried; but it was one of the most humiliating and embarrassing experiences of my life. Everybody ogled at us as my colleague carried me. Another colleague walked along with us, assuring each person who stared that I couldn’t walk. It was quite a long way till the deity, and the only thing I was glad about was that I wasn’t too heavy during those days and that the pandits were ‘considerate’ enough to not make us wait in the queue to get in. Now, after this training, I could finally appreciate how justified was my anger at the humiliation I had been made to face—simply because of inaccessibility and the insensitive policy that did not allow me in my wheelchair. Anger was something that I had never really felt before when faced with discrimination. I had been humiliated, made to feel sorry for myself and torn to pieces countless times when, because of inaccessibility, I was either excluded from things or I had to take help from someone—but I had never outwardly expressed my anger over this till now. With the knowledge of non-handicapping environments and better understanding of my rights came anger with the system: why could it not provide a simple thing such as an accessible environment to me so that, as a disabled person, my life could be easier?”
(Excerpt from ‘No Looking Back – a true story’ authored by Shivani Gupta Published by Rupa Publications)
It is unfortunate that people with disabilities get left out, often as a result of poor design or being excluded at the planning stage. Not intentional, one understands but there is little being done to arrest such exclusion. Government policies show apathy towards disability rights. Even after ratifying the Convention on Rights of Persons with Disabilities, the government outlook is pegged on charity and social protection rather the equal rights and opportunities. Building bylaws in all States and Union Territories of our country do not mandate accessibility and building permits are given even if they are inaccessible. We do not have accessibility standards and the government procurement system does not ensure that tender specifications look at accessibility for disabled people.
Disability must be looked at as a developmental issue and must be addressed in all development agendas. For instance all government projects, schemes and plans must address inclusion of persons with disabilities. It is sad that flagship programmes such as Jawaharlal Nehru National Urban Renewal Mission do not mandate accessibility for persons with disabilities, thereby continuing to create barriers for them and preventing their inclusion.
The move towards recognizing disabled people as equal right holders is extremely slow. Often people are uncomfortable interacting with disabled people because of lack of awareness and also because disabled people are often not seen out and about, because of inaccessibility. From my experience I can say that it is not the impairment that disables us, but the inaccessible environment and strange attitudes and misconceptions that are disabling. There is a long way to go. Persons with disabilities cannot walk the way alone, the government and the society at large must walk hand in hand with them to bring about some meaningful change towards creating a more inclusive environment.
Having adequate and appropriate support in the community is important for neutralising isolation faced by persons with disabilities and giving them control over their lives. It is a core requirement for the realisation of article 19 of the Convention on the rights of persons with disabilities (CRPD). The CRPD proposes a shift from a medical approach where persons with disabilities are considered passive recipient of care to a more to a rights based approach where support enables persons with disabilities to have control over their life. Implementing these global standards for support provision are not easy to achieve for low and middle income countries. Further, models of service provision that exist in the more developed countries may not be best suited for low and middle income countries for several reasons including social and cultural differences in the way individuals, families and communities function. For instance, persons with disabilities in rural India did not feel the need for a personal assistant rather felt having external support for their primary caregiver and to assist them to go out of their homes was adequate.
The family mostly looks after persons with disabilities in low and middle income countries. Very often they are not expected to create a separate life away from their family (Oka 1988). This perception may be more true in case of persons disabilities facing additional intersectional challenges such as persons requiring high level of support, socio-economic background of the family, gender, development of the community they are a part of etc. Yet the significance of informal support that persons with disabilities receive from their family cannot be undermined yet studies show that there are adverse social, mental and physical health affects on both the support provider and receiver in the long-term [WHO 2012; 2002; Evercare 2007]. Therefore there is a need to look at culturally appropriate models of support provision for persons with disabilities that are economically viable for governments to implement.
While there is no data on the number of low and middle income countries that have policies relating to formal support services but one may safely say that they would be very few. Further policy framework of several countries have a paternalistic approach ignoring the right of persons with disabilities to have choice and control in the way they live. Some countries make the families legally responsible to supporting persons with disabilities supporting the informal support system. Some countries offer or are beginning to offer caregivers allowance but that again is favoring the family support because there are no formal support systems available in the market. Not only the governments but also the persons with disabilities do not demand for additional support systems. However the reasons for persons with disabilities not demanding for additional support system may not be rooted in their satisfaction with the present support available but more in the disfranchised they feel within their families and communities.
Lack of support places persons with disabilities is an isolation trap. They live in a vicious circle that perpetuates their sense of dependency and uselessness. Being dependent on the family made the persons with disabilities feel like a burden denying them autonomy in their daily life. Further not having adequate support also denies them opportunities of social participation and inclusion that isolated them. Their community member have poor perception of them and are rarely involved with their life. This sense of dependency and social isolation is known to reduce the self-esteem of persons with disabilities and impact their mental well-being. Moreover, government efforts and community based programmes mostly remain largely segregated and do not foster inclusion of persons with disabilities.
Lack of adequate support can deprive persons with disabilities basic human rights having support on the other hand is key for the inclusion of persons with disabilities. Therefore, low and middle income countries should make big efforts towards create support options apart from just the family to really achieve the aim of inclusion. The responsibility of creating support option cannot be left with the government alone. It has to be shared by all stakeholders such as persons with disabilities, families, community members, NGO’s, the government etc. for the support system to foster inclusion. Efforts need to be made towards increasing self esteem of persons with disabilities so that they see themselves as valuable members of their family and community. Their self awareness may spark the desire for a better life outcome to them. Community members together with family members may be catalyzed to increase the circle of support that persons with disabilities have. This may also work towards communities becoming more aware and responsive towards persons with disabilities. Community based programmes may be relooked at their work to see if they promote self-awareness of persons with disabilities and promote the involvement of the community. The government may look at creating not only a formal support services system but also creates an ecosystem that fosters natural support networks to develop within the community.
To conclude, there is an urgency to work towards improving the amount and quality of support that is available to persons with disabilities in low and middle-income countries. The support systems developed need to be culturally and economically viable for the countries to implement. Models of personal assistance from the west may not be replicable in these countries. Further research may be undertaken to see how the community can be more involved in the life of persons with disabilities. Models of forming circles of care in the community for supporting persons with disabilities may be investigated deeper to see how they form, function and their impact on the lives of persons with disabilities, their families and on the community members. These may prove to be a viable option for increasing the support options for persons with disabilities and also promote inclusion since a larger number of people would be involved in supporting.
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