An Interview with Mahesh Chandrasekar
By Nandini Ghosh
Mr. Mahesh Chandrasekar, International Policy and Campaigns Manager, Leonard Cheshire Disability; Co-chair of UN task group of International Disability and Development Consortium; Co-chair of BOND Disability and Development Task Group; Mahesh has a background in Sociology and Human Rights. He uses a wheelchair. In this email interview, he spoke to Nandini Ghosh:
Q: As the Head of International Policy and Campaigns in Disability for Leonard Cheshire, you come into regular contact with different groups of people – disabled and non-disabled. How do these people usually react to you? Do ideas regarding dis/ability affect you in the performance of your role?
A: I cannot really group the responses or reaction of people who I come in contact with. I often consider people’s reactions as a reflection of the way they present themselves. I have learnt to take my impairment lightly and make it humorous. I cut out the negativity and make an effort to connect with people.
There are different ways of looking at how my dis/ability influences the way I perform my role at work. My personal experiences of encountering various barriers prompts me to be sensitive to the needs of people, grounded, influences the way I communicate the issues and explain the discrimination experienced by persons with disabilities by reflecting life experiences. The barriers I have encountered in the past prompts me to be sensitive to the needs of people. My personal experiences keep me grounded and influence the way I communicate the issues and discrimination faced by people with disabilities in their life. This helps me question people’s attitudes and behavior and ensure that policy documents/ discussions are accessible and inclusive of persons with disabilities. I can say my dis/ability constantly guides me to be alert, innovative, take risks, face challenges, reach out and explore the unknown.
Q: Looking back in life, what kind of disabling ideologies did you have to face? How do people look upon you and treat you?
A: Like many, I have a mixed bag of experiences of challenging stereotypical perception of disability. Some of the humorous ones have been kind-hearted suggestions from those who feel sorry for me deciding when and what I should do; suggesting that it would be better if I stayed at home instead of watching a cricket match in a crowded stadium. There is always an element of surprise when I go to my son’s school to attend the parents-teachers meetings or a sports day event. When I travel by train on work or leisure, fellow passengers most often presume that I am going for a medical treatment and start speaking to my colleague to enquire about my condition. I am used to the worried expressions and dealing with people who doubt my ability. Some of the extremely negative and insensitive reactions have usually been by persons in authority and have often jeopardised my progress,. The attitudinal, institutional and physical barriers delayed me from completing my graduation by nearly 12 years,; get a disability certificate or a driving licence and travel by public transport. These interactions have been humiliating. They strip one of dignity and remind you of the consequences of disability. I sincerely hope we have robust mechanisms to address these hurdles and penalise persons perpetuating such practices.
Q: In your family, how did you deal with notions of independence and dependence regarding your daily life activities?
A: In my experience, in the Indian context, the care-giver, most often one of the parents or a spouse plays a vital role in the lives of persons with disabilities. Their lives more often out of compulsion rather than choice revolve around this person. Their aspirations and needs are often eclipsed in serving and catering to the daily life activities of the person with disability. Over the years the life of the primary care giver gets even further entangled- to the point where it becomes almost impossible to break this rhythm. It is important to be conscious of this fact and invest time in adjusting the home and work environment to enable the person with disability to be as independent as possible and ensure s/he is not entirely dependent on only one person to provide all the required assistance. As a wheelchair user, my family and I continue to make conscious efforts to make our house more accessible. We ensure that I have reasonable or independent access to the critical areas of the house such as access to water, sanitation, entering/ exiting the house. They are not perfect solutions however; they do reduce the physical burden on the care-giver.
Q: At a macro level, what are the structural dimensions of ableism that affect lives of persons with disabilities especially in India?
A: My response to one of the previous questions would also answer this as well.
During my interactions with different groups of people, I quite often encounter situations where people interject and speak on behalf of persons with disabilities. It is important to provide space and listen to the voice of the disabled as they have a different perspective And first hand life experiences of what works and on what needs to be done. Ignoring these voices, policy makers could come up with solutions and ideas that in many cases may not have the desired impact.
In order to demonstrate progress it is easy to count and report on the number of disabled people ‘benefiting’ from, for example, education. But if you ask the student with disability in the very institution, the reality could be very different: Students with disabilities often do not have appropriate support in the classes. The curriculum, learning materials and teaching methodologies are often not designed to meet their needs. They have limited opportunities to socialise with friends, get involved in sports or cultural activities. Furthermore, learning environments have limited access to basic facilities such as the washroom, the library, books; relevant information, transport etc. In some cases, there is limited support from the family as well. Finally when they graduate from school, they are not equipped enough to take on the next challenge of employment. Therefore the participation of persons with disabilities – representing cross disability, gender, children, youth while shaping policies/ legislations/ programmes and monitoring progress are key to building an inclusive society. And in many cases this does not happen and important decisions both in the family and community/ society are taken on behalf of persons with disabilities. It is essential to realize that persons with disabilities are not the problem to be addressed but are part of the solution in solving the issue.
Q: How does Indian society look upon intimate relationships of disabled people? How do disabled people themselves view intimacy? What are the issues around their sexuality?
A: Intimate relationship for persons with disabilities, especially for women with disabilities, is a challenge and often even a taboo in Indian society. By default we tend to live in a closed environment with limited opportunities for persons with disabilities to socialise during various stages of their lives. Parents by nature have greater worries about the safety and security of their children with disabilities. Thus, children with disabilities are often overprotected and not provided the opportunity to meet new people. Social norms in general and in particular, lack of access to public transport, schools, colleges, workspaces, cultural events, festivals and other social events further limits the opportunities for persons with disabilities to socialise.
In many cases when a person has a disability, their sexuality or intimate needs are overlooked. Culturally, it is easier for men with disability to openly express their needs which could force the family to respond. This may not be the case with women, who already face restrictions on their sexual needs in society. When it comes to women with disabilities, they can become even more imposing. Persons with disabilities, especially women, who break these norms could be ostracised by the family and community. It is easier said than done, but it is important for anyone, this including persons with disabilities to accept the way they are and feel positive and confident about themselves. One has to accept oneself before they can expect the same from others. This is where the family and community play an extremely important role. I consider education, economic independence, and a positive self-image can significantly decrease barriers for persons with disabilities in expressing themselves and for their families to accept.
Q: How have people with disabilities rallied around personal issues as collectives?
A: The barriers and negative attitudes that persons encounter on account of their impairment seem to resonate globally. This can be best used to build resilience and fuel social change.
The Convention on the Rights of Persons with Disabilities, the latest Human Rights convention, ratified by over 130 countries, provides a universal language and mechanism for full and effective participation and the realisation of the rights of persons with disabilities.
The Global Young Voices network, a cross-border initiative by the Leonard Cheshire Disability aims to mobilize young people with disabilities from all over the world to campaign and advocate for the rights of people with disabilities at local, national, regional, and international levels. The campaign is based on the belief that ‘nobody is better placed to advocate for the rights of persons with disabilities than young persons with disabilities, the leaders of tomorrow.’ The stimulus behind the network was the outstanding contribution by young disabled people during the negotiations which led to the Convention on the Rights of Persons with Disabilities at the UN. ‘Young Voices’ has become a genuine grassroots movement for the ratification and implementation of this convention. With currently 49 Young Voices groups active in 21 countries in Asia, Africa and the Americas, and a membership of over 1200 16-25 year olds, ‘Young Voices’ has developed into a successful global campaign.
Through campaigning, the ‘Young Voices’ network has a direct effect on the lives of people with disabilities and in their communities all over the world. The impact has ranged from reduced verbal abuse towards disabled people in Tanzania to making the architecture of the Forbidden City in China accessible to disabled people. ‘Young Voices’ has innovatively utilized mobile text messaging linked to social media to spur action against the denial of voting rights for disabled people in Sierra Leone. In India, the network has made polling stations accessible and initiated inclusive school exams.
The ‘Young Voices’ network has produced highly articulate, skilled human rights advocates who are capable of winning international, regional and national awards. For instance, Ashwini Angadi, the National Facilitator of the ‘Young Voices’ program in India, who faced enormous challenges accessing education due to her blindness, received the ‘Youth Courage Award’ at the UN Assembly on Malala Day, 12 July. The active actions of these activists continue to challenge stereotypes and redefine success.
[Dr. Nandini Ghosh is Assistant Professor of Sociology at the Institute of Development Studies Kolkata. She has a Ph. D. in Social Sciences from the Tata Institute of Social Sciences in the broad area of Gender and Disability Studies.]