Author: Veronica Quikiumaliu Wijunamai, Communication and Documentation Associate- Inclusive-Cities Centre

Persons with disabilities have for long been stigmatized and discriminated against for their disability. Remarks like ‘What would the child do if the parents are gone? ‘Poor child, their life is ruined’ are heard in passing. Sometimes, it escalates to parents, particularly the mother being blamed for birthing a disabled child. There have been instances where the families of persons with disabilities deny the presence of a disabled family member for the fear of losing their status/reputation in society. In some religious traditions, they are considered as a curse or ‘wrath of god’ over past sins/wrongdoings. Although this perception might not be so common anymore, the underlying thoughts are still seen to be prevalent. In societies across all cultures, disability is often glorified or looked down upon. This is even more prominent in developing countries where there is very little awareness with respect to disabilities. As a matter of fact, while we move towards building universally accessible urban India, we still struggle to address the attitudinal and social barriers that are often embedded within individuals and are anchored to cultural and religious beliefs. These barriers often transcend socio-cultural constructs and impact an individual's socio-economic growth of persons with disabilities. Irrespective of the laws by the state to protect the rights of persons with disabilities, the prevailing stigmas results in a denial of rights, resources and participation. This reminds me of an anecdote from my field experiences of a middle-aged woman who exuded self-confidence, knowledge and conviction and was also the mother of an eight-year-old child with cerebral palsy. She ensured that her son received regular therapies and treatments. But despite the virtuous aura, she often felt ostracised for having a son with a disability. She would share instances where she and her son was made to feel inferior to other ‘normal people’ by the remarks and comments of her neighbours. The interaction translates into a narrative that exists in our society where we either glorify disability or we look at disability from a charity perspective, where they are stigmatised and pitied for having a disability.

As given in the case above, despite having the resources to provide for rehabilitation, the child and his mother were still made to feel alienated.  Stigma, commonly define as ‘a mark of disdain associated with a particular circumstance or quality’ often stems from fear or the lack of understanding and can be often amplified by misleading information. At present, with the enactment of the RPwD Act 2016, Indian cities have moved toward a right-based approach. We have seen  a great improvement in terms of building accessible infrastructure.  However, challenges persist in addressing the attitudinal barriers. There is an overall lack of empathy amongst citizens (inclusive of city stakeholders) to understand aspects of disability. What might be seen as a negative differential treatment can be therefore translated into further marginalisation of persons with disabilities. The American Psychiatric Association (APA) propounds that stigmas propagate stereotypes and prejudices which then results in discrimination. These stigmas can also manifest threeway; through public, self-internalisation and institutional. In the case of disability, these can be manifested through the public opinion that a person with disabilities is incompetent; an individual internalising that they have no place in the society, therefore cannot/ should not exercise their rights, which then permeates into institutions (which are constituted by citizens).

To this extent, while there are 28.6 million persons with disabilities in India, they still are a minority and yet a diverse group. For individuals to be comfortable with their disability and live a life where their aspirations are met, an enabling environment has to be created. Moreover, for an institution, in this case, the state, to take action or formulate certain interventions, a particular need has to be felt. When a  collective empathy does not prevail or in other words, when there is no consensus that the inclusion of a person with disabilities is necessary, there would not be any definite actions taken for their inclusion. There is a requirement for people to be empathetic towards the challenges faced by persons with disabilities;  societies at large must act as enablers and not barriers for persons with disabilities. Sensitisation of stakeholders at all levels- individuals, community and city level becomes crucial to ensure individuals or their families/caregivers are not stigmatised based on their disability. Furthermore, when people are sensitized, there is an increased level of awareness on what should be ‘ideally’ done. It serves as a civic tool to monitor the implementation of services and provisions. One example of this is the Citizen Report Cards  (CRC) which has shown great results in cities like Bangalore to improve public services. The very tenets of CRC are built on the aspect that citizens are made aware of their rights and responsibilities. This allows them to provide constructive feedback on the quality of services provided, thereby helping to improve the public service delivery system. Similarly, empathy coupled with awareness will not only bring inclusive change but also strengthen the system of monitoring and improving services for persons with disabilities. 

For a dialogue on inclusion to be initiated, it requires taking along all people- citizenry, policymakers, decision-makers, planners and builders- in this endeavour.  Efforts should be made at all levels to make others understand the importance of disability inclusion. Stakeholder mapping needs to be done to identify the entry points to all sectors and levels. Community workers should be onboarded to make changes at the grassroots levels. Campaigns that reach the most marginalised need to be designed.  In the case of large scale organisations (both private and public)  an advisory committee should be formulated to ensure that the disability agenda is put across all levels. Periodic sensitisation training of line departments, ULBs needs to be conducted. These discussions should be continuous and not sporadic. Ground-up stories on exclusions, stigmatisation and discrimination need to be highlighted. Schools should have curriculums on disability inclusion. While sensitisation might not be ‘the’ way it is one of the key means to achieve inclusion. Cities' infrastructure might be made accessible for persons with disabilities but it needs sensitisation and a change in the attitude of people to make it inclusive. An inclusive city can only be achieved when all people feel included and belonged.

Author: Veronica Quikiumaliu Wijunamai, Communication and Documentation Associate- Inclusive-Cities Centre

References:

• Retief, Marno, and Rantoa Letšosa. "Models of disability: A brief overview." HTS Teologiese Studies/Theological Studies 74, no. 1 (2018).
• Janardhana, N., and D. M. Naidu. "Stigma and Discrimination experiences by families of mentally ill-Victims of mental illness." Contemp Soc Work J 3 (2011): 83-8.
• “Stigma, Prejudice and Discrimination Against People with Mental Illness.” Stigma and discrimination. Accessed February 23, 2022. https://www.psychiatry.org/patients-families/stigma-and-discrimination.