Disability Definition to Certification: The Hard Reality
By Praveen Kumar
In India, the definition of disability governs identity, and, thereby, the existence of persons with disabilities. According to the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995, disability refers to seven different conditions namely blindness, low vision, hearing impairment, speech impairment, locomotor disability, mental retardation, mental illness and leprosy cured. This has applied for almost two decades now, and the certification of disability is governed by this norm. Further, the certification has an impact on the benefits for persons with disabilities including social security pensions, allocation in poverty alleviation schemes, and other travel concessions.
In my experience of working in rural parts of the country, I have noted that large sections of disabled people and their families are not aware of the definition of persons with disabilities according to the PWD Act, leave alone about the current progress on the debate for the new bill, with which few fortunate people with disabilities are associated. The government has proposed a broader definition of disability in the Rights of Persons with Disability (RPD) Bill 2014, which is a departure from previous legislation, and includes autism, low vision and blindness, cerebral palsy, deaf blindness, haemophilia, hearing impairment, leprosy, intellectual disability, mental illness, muscular dystrophy, multiple sclerosis, learning disability, speech and language disability, sickle cell disease, thalassemia, chronic neurological conditions, and multiple disability. Further the draft bill 2014 states that persons with benchmark disabilities are defined as those with at least 40 per cent of any of the above specified disabilities. This is certainly progress, as it includes more categories of impairment; however, this is far short of what the UNCRPD prescribes i.e. “persons with disabilities are those who have long term physical, sensory and intellectual impairments which in interaction with various barriers in society hinders their full and equal participation in society”.
Some of the progressive countries like US and UK have much broader definitions of disability which the formulators of the law in our country fail to understand. To understand this gap, let us look at the definition of disability according to the Disability Equality Act 2010 of UK: physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on one’s ability to do normal daily activities. Further, people diagnosed with HIV infection, cancer or multiple sclerosis are defined as persons with disabilities. ‘Substantial’ is more than minor or trivial – for e.g., it takes much longer than it usually would to complete a daily task like getting dressed. ‘Long-term’ means 12 months or more – for e.g., a breathing condition that develops as a result of a lung infection
The Americans with Disability Act (ADA) of 1990 defines a physical impairment as “any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine.” Neither ADA nor the regulations that implement it list all the diseases or conditions that are covered, because it would be impossible to provide a comprehensive list, given the variety of possible impairments.
Both these legislations are broader and closer to the definition accepted by persons with disabilities around the world i.e. being that of the UNCRPD. The proposed definition in the RPD Bill 2014 falls short of this requirement.
While analyzing the definitions of disability it is important to understand it in terms of three domains. The three domains for defining disability could be classified as:
- Government – welfare domain.
- Community – representative domain.
- Persons with disabilities – progressive participatory domain.
1) Government – welfare domain: This stems out of the medical and charity approach that disabled people need care and support and, therefore, entitlements are essential for their existence. This is the current model practised in India and the challenges are aplenty; for example, more than 80% persons with disabilities in the country do not even have their medical certification due to ignorance or lack of services. For instance, in Potangi Panchayat in Koraput district of Odisha, disabled people need to travel nearly 100 kilometers to reach the district hospital to get their medical certification. They also need to spend around Rs. 200 to Rs. 500 each time, which is difficult for poor people who earn less than Rs. 20 per day. This is the scenario in most of rural India. Further, medical certification is linked to accessing government schemes like disability monthly pension, Indira Avas Yojana, aids and appliances, bus/train concessions. There are further impedimentsas they need to run from pillar to post and sometimes bribe those in charge. Thus, these schemes are difficult to access in terms of time, effort, and cost to the family with a disabled member.
2) Community – representative domain: This is the larger citizenry who consider disabled people as burdens in society. These include family, neighborhood, schools and other educational institutions, organizations and companies. The mindset is backward as their attitude towards disabled people is stereotypical and often condescending no matter what the definition of disability is or where they come from. This category of the community looks at disabled people as a representative section owing to their belief in tokenism. They think it adequate to allot 3% jobs through the reservation quota for disabled people and not consider utilizing the full potential of a person with disability.
3) Persons with disabilities – progressive participatory domain: Increasingly disabled people understand the need for participation in society in all fields of development be it education, health, employment, food security, social functions, cultural events etc. This is a small number but a growing one. There are disabled people participating in panchayat dialogues, getting educated in regular schools, accessing the national rural employment guarantee programme (MGNREGS) etc. This number needs to grow and assist in defining disability differently from the welfarist and representative modes. This group works towards fostering equality of persons with disabilities, participation, highlighting non-discrimination in society, and identifying barriers in society and so on, which are important and necessary as they look at disability through the lens of human rights!!!
Now the question of who should define disability arises. This lies within the three domains discussed above: the first domain (government) defines disability through a medical or charity approach which in India is aptly represented by the 1995 Act. This act prescribes certain provisions like special schools, reservation in employment, promotes identification of disability, 3% reservation in poverty alleviation programmes, education and government employment but fails to look into issues of violation of rights of persons with disabilities in terms of abuses, violence on women with disabilities, access to primary health care services, issues of food security, rehabilitation services, inclusive education and recognizing the potential of disabled citizens including their right to participate in gainful employment, right to food and nutrition, right to water and sanitation, right to lead a life with dignity with a decent standard of living and right to financial participation to mention a few! The current bill which also looks at psycho-social approach is not based on a human rights framework as the definition is limited and does not consider the hindrance to full participation due to barriers in society as the key issue in experiencing disability. It does mention legal capacity, non-discrimination, inclusive education, promotion of vocational training, and self-employment, however it falls short of employing a complete rights framework. A rights-driven legislation would focus on raising the standard of living of disabled citizens, enabling their participation in democratic processes including governance and decision making which are envisaged in the UNCRPD. Further, the government considers any kind of intervention in the area of disability as a cost to the exchequer, and not as a contribution to the economy.
The second domain, given a choice, will define disability more negatively as it would characterize people with disabilities as “those who need assistance”, “those who need care and support”, as “mentally insane” and so on. Such a framing of the definition reflects the negative attitudes and mindsets of the society at large and the large scale ignorance of the potential of persons with disabilities. The third domain is progressive as it has the right attitude and experience. However, the problem is that there are too few people who subscribe to this belief or point-of-view.
The definition of the UNCRPD has been debated by persons with disabilities and keeping with the philosophy of “nothing about us without us” this definition should be adopted in India. Disability is an evolving concept and there needs to be a much broader understanding of barriers in society – at the village, panchayat, block, district, town, city, and state levels. The concept has to include concerns of poor access to basic services, lack of employment opportunity, lack of participation in decision making structure and processes, lack of appropriate services at the doorstep of disabled people, access to water and sanitation, food and nutrition and basic health care services. In addition disabled people should be looked upon as contributors to the economy of the country as they have the potential to contribute as employees, as educated children with disabilities, as IT professionals, as doctors and engineers, as sports persons, as panchayat leaders, as voters, as citizens elected representatives, as individuals holding key position in government and corporate organizations. This way they will be equal contributors to development processes as well as become equal partners coming together in a meaningful effort in defining disability.
Praveen Kumar is Programme Manager, VSO India.
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