As per the World Health Organisation, about 15% of the world’s population lives with some form of disability. With an increase in the ageing population and those suffering from chronic diseases, the estimated number of persons with disability is on the rise. An estimated 46% of older people aged 60 years and above are people with disabilities. One in every five women is likely to experience a disability during her lifetime and one in every ten children has a disability. In India, as per the 2019 report by National Statistical Office, the overall percentage of persons with disability in the population was 2.2 per cent.
‘Accessibility’, i.e. the ability to access information, facilities, resources, products, and services is a major barrier to all individuals as resources around them are not designed keeping them in mind. Most of the world around us is designed by and for non-disabled people. It is very difficult for people with disabilities to navigate and function in this world. Right from the beginning of life, a child with a disability is discriminated against in his/her home. Due to the unavailability of inclusive education, classrooms, curriculum, lack of awareness amongst parents etc. – children with disabilities rarely have the opportunity to go to school and access education which is a fundamental right guaranteed by the Constitution of India. challenges to disability inclusive education continue to persist.
With no access to education, their chances of earning employment for them shrink further. Even if they do succeed in getting educated, employers are not confident about hiring individuals with disabilities. They are expected to constantly prove their worth in order to retain their job and provide for their families. The harassment and discrimination they face at the workplace due to their disability also make it difficult for them to find jobs. The absence of disabled-friendly infrastructure and systems, often, deprives them of their fundamental rights. To cite an example, if we look at the government recommended procedures issued for skill development, they fail to include persons with disabilities in the standard operating procedures (SOP) and neither do they have concrete provisions for identifying their job roles.
It is important to understand that disability is not at all an urban phenomenon. Of the global estimate, nearly 80% of persons with disabilities live in developing countries, according to the UN Development Programme. In villages of India, located far away from the advancement in technology and access to basic resources, one can only imagine the plight of a person with a disability. Fighting against social stereotypes that label them as a product of their parents’ past sins and being labelled unwanted, pitiful and unlucky are the lived realities of such persons with disabilities. Adding to these are the disabilities that come as a price for development. In village Jharia of Jharkand, the fumes from the coalfield fires and mining have resulted in children being born with disabilities. It’s not about making the cities like Delhi, Gurgaon, Pune, Kolkata, Bangalore and Chennai accessible but one has to think from a rural perspective.
As per a report by UNICEF released in 2019, more than 1 billion children are at risk of falling behind in school closures due to the COVID-19 pandemic. Among these 1 billion children the most vulnerable are often children with disabilities. It is important to ensure that the roadmaps prepared for the implementation of the National Education Policy (NEP) 2020 are disability-inclusive and it is the responsibility of the State to ensure that ‘No child is left behind’.
The Rights of Persons with Disabilities (RPWD) Act was enacted in December 2016. It promotes and protects the rights and dignity of people with disabilities in various aspects of life – educational, social, legal, economic, cultural and political. The RPWD Act, 2016 defines a ‘person with disability’ as “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders their full and effective participation in society equally with others”. However, the disability experience based on an individual’s interaction with their own health conditions, personal factors, and environmental factors varies greatly. People with disabilities have varying needs. They cannot be clubbed into a single group as depending on their disability – physical disability, visual impairment, intellectual disability, hearing impairment etc. – their needs will also differ.
In today’s time when the inclusion of all individuals is believed to be the key to sustainable development, people with disabilities continue to face discrimination every day. It has been nearly 5 years since the RPWD Act came into existence in 2016. The Act clearly mandated the states to make all public and private infrastructures, services and products accessible but we all know that has not been achieved yet. The poor implementation of the well-intentioned Act has made it difficult for people with disabilities to perform everyday activities with dignity. They are forced to depend on others and “adjust” on every occasion when there are inconveniences.
Media, too, plays a critical role in framing the opinions and attitudes of people regarding disability. Common portrayals of persons with disabilities are often misleading leading to discrimination and prejudice. The coverage around disability is skewed in nature and peaks as international days of celebration approach. Showing instances of violence against disabled people, mocking an individual’s disabilities etc are common sightings that perpetuate stereotypes against people with disabilities in society.
Another challenge is that disability continues to remain largely absent from data collection, monitoring mechanisms, and mainstream development narratives. Unless we have exact data on the kind of disabilities and difficulties people have in accessing services, one cannot plan for a country like India. Policymakers and practitioners tend to leave out persons with disabilities due to the unavailability of data. It is the duty of the state to ensure that all disabled persons are counted and appropriate measures to include them in the decision-making processes are followed. Proper implementation of the RPWD Act, 2016 should be monitored and taking strict actions against those who fail to comply with it should be taken.
It is also time that people with disabilities come together and fight for their rights to be exercised. They should call out every single act of discrimination against them and collectively ensure that all individuals with disability lead a dignified life. No decision concerning people with disabilities should be taken without consulting them first – “Nothing about us, without us“.