The gloomy reality of the struggle of PwDs to get their basic rights is because of systemic challenges and apathy of the masses, writes DEEPIKA SHARMA
Engaging in a discourse on disability helped me know a lot about a domain which otherwise I had little knowledge of. Going to the field presented before me an opportunity to get acquainted with the state of affairs of disability in our country, which of course, was alarming.
My journey as a researcher in this field has just begun and during the previous few months, I have made a number of observations about this issue. I see different fragments of reality from the groups, the stakeholders, and the laymen. My standpoint as a researcher is strongly rooted in voicing the experiences and lived realities of persons with disabilities (PwDs). I take this as an opportunity to present some glimpses of reality in the lives of PwDs, by voicing their concerns through some interview excerpts, my own observations and reviewing what others who empathise with this issue have to say on it. My field site is the city of Kanpur, UP.
Social apathy
In a report by the World Health Organization (WHO), it was estimated that in the year 2011, 15.3 per cent of the world’s population dealt with disability of one kind or the other. According to the latest Census compiled in 2011, there are about 26.8 million PwDs in India, which is approximately 2.4 per cent of the population. The 2011 Census puts India’s disabled at 2.21 per cent of the population.
The obsession with ‘normality’, the binary construction of ‘normal’ and ‘abnormal’ and lack of an acknowledgement of diversity in human beings led to inhumane treatment of people who are differently abled. Such a viewpoint is further fueled by an age where ‘perfect flawless bodies’ dominate the popular social discourse and ‘able bodies’ dominate the economic front. This has led to dehumanisation against people who do not fit in these definitions — PwDs being one such category.
A complicated web of negative attitudes and cultural discourses and discrimination in the form of environmental barriers, inefficient policies, stagnant laws, systemic challenges results in economic marginalisation and social exclusion, thereby further disadvantaging PwDs.
lack of accessibility
Speaking about loco motor disability, accessibility is an important problem hampering this particular section from participating as social and economic members of society. This inability is aggravated by environmental and attitudinal barriers. In India, accessibility becomes an important issue as the basic disabled-friendly transportation facilities for the PwDs are limited and the architectural barriers exempt them further from engaging with society in a more meaningful way.
My interactions with many persons with physical disability have helped me know how lack of accessible buildings exempts them from basic rights, needs and services. I am tempted to mention an instance of gross negligence on the part of the system engaged in working for this particular group.
For instance, every Wednesday, there is a special arrangement for issuing disability certificates for such persons at a Government hospital (the State disability centre where certificates are made) in Kanpur. As I went there to observe and interact, I was baffled to see the circumstances. There is a small wing with two small rooms for the service providers and a small hall for people to sit as they wait for their turn. At least 200-250 people gather there every Wednesday and the room is just not sufficient to accommodate all. Even for submitting their application forms, there is a small window and PwDs have to struggle a lot to make their way through it.
Some PwDs were lucky enough to get a seat, while others stand outside, some with one leg, others with crutches, and also others who crawl their way to get inside. Some came with a family member or a friend, while those who came all by themselves were the ones who faced the most hardships. And of course, each person’s entry to the main chamber, which is where the team of doctors evaluate and declare their eligibility for a disability certificate is intervened by a “group of staff”, which as per my observation were the real deciders of who makes it first to the room. The application forms were in English and since many of the PwDs were either from nearby villages and low socio-economic background, they were unable to read, confused and thus helpless. Due to unavailability of any help, each one was trying the best to help the other. I remember filling up a lot of forms for them eventually. Interacting with them I realised, how unaware they were of their basic rights, the facilities and Government schemes that are there for them. The gloomy reality of the struggle of PwDs to get their basic right is because of systemic challenges and apathy of the masses.
Government schemes
The Government has launched a number of schemes for them, but most of them do not reach them and even if they manage to gather information about those schemes, there is a long toil of struggle, inaccessibility and callous attitude of people around which comes in their way to get these services.
As during one of my interactions with PwDs, an amputee exclaimed how travelling in trains was an arduous task because of the general apathy of the masses. He said: “The coaches for PwDs are always full with ‘normal’ people and they refuse to give us seats; it becomes a painful experience when you have stand on one leg for a long journey.”
This issue becomes complicated as service providers themselves complain of inadequate resources to perform efficiently, the PwDs struggle with challenges in every sphere of life to get their basic rights and meanwhile the laymen’s apathetic responses which further adds to it. One can always turn a blind eye to it by blaming it on the system.
However, it is important we change our thinking and bring about attitude changes by being more open to human diversity and embracing it. Another differently abled person had something really meaningful to say. He said, “The usage of one word or the other for us does not really make a difference, it is the intention and attitude which matters; we want to be accepted for who we are, is it too much to ask forIJ”
The least we can do to fight this inaccessibility and exclusion is by being sensitive to people around us whose needs are a little different from ours. It is time we paused, reflected and tried to meaningfully touch the lives of people by being the way one would want other persons to be towards them and which is something that every human being deserves, that is, respect and dignity.
I would quote a few powerful lines by a 28-year-old who lost his right leg in an accident and is now fighting against all odds with his strong will power: “No individual with disability wants out and out support and care, all they seek is a little respect for themselves and an opportunity to prove themselves. We can certainly work hard and contribute to society for we have a strong will power than any of the ‘normal’ people around, however we do need an accessible society for that to happen.”
Urban, non-urban reality
Referring to the context of my field site, it is important to realise that urban and non-urban realities are different and this holds true for PwDs and their needs. This becomes all the more crucial as the percentage of disability in rural India is more than that in urban regions. Spreading awareness about their basic rights, disability legislation and the different Government schemes is of utmost importance as most people are not even aware of these.
Together with this, it is essential to monitor the disability certificate obtaining process, as this certificate opens up an access to a better living for the PwDs. One might always question the viability of such a certificate as the percentage of disability mentioned in it becomes a deciding factor for being recognised as a PwD and get access to the basic facilities thereafter.
The reality as mentioned above portrays a state of affairs where PwDs are often at the mercy of the State and its authorities for getting disability certification and thereby get assistance in the form of free mobility aids, transport passes etc. The State disability offices (where certification and other documents are made) should be made more accessible and disabled friendly as they clearly become the epitome of the actual lived reality of PwDs.
Also, such offices should cater to people’s confusions about their basic rights and services by spreading awareness about the same. The authorities in charge should be accountable, better informed and treat it as the basic right of PwDs and not as a favour endowed on them.
The writer is pursuing PhD in Psychology from IIT Kanpur