AJOY ASHIRWAD MAHAPRASHASTA, Frontline
|The larger struggle of the disability movement is about finding a voice and making it assertive.
In India, it is about pressuring the state to fulfil its social responsibility.
FOR Ghulam Nabi Nizamani, the internationally acclaimed disability rights activist from Pakistan, daily life is about unusual struggles. His fight is not just about having a barrier-free environment for all people with disabilities (PwDs); it is also an emotional one, to secure his dignity and self-esteem from the derisive language he has to face all the time and protect himself from the excessively charitable attitudes of people. Nizamani is confined to a wheelchair because of a polio attack that he suffered when he was nine months old.
“Are we disabled just because we need a ramp to move around? Don’t you need staircases to walk up a building? Isn’t that a handicap then?” he asks. The question, of course, is one about exclusion of the disabled people in dominant narratives. It is also about what is considered ‘normal’. And above all, the story of disability rights is about the larger politics of marginalisation.
Just a week before the world was gearing up to celebrate yet another World Disability Day on December 3, Agra, the heritage city in Uttar Pradesh, was the venue of the first international world congress on community-based rehabilitation (CBR) for disabled people, a world-wide project initiated by the World Health Organisation (WHO).
Nizamani was among the key speakers and participants at the event, held between November 26 and 28. He was fresh from receiving a prestigious award for his contribution to the disability rights movement at the United Nations Economic and Social Commission for Asia and the Pacific (UNESCAP) Congress at Incheon, South Korea, in early November, and his eagerness to interact with delegates from across the world at the Agra congress was understandable. However, he could not make it to the congress in time as he was refused entry into the aircraft for travelling without an escort. Many international airlines insist that disabled people have an escort. Even the information that Nizamani frequently travels alone and that he is a disability rights campaigner did not come to his rescue. “Why should I pay for an escort when I am confident of travelling alone? Shouldn’t the airline make its aircraft and staff disabled-friendly rather than unnecessarily stopping access?” he asks.
The treatment meted out to Nizamani speaks of the discriminatory practices that disabled people face every day. According to the latest estimates by the WHO, around 15 per cent of the world’s population has some form of disability. Some official estimates suggest that there are more than two crore PwDs in India, almost 75 per cent of them living in rural areas in poor conditions. The Agra conference, where more than 1,200 delegates from 72 countries participated, was the first ever organised initiative at the international level to specifically discuss the overall objective of promoting CBR as a global strategy to realise the U.N. convention on the rights of PwDs, which India had signed and ratified in 2008. Internationally, sensitivity towards PwDs has increased over the years, but it is way off the goals that were visualised in the U.N. convention. Whereas countries such as the United Kingdom and Scandinavian countries have led by example in making disability issues an integral part of planning, developing countries, including India, are far behind in this respect.
The U.N. convention was a significant departure from the way several states perceived disability. Most nations followed a charity model for ensuring security to the disabled people, implicitly excluding them from the mainstream. However, a global disability movement articulated the concerns of PwDs in terms of human rights and citizenship rights that grant them equal status. The convention was the biggest acknowledgement of the struggle where issues such as social stigma and discrimination, lack of adequate health care and rehabilitation services, and difficulty in access to transport, buildings and information were addressed. CBR was thus put on priority. The issues were articulated not as grants but as rights. Above all, the disability rights movement was about having a barrier-free environment and not merely about improving conditions of PwDs by giving them jobs or putting a ramp in a public building or instituting Braille in public notifications.
“Community-based rehabilitation helps to overcome these barriers by making optimal use of local resources not only to improve access to rehabilitation services but also to address the broader needs of people with disabilities, by ensuring participation and enhancing their quality of life,” says Etienne Krug, Director of the Department of Violence and Injury Prevention and Disability at the WHO.
VISUALLY CHALLENGED PEOPLE at a rally to demand reservation in jobs and other welfare means on December 3, World Disability Day, in New Delhi.
Disability in most countries is understood as physical difference from the majority population, more in terms of medical deformity. The meaning of disability is articulated in terminologies that derive their legitimacy from medical sciences. Thus, a disabled person could be either blind or deaf or dumb. However, the Agra conference delineated the subjective experience of a disabled person. In these experiences, the disabled condition as perceived in the world is much more than a medical condition. These experiences are narratives of exclusion from the institutions of society like marriage, education or earning a livelihood or performing human chores that the majority population is accustomed to. Western scholars have written widely about how it is the language and imagery of the citizen, imbued with hegemonic normalcy, that is primarily responsible for the exclusion of the disabled people.
A significant number of disability scholars have sought to emphasise disability as an inherently social phenomenon, something that is politically constructed. They say that disability is the oppressive socialisation of a given form of physiological “impairment”. This understanding culminates in what appears to be natural linkages in the notions of disadvantage and disability. Disability becomes a general category, which refers to the situation of those facing a barrier to normal functioning because of socio-economic and cultural constraints of hegemonic normalcy.
It is for this reason that the disability rights movement is also geared towards altering the understanding of disability. The emphasis is to situate the discourse of disability in normal categories where PwDs are understood in terms of what they can do instead of what they cannot do. It is in this background that the global disability rights movement has termed the coming 10 years as the decade of Incheon strategy, which has called for making these rights real. The 22 RI (Rehabilitation International) World Congress held in Incheon, from October 29 to November 2, advocated increased political participation in decision-making processes and planning. The disability rights movement recognises the need to work in a broader community which not only comprises PwDs but all the vulnerable communities in order to lend the movement a broader political platform. This direction is being understood as the only way forward to sensitise people in a holistic way.
The 10 goals set at the Incheon congress are reducing poverty and enhancing work and employment prospects, promoting participation in political processes, enhancing access to the physical environment, strengthening social protection, expanding early intervention and education of children with disabilities, ensuring gender and women’s empowerment, ensuring disability-inclusive disaster risk reduction and management, improving the reliability and comparability of disability data, accelerating the ratification and implementation of the U.N. convention, and advancing sub-regional, regional and inter-regional cooperation.
The larger struggle is about finding a voice and making it assertive. In India, therefore, the movement is about pressuring the state to fulfil its social responsibility. The progress of India towards addressing issues of PwDs is much lower that many other countries in the Asia-Pacific region. On paper, there are four laws that ensure security to PwDs. These are the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999; the National Mental Health Act, 1987; the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995; and the Rehabilitation Council of India Act, 1992.
Most of these laws still operate on the charity model and their implementation, as in the case of many other laws, has been dismal. However, the United Progressive Alliance (UPA) government has shown adequate interest in a rights-based law, the draft Bill of which is ready. For the first time in the past 36 years, a separate department has been created in the Indian government to deal with issues relating to PwDs—the Department of Disability under the Ministry of Social Justice and Empowerment.
However, the Rights of Persons with Disabilities Bill (RPDB), 2011, which seeks to replace the 1995 law, is likely to face many bureaucratic hurdles before it is passed in Parliament. “Disability is in both the Central and State lists. The Centre cannot unilaterally pass the Bill before getting the consent of all the States. Until now, the responses from States have been positive. But many States still have to respond,” Stuti Kacker, Secretary of Department of Disability, told Frontline.
The Indian leg of the disability movement, at this stage, is concerned primarily about three demands. First, there has to be one comprehensive rights-based law instead of four different laws and it has to be implemented effectively. Secondly, the Twelfth Five Year Plan should include disability in all the departments instead of having a separate chapter on disability as in previous Plan documents. This demand stands practically fulfilled as pressure from activists has compelled the Planning Commission to include a separate section on disability in all the chapters of the Twelfth Plan. Thirdly, there has to be adequate methods to quantify PwDs and secure them at least minimum social security measures. The Census needs to quantify disabled people in a more organised way and also identify the more vulnerable among them in terms of socio-economic indicators. This demand has been partially met, as for the first time Census 2011 has included seven different types of disabilities in its counting. In a unique experiment, the Madhya Pradesh government has led by example: it has introduced a separate column for disabled people in the service provision forms meant for the rural poor.
The draft Bill was largely welcomed by activists for several of its provisions, such as inclusion of mental disability and tax relief for companies that reserve 5 per cent of their total staff strength for PwDs. However, it also faced criticism as it does not allow for reservation in Group A and B posts. The activists think that the mandatory 3 per cent reservation for the disabled mentioned in the new Bill will fetch them only Group C and D jobs. The other concern is that there is no transition plan for PwDs to access universal and equal education despite the new Bill guaranteeing this. The activists have also accused the government of diluting the punitive measures for violations of the law in the final draft.
Javed Abidi, a prominent disability rights activist and honorary director of the National Centre for Promotion of Employment for Disabled People, emphasised the need for a strong and comprehensive law. “If there is political will, the Bill will go through. India was the seventh country to ratify the U.N. convention, ahead of countries such as China and the United States.
However, the government did not show any sincerity in meeting those demands. The attitude still remains one of pity. The government should empower the disabled. Even if it funds the non-governmental organisations working for the disabled, it should have strong monitoring systems to ensure that the law benefits PwDs. The NGOs working for the disabled enjoy immunity and non-accountability. Why is this if not for a charitable attitude?”
Despite the successes, the challenges ahead for the global disability movement are manifold. At a time when governments across the world value efficiency more than social responsibilities, material justice alone will not be enough. The larger struggle will have to be one of altering the way disability is perceived by the majoritarian polities. Perhaps, the movement will not remain just about disability but will evolve into a broader fight against the linguistic hegemony that these polities have produced.
The celebrated author Lois Keith once said, “Tomorrow I am going to rewrite the English language. I will discard all those striving ambulist metaphors of power and success. And construct new ways to describe my strength. My new different strength.” Perhaps, these lines indicate that the hope spread by the disability movement will not die.
AJOY ASHIRWAD MAHAPRASHASTA
I joined the movement because of my son, who was mentally disabled. His name was Ishwar. He died when he was 23. He would have been 37 now. When you have a child who does not respond in a ‘normal’ way, you come across many different reactions. Some people told me that this one is okay but also to have another child. As a parent, you did not know what to do. You were always forced to answer questions. More than the child, the family faced the discrimination. The doctors would have only one answer: ‘Medically, nothing is possible. He cannot be treated,’ and they close the case. The family of such a child is always forced into social isolation. Bringing Ishwar up was the greatest learning experience I have had. You had to be much more creative. I founded a school in Chennai realising the needs of such children. I am proud to say that my school is the best place in the world. One of my students, Ummul Khair, had cerebral palsy but she finished her school, and then did her graduation and now she is finishing her law degree. ”
Chairperson of the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation & Multiple Disabilities Act
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AJOY ASHIRWAD MAHAPRASHASTA
I was a protected child, actually overprotected. I am 30 years old now and almost 30,000 times people have asked me about my condition. But the thing is why do people only go by the physical appearance of a PwD [person with disability]? They always ask me whether I have consulted a doctor. Now I ask them if they have consulted a doctor because they are bald or dark-skinned. When I was in school, every teacher was partial towards me. No one ever asked me whether I did my homework. I never got any punishment because I was disabled. I wanted to be treated like a normal kid. Such overprotectiveness is also a kind of discrimination.”
Global Coordinator, DPI’s Global Network of Emerging Young Women Leader with Disabilities (EYWLD), Islamabad, Pakistan
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AJOY ASHIRWAD MAHAPRASHASTA
I am a social scientist. Yet, people stare at me because I am a dwarf. They see me as a freak. They look at me for a funny photograph. I was teased in school, was called names, and was even told that no woman would marry me.
Twenty years ago, none of the agencies such as the WHO was reaching the disabled people. CBR [community-based rehabilitation] realised that our struggle was not just about rehabilitation but about empowerment, livelihood and community development. We know we have to empower families of the disabled person to be sensitive. Only then we will be fully successful. It really takes the whole community to reach the disabled.
We have to influence policy decisions. We are not asking to grant funds to the disabled. We are talking about equal access. It takes only 1 per cent of the total budget of any public building to make it disabled friendly.
When you train teachers, also train them about disability. Make disability a part of the school and college curriculum so that people start thinking. Sensitisation needs attitudinal changes and it cannot be achieved without such interventions.”
Member, Disability and Rehabilitation team, World Health Organisation
I got the first shock of my life when my father told me that I could no longer remain in my school. That was in class VII, and I was already a school dropout. The principal of the school told my father that they could no longer take care of me as I could not walk and could not even go to the toilet. The school had no provision for ramps; the classrooms were all in the first or second floors; the toilets were completely inaccessible. Was that my fault?
I joined the open school and started helping my father in his business. By the time I was 18, I already had four years of work experience. The Government of India gave me an award in 1998 for being self-employed. It was only then that I came to know about the term ‘disability’. Until then, I had never thought I was disabled. Disability has to be looked at as a condition and not a handicap. You wouldn’t believe but I have even gone on a blind date and the girl never asked what happened to me. Every person has some or other disability. It could be emotional or physical. Some people feel that they are disabled because they are not fair or are obese. But we are always looked at differently. People who are well-behaved feel that we have a sixth sense like thing and others ridicule us. People have to accept diversity because everyone cannot be the same. Social stigma has to go. And the state has to take the initiative. If there can be a successful campaign against polio, why is it not possible with disability?”
Director, Shishu Sarothi, a civil rights organisation in Guwahati.
- India to host Community Based Rehabilitation World Congress (thehindu.com)
- #India- Jammed Wheels #disability #rights (kractivist.wordpress.com)
- ‘Disability legislation must focus on rights, not charity’ (thehindu.com)