March 26 is Purple Day, the international day for epilepsy awareness. The word 'epilepsy' means "to seize, possess, or afflict". This indicates how language is a tool in the hands of the powerful, the so-called "normal" human beings. This inequality between "normal" and 'abnormal' emanates from the hegemonic structure of our society and is evident in the language of the law.
The Persons with Disabilities Act, 1995 does not explicitly recognise epilepsy as a disability nor does it impose duties upon the private sector. Also, it is not modelled on the lines of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which recognises that"disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others." These attitudinal and environmental barriers are manifested in the stigma and discrimination that people with epilepsy face. It is significant to note that the border between 'normal' and 'abnormal' is arbitrary and shifting.
"I yearn for the day when the 10 million people with epilepsy in India can tell everyone that they have the condition and yet possess rights which impose correlative duties on State and non-State actors."
Articles 14 and 16 of the Constitution impose duties upon the State, not upon the non-State actors. Moreover, Rules framed under the Factories Act, 1948 allow the employer to terminate the services of the employee if he/she is "medically unfit". The term is vague, thus open to many constructions, mainly majoritarian. This shows how the State undermines the Constitution with impunity. Not long ago, people with epilepsy were equated with the medically insane in the Hindu Marriage Act, 1955 and the Special Marriage Act, 1954.
I yearn for the day when the 10 million people with epilepsy in India can tell everyone that they have the condition and yet possess rights which impose correlative duties on State and non-State actors.
The Macpherson Report defined 'institutional racism' as "the collective failure of an organization to provide an appropriate and professional service to people because of their colour, culture, or ethnic origin. It can be seen or detected in processes, attitudes and behaviour which amount to discrimination through unwitting prejudice, ignorance, thoughtlessness and stereotyping which disadvantage minority ethnic people."
This term can be adapted to define institutional bias against people with epilepsy by simply adding the word "disability", to be construed on the lines of UNCRPD. This way epilepsy is included under the definition of "disability". Such 'institutional bias' influences the decisions of the legislators, executive and judiciary, which further attributes meaning to everything.
Articles 1 and 2 of the Universal Declaration of Human Rights, 1945 enshrine equality and dignity and Article 3 states that everyone has the right to life, liberty and security of person. Article 21 proclaims the right to life and liberty which encompasses the right to dignity and health. However, a mere proclamation of a right is not adequate; it has to be socially guaranteed since that will result in correlative duties. There are several arrangements that the government is obliged to make in order to secure the basic rights - these provide minimal protection to the disadvantaged and help them protect themselves. These arrangements should serve as guarantees to protect the weak from threatened deprivation of these rights.
"Does a malady criminalise one or, worse, does it render one sub-human? Since he/she is sub-human, a necessary corollary follows that he/she does not possess any human rights, which is the current situation."
On behalf of the millions of faceless, nameless people with epilepsy, many of whom do not even get access to treatment, I question society, the non-State actors and the legislators, executive and judiciary as to the legitimacy of this bias. Does a malady criminalise one or, worse, does it render one sub-human? Since he/she is sub-human, a necessary corollary follows that he/she does not possess any human rights, which is the current situation.
Why does one have to be furtive about epilepsy? What are the arrangements that the government has taken to secure the rights of the subaltern, especially under Article 47 (improve public health) of the Constitution? Instead of dismantling the deeply entrenched institutional bias, has the clear meaning of Directive Principles of State Policy been dismantled? Have Indian citizens forgotten their Fundamental Duty under Article 51A(h) to develop their scientific temper and humanism? Why, since 2000 BC, has the meaning of epilepsy and the plight of people with epilepsy remained constant? Most abuse and discrimination that happens against people with epilepsy has not been defined or treated as a wrong, since historically those affected have been excluded from the authoritative, legislative processes. When will they be identified as stakeholders and be consulted in law/policy making? How long will this victimisation continue? For how long will the State superimpose its hegemonic meaning upon the voices and pain of people with epilepsy? Don't all religions teach us empathy rather than callousness?
"It is this "normal society" and the State which are possessed by a spirit of egregious discrimination, not us, the subaltern."
The State cannot be neutral and divorced from the hegemonic societal structure -- otherwise the status quo would never change. The State has a duty to act positively to rectify the impact of such discrimination. The solution lies in positive duties which are proactive rather than reactive. Positive duties rely on the sound footing that societal discrimination extends far beyond individualised prejudice. Equality can only be meaningfully advanced if practices and structures are transformed proactively by authorities who can bring about a change.
The Bhagavad Gita teaches us, "Every hero is obliged to wage the Mahabharata war in and through his own life. Nothing here on Earth is achieved without a fight." Independence from the British Raj was also achieved by Satyagraha, led by Mahatma Gandhi, who said, "First they ignore you, then they laugh at you, then they fight you, then you win."
As I hum "Jodi tor daak sune keu naa ashe tobe ekla cholo re (If no one responds to your call, then walk alone)" while waging my war for our emancipation and rights, I realise that it is this "normal society" and the State which are possessed by a spirit of egregious discrimination, not us, the subaltern.Suggest a correction