World Brain Day falls on June 22 and this year's theme is epilepsy. I have interviewed persons with epilepsy and neurologists and have written this piece on behalf of the former.
It's difficult being me, a person who has epilepsy, in India. Not surprisingly, there is more awareness about Valentine's Day than epilepsy. Since time immemorial, philosophers excluded people with disability from framing political principles of and for society and in India, this exclusion still prevails.
Ronald Dworkin, in Sovereign Virtue: The Theory and Practice of Equality notes that a government is only legitimate if firstly, it shows equal concern for all those it claims dominion over. Secondly, it must respect the responsibility and right of every person to make something out of their life. From this perspective, I can only conclude that the Indian government is illegitimate. It is an aphoristic truth that the Persons with Disabilities Act, 1995 (PWD Act) is an instance of the government's cavalier attitude towards the differently-abled and it derides the United Nations Convention on Rights of Persons with Disabilities and the Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region. Moreover, this statute and Section 13 (3) (iii) of Hindu Marriage Act, 1955 (HMA Act) violate rule of law as the very purpose of rule of law is to guarantee non-arbitrariness, dignity, liberty.
"Even if a person with epilepsy is declared to be disabled, he/she has no rights under the PWD Act against a private person or society."
Section 2 (i) of the PWD Act restricts the definition of disability and does not specify neurological conditions as a disability, instead using inaccurate terms such as "mental illness" and "mental disorders" to classify neurological conditions. The guidelines issued to medical professionals mention that "chronic neurological condition" is a disability. Nevertheless, true to its original purpose of perpetuating inequality, it leaves the construction of the phrase to medical personnel. It is common knowledge in India that persons with epilepsy are left at the mercy of others, be it their employers, the family or mental asylums. The government has added one more name to this list: doctors. Even if a person with epilepsy is declared to be disabled, he/she has no rights under the PWD Act against a private person or society.
Section 13 (3)(iii) of the HMA Act states that divorce can be granted if the respondent has been suffering continuously or intermittently from a mental disorder of such a kind and to such an extent that the petitioner cannot reasonably be expected to live with the respondent. In contrast to the narrow definitions in the PWD Act, the HMA Act has a vast and liberal explanation to this clause.
"Mental disorder" includes mental illness, psychopathic disorder (a persistent disorder or disability of mind which results in abnormally aggressive or seriously irresponsible conduct) or any other disorder or disability of mind. The ruling given by a majoritarian judge reading these egregious benighted statutes together would be a cataclysm for someone like me. In Kadambini Sahu v. Reshamlal Sahu AIR1990 MP150, the epileptic wife carried out all her responsibilities successfully but her husband, instead of securing medical treatment for her moved the court for divorce. The trial court granted divorce but the Madhya Pradesh High Court allowed the wife's appeal. This is just one of several cases in which a spouse moved court for a divorce decree because of the partner's epilepsy.
"It is difficult for any 'normal' person to comprehend my pain. Very often, my 'normal' family and friends say that my behaviour (even if it is a side effect of medication) is 'abnormal' or 'mad'."
Had there been rule of law, my inherent rights (liberty, equality, dignity, autonomy) as a human being would have been fully secured. However, there is this fearfulness creeping inside me, this melancholia, this fear that the life that I have been building all along will be shattered into several pieces.
Generally, many of us are on drugs which have side effects like fatigue, severe anxiety, rage and angst. It is difficult for any "normal" person to comprehend my pain. Very often, my "normal" family and friends say that my behaviour (even if it is a side effect of medication) is "abnormal" or "mad". This kind of labelling and treatment, of course, aggravates such "abnormal" behaviour and on and on it goes. Then I keep crying fearfully, questioning myself if the ship that I have been building all my life is going to wreck due to my "abnormal" behaviour. My tears pose only one question to everyone: What am I guilty of to deserve this exclusion, callousness, pain and discrimination?
Maybe pain truly is incommunicable. Some philosophers remark that ordinary language legitimises pain. However, there is no language, legal or otherwise, which can legitimise or even recognise my pain. This seemed so, until I listened to Florence + The Machine's "Ship to Wreck", which seemed to perfectly articulate my feelings:
"Don't touch the sleeping pills, they mess with my head,
Dredging the Great White Sharks, swimming in the bed,
And here comes a Killer Whale, to sing me to sleep,
Thrashing the covers off, it has me by its teeth.
And oh my love remind me, what was it that I said?
And oh my love remind me, what was it that I did?
Did I drink too much?
Am I losing touch?
Did I build this ship to wreck?"
The law is an effective instrument of social change. However, it has been used by hegemonic groups to maintain their status quo. Law as a resource has to be equitably distributed, and the disabled, particularly those with neurological conditions and mental health problems have a stake in it.
Equality can only be meaningfully advanced if practices and structures are transformed proactively by authorities, mainly the government, to bring about a change. I plead to the legislators of India to draft new Persons with Disabilities Law which casts away this dark pall of injustice and inequality and gives me freedom. Only such a positive action by the government can cast correlative duties upon my fellow citizens to not deprive me of my basic rights.
I am waiting for that beautiful day when this purgatory will cease and my ship will not wreck.Suggest a correction