Vaishnavi Jayakumar
27 Jul 2010 12:37:00 AM IST
Terry Pratchett described his experience with Alzheimer’s as travelling through a country that was part of a huge computer game called Oblivion.... “At the same time as I began exploring the wonderful Kingdom of Dementia, which is next door to the Kingdom of Mania, I was also experiencing the slightly more realistic experience of being a 59-year-old who finds they have early onset Alzheimer’s.... And so now I’m a game for real. It’s a nasty disease, surrounded by shadows and small, largely unseen tragedies.”
More Indians are facing up to the unwelcome realisation that this bizarre, pathetic stranger who has consumed your loved ones, can no longer be wished away citing excuses of ordinary old age eccentricities, mild senility or forgetfulness. Nothing has brought this more into public view than the case of George Fernandes. A recent report in this newspaper said the former Union minister ‘who is suffering from Alzheimer’s disease, was brought to the courtroom in a wheelchair and appeared lost. He was not coherent, it was stated’. This was at his appearance at the Delhi High Court where his wife and brothers have been battling for the custody of the 80-year-old former trade union leader.
The hard, cold truth is that one in three over 65 die with some form of dementia. So someone in your circle of friends is probably already a caregiver — according to the 2001 census, seven per cent of the population were over 60, a figure expected to rise to nine per cent by 2016. The figures indicate that the custody battle over Fernandes is likely to affect more of us in coming years. A term we will be hearing a lot more of will therefore be legal capacity.
Over the past year, a group of disability and mental health stakeholders comprising consumers, caregivers, professionals and activists have been heatedly debating the ethical aspects of what this term means, especially in the context of the perennial caregiver lament: After me, who?
It’s not surprising that much of this debate has originated with the same group that pioneered guardianship law and security in India. The National Trust of India for the welfare of persons with autism, cerebral palsy, mental retardation and multiple disabilities was set up by the government in 1999 as an answer to that distressing question.
While parents of persons with serious mental illness and other chronic disease-caused disabilities sought redress of similar guardianship and social security worries, a viable solution was precipitated by India’s ratification of the United Nations Convention on the rights of People with Disabilities in 2007 and the subsequent flurry of law reforms it necessitated. (Currently amendments are underway for the National Trust Act and the Mental Health Act, while the People With Disabilities Act did away with patchwork amendments in favour of a new law reflecting the human rights paradigm.)
The movement has evolved quickly from issues relating to guardianship and substituted decision-making by power of attorney; to a more consumer-centric default assumption of mental competence that sees no legal contradiction in providing a person decision-making support while maintaining their full legal capacity. Simply put, it means that having a mentally debilitating condition will not rob you of your capacity to take your own legal decisions (related to property, treatment options, institutionalisation, etc). The law will ensure that you have support in making your decisions but the decision is still yours.
But the question arises, is the rest of India as well-prepared? Or is the gap between ideology and implementation going to increase further? Is the government prepared for this reform, with its leapfrogging over guardianship directly to consumer competence and mental health parity? Can informed consent ever be truly democratic, or is such choice an illusion? Is a concerned and capable third party any less effective in guardianship compared to a family member?
Is the average Indian citizen aware that a damaged and disabling state of mind post-retirement is inevitable? Along with those golden retirement plans, have you planned for the twilight before sunset? Have you got your affairs in order? Have you prepared advanced health directives for emergencies when you are at your most vulnerable? Made your exit option preferences clear? Made a living will?
Soon these options will be made available in the law and the only choice will be either to stand passively on the sidelines as a bystander (while your dignity and legacy are discussed to death quite literally!), or living life on your own terms till the very end.
“There are only four kinds of people in the world — those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
(The writer is the co-founder of The Banyan. E-mail: jayakumar.vaishnavi@gmail.com)
