MENTAL illness is often perceived by the society in two diametrically opposite ways. First is being sceptical about a person’s ability to work and perform his duties well after a period of mental illness. “They might consider this illness adversely when I am due for my promotion next year,” said Anbu (not real name), a government employee as he recovered from an acute episode of Schizophrenia. Many others with similar concerns conceal their mental illness from their employees and choose to forgo their medical benefits.
On the other end, people, including policy makers, are sceptical about disability in persons with chromic mental illness. “They are just lazy. There is nothing wrong with them,” is a common belief.
Significant advances in the treatment of psychiatric illnesses have helped many persons recover completely. But, we still have a small percentage of people with specific illnesses who do not improve with the available treatment options. They remain disabled. If you consider the incidence of mental illness and the population of India, this small percentage translates into a large number.
Dr. Thara, Director of SCARF (Schizophrenia Research Foundation) and Chairperson of the Rehabilitation committee of the Indian Psychiatric Society, says, “The disability associated with chronic mental illness is invisible. The impact on family members is considerable.”
Take for example, Schizophrenia. It is characterised by delusions , hallucinations and other thought disorders. These positive symptoms usually respond well to treatment. Many also have what are called as negative symptoms, namely apathy, blunted emotional responses and paucity of speech. These lead to social withdrawal and lowering of social performance and cause disability in chronic schizophrenia. Factors responsible for chronic illness are delay in starting treatment, irregular treatment, early onset of the illness, poor occupational adjustment prior to illness, and certain subtypes of schizophrenia called simple schizophrenia and magical or religious treatment being sought first.
During the initial phase of Schizophrenia, there are chemical changes in the brain, which can be reversed by medication. As the illness progresses, subtle structural, irreversible changes develop in the brain. This coincides with the appearance of negative symptoms and disability. Once disability sets in, it does not easily respond to medicines. These persons need rehabilitation in the form of occupational therapy.
Even an apparently minor illness like Obsessive Compulsive Disorder (OCD) can be severely disabling for some persons who do not respond to medicines. Bala has to wash his bathroom, bucket and the mug ritualistically a few times before starting his bath. His bath takes another four to five hours, so he can’t go to work in time. Each action or decision is an arduous task, as he struggles against repetitive and intrusive obsessive thoughts. He resigned his jobs, as he could not do any work while at office. The long hours taken to do a task may be amusing for an observer but is extremely painful and disabling for the sufferer.
Disability due to depression is again an invisible disability. The person loses interest in all activities and even simple tasks needs considerable effort. Chronic depression is relatively rare compared to chronic Schizophrenia.
Official recognition of disability due to chronic mental illness is slowly growing. After considerable lobbying by NGOs, psychiatrists and families of mentally ill, disability due to mental illness was included in the “Persons with Disability Act” passed by the Parliament in 1995. The objections raised by policy makers before 1995 were that, one, mental illness was transient. But some conditions are not transient. The second objection was about measuring and quantifying psychiatric disability, as disability benefits are given for those with a disability of 40 per cent or above.
This was a genuine lacuna that was rectified later. Dr. Thara, on behalf of the Indian Psychiatric Society, evolved an assessment tool called Indian Disability Evaluation and Assessment Scale (IDEAS). This has been field tested in eight centres in India and found to be valid. The Ministry of Social Justice and Empowerment, Government of India gazetted it in 2002.
But in practice, disability benefits are still elusive for persons with chronic mental illness. Official neglect is evident in the omission of a representative for the mentally ill in the recently constituted Disabilities Commission. The only benefit so far has been the transfer of family pension for the disabled. There is still no system in place to provide travel concession, which would make it easier to reach their rehabilitation centre or hospital. All they need is empathy and support to rebuild their lives in dignity. It is high time the government started trying to implement what was envisaged in the Persons with Disability Act, 1995.
This article was first published in The Hindu on 30 Nov 2003