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The statement from the former Chief Justice of India Justice D.Y. Chandrachud highlighting the hardships faced by him post-retirement, in finding an accommodation in Delhi to meet the needs of his two specially abled adopted daughters suffering from Nemaline Myopathy (NM) prompted me to write this article.
A few days ago, we senior citizens living in our gated community gathered for an informal get together of meet and greet. Most of us were suffering from age related health issues like back ache, knee pain, arthritis, failing memory, failing eye-sight, hearing loss etc. Amongst us was a super senior resident, an octogenarian, hale and hearty and fit like a fiddle. His levels of fitness amazed every one.
Asked about the secret of his super fitness at this age he smiled wryly and said “I can’t afford to fall sick. I have a wheel-chair bound son to take care of”.
This profound yet poignant statement brings out the pain, agony, family isolation and the daily struggle of fighting the depressive thoughts of millions of caregivers, who dedicate their lives in taking care of family members suffering from chronic mental and physical diseases like spasticity, autism, paralysis, arthritis, cancer, heart related issues etc.
I salute them and bow my head in reverence to these silent soldiers for their resilience, physical and mental strength and never-say-die spirit in facing the daily challenges of life with grit and determination with no resolution in sight. Apart from taking care of the emotional needs of the dependent family members these tireless warriors have to sometimes take care of the physical needs like feeding, bathing, clothing etc. of the dependents. Their sacrifices for the family are supreme, immeasurable and beyond words of description.
They are scared that the dependent family members would be left orphans in case they fall sick even for a day. This fear keeps haunting them regularly. So they strive to keep themselves fit through regular exercises. They even secretly wish the dependent family members pass away before their own eyes lest they should get exposed and suffer in this merciless world with no one to take care of them.
The bitter truth is that once the caretaker falls sick or dies the patient is left to the mercy of fate with even the closest relatives distancing themselves from them. Unfortunately, there is no safety net for such disease-stricken people in our society.
Indian Laws are governed by the Medical Termination of Pregnancy Act 1971 for birth defects. Sadly, the law doesn’t take into account the minor abnormalities but considers only the grave birth defects which would risk the life of the mother and child for permitting the MTP. Autism, ALS etc. are not considered grave birth defects under the law. Hence, don’t qualify for MTP.
The right to terminate pregnancy should be the sole and exclusive right of the parents to take a decision whether or not to carry on with pregnancy wherever birth defects are observed. It shouldn’t be left to the recommendations of a couple of doctors and to the decision of a few judges who would sit on judgement to decide whether the abnormalities reported qualify for MTP or not. After all, it is the parents who would face the harsh realities of life of bringing up the child with abnormalities in this unforgiving world. It is time the obsolete MTP law of 1971 is suitably amended to be more empathetic towards the patients and their caregivers.
The belief that a foetus is a person with a right to live from conception regardless of circumstances is a fallacy and needs to be urgently replaced by the foetus’s right to live with dignity.
These pieces are being published as they have been received – they have not been edited/fact-checked by ThePrint.