Lifestyle - Alive to the joys of life

I am writing this from the vantage point of one who has been mobility-impaired since the age of two. Rheumatic heart problem at 13, two heart surgeries because of a mitral valve replacement, breast cancer and a stroke. The idea is not to invoke a mod el who can fight the illnesses. As a disability activist, and more importantly, as a woman, I do believe that a woman’s decision to abort a foetus, whatever her reasons, is not to be problematised. I believe it is a decision about her body and how she chooses to live her life.
Given my location, my empathy was with Niketa Mehta and her husband Harshad Mehta. They were anguished because of an unborn child with a cardiac medical condition. My admiration for them is immense . They, unlike many, have chosen to follow the right path. They pleaded their case on the basis that the child was suffering from a congenital heart block that would require a permanent pace-maker, meaning that the child would have a disabled life and would also hurt them financially which they would not be able to afford in the long run. Construction of disability
Notwithstanding the pain that Niketa and Harshad have experienced, my question is that is that the only way? While I understand and accept the desire for a “normal” child, my problem is the construction of disability. Despite the fact that public opinion, specifically mothers’, is on Niketa’s side, the assumption that there is no space in this world where the disabled can have a life is not something worthwhile. I do understand the pressures on family, specially the mothers, of taking care of a disabled child. Finances, relationship issues, stigma and more importantly a task till you live. The appeal to the high court seems to have all the right reasons. However the court in its lawful interpretation did not allow Niketa to abort. A division bench of Justices J.N. Patel and K.A. Tated, constituted a committee headed by the Dean of J.J. Hospital, as an earlier report submitted by the hospital on the condition of Niketa’s unborn foetus was unable to satisfy the Bombay High Court. According to the court, “there is no medical evidence on record to say that he will be handicapped after birth. The petitioners have not made out that this lady’s case is exceptional for us to use discretionary powers”.
The rationalisation was that at 25 weeks, the risk for the mother was accentuated. Further, the experts are not sure whether cardiac surgery will be required at or after birth. According to the court even if the couple had approached before 20 weeks, it would not have been possible to allow abortion, as the experts did not have a uniform opinion. Stigmatising term
Mehta also sought an amendment to the Medical Termination of Pregnancy (MTP) Act so that pregnancy can be terminated even after 20 weeks if doctors believe that the child, if born, will have serious abnormalities so as to render it handicapped. This term “handicapped” is a term that is stigmatising. For many of us who have lived lives with disabilities or “handicap”, life is not unliveable or without quality. It seems that the only option is in abortion, as society looks at people with a disability as tragic, worthless and desperately burdensome. My basic contention is that the notion that there is something wrong with people with impairments, is problematic. Doesn’t a life with disability have value? Should only the so-called normal human beings be the rightful owners of the world? Polio happened to me at two years. Was I a criminal? Don’t the 50 to 60 million disabled have the right to live a meaningful life? In the last 20 years or so, it has been proved that it is social oppression and not the impairment itself that impinges on many of us. No positive inputs
The serious problem according to me was not Niketa who was tense, upset and worried about a disabled child. Rather it seems that the medical fraternity has not given the correct information about people who have disabilities. Since there is no way of relating to the world which has disabled people who laugh and cry and have a productive life. Had Stephen Hawking or Helen Keller or Mozart or Surdas or Ved Mehta been aborted, the world would have been a poorer place.
While there are no compelling reasons to abort less than perfect children, I myself feel that limiting the rights of anyone, including those of a woman to end a pregnancy is very discomforting. A more rational response to children’s suffering is that we should focus on improving the quality of life instead of destroying the child’s life. Many of us would feel ambivalent about the court judgement; the fact is that legal strictures are definite in interpreting a legislation that certain weeks for abortion are mandatory. She might have lost the fantasy of having a “bonny” baby, she would perhaps have felt better had she experienced the joy of many of us who are disabled physically or mentally but not broken in spirit.