MY TAKE 

Alive to the joys of         life 

ANITA GHAI 

Niketa Mehta's decision to approach the court for an abortion raises some 
pertinent questions though the subsequent miscarriage might have taken the 
decision
out of her hands. Don't physically impaired children deserve to live? Are their 
lives without joy? 

Doesn't a life with disability have value? 

Photo: K. Ramesh babu 
 
It's a beautiful day: Two hearing impaired women gesturing their happiness. 

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. 

The writer is a disability activist.

http://www.hindu.com/mag/2008/08/31/stories/2008083150130400.htm

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