The Contradiction in Disability Law: Selective Abortions and Rights

198 Pages·2016·1.88 MB·English

by  Smitha Nizar

Description
While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994,
prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out
foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits
the termination of such lives. The author questions the breach of rights of persons with
disabilities by studying the contradiction that exists between disability-selective abortion and
disability rights.

Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book
questions the unproblematic perception towards disability-selective abortions, but without
entering the realm of a woman's right to take decisions about her body.

While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994,
prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out
foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits
the termination of such lives. The author questions the breach of rights of persons with
disabilities by studying the contradiction that exists between disability-selective abortion and
disability rights.

Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book
questions the unproblematic perception towards disability-selective abortions, but without
entering the realm of a woman's right to take decisions about her body.

While the Indian legislation on prenatal tests, the Pre-natal Diagnostic Techniques Act, 1994,
prohibits the use of prenatal tests for sex-selection, it permits the use of these tests to pick out
foetuses with disabilities. Further, the Medical Termination of Pregnancy Act, 1971 permits
the termination of such lives. The author questions the breach of rights of persons with
disabilities by studying the contradiction that exists between disability-selective abortion and
disability rights.

Analysing the legitimacy of an automatic decision to abort a foetus with disability, this book
questions the unproblematic perception towards disability-selective abortions, but without
entering the realm of a woman's right to take decisions about her body.
Title Pages
Source:
The Contradiction in Disability Law
Publisher:
Oxford University Press
(p.i) The Contradiction in Disability Law (p.ii)
(p.iii) The Contradiction in Disability Law

(p.iv)

 Oxford University Press is a department of the University of Oxford.
 It furthers the University’s objective of excellence in research, scholarship,
 and education by publishing worldwide. Oxford is a registered trademark of
 Oxford University Press in the UK and in certain other countries.
 Published in India by
 Oxford University Press
 YMCA Library Building, 1 Jai Singh Road, New Delhi 110 001, India
 © Smitha Nizar 2016
 The moral rights of the author have been asserted.
 First Edition published in 2016
 All rights reserved. No part of this publication may be reproduced, stored in
 a retrieval system, or transmitted, in any form or by any means, without the
 prior permission in writing of Oxford University Press, or as expressly permitted
 by law, by licence, or under terms agreed with the appropriate reprographics
 rights organization. Enquiries concerning reproduction outside the scope of the
 above should be sent to the Rights Department, Oxford University Press, at the
 address above.
 You must not circulate this work in any other form
 and you must impose this same condition on any acquirer.
 ISBN-13: 978-0-19-946665-8
 ISBN-10: 0-19-946665-3
 Typeset in Minion Pro 10.5/13
 by Tranistics Data Technologies, Kolkata 700 091
 Printed in India at Rakmo Press, New Delhi 110 020
Table of Contents
Preface

Acknowledgements

List of Abbreviations and Acronyms

List of Statutes

Table of Treaties

Table of Cases

Introduction

1. The Interplay between Natural and Social Selection

2. Competing Discourses on Value and Quality of Human Life

3. Varied Perspectives on Sex- and Disability-selective Abortions

4. Perfection at the Cost of Excellence: Implications of Disability-selective Abortions

5. The Equality-Non-discrimination Gaze on the Right to Life

6. Disability-selective Abortions in National and International Law

7. Deliberated Decisions, Not Automated Response: The New Discourse on Disability-
selective Abortions

Bibliography

Index
(p.vii) Preface
Source:
The Contradiction in Disability Law
Author(s):
Smitha Nizar
Publisher:
Oxford University Press
When I conceived my first baby, I was, like any other woman, all excited and enjoyed the emotional
feelings absolutely exclusive to a woman. Even though I was eager to know the sex of my first baby,
just to purchase gifts, it was legally prohibited in India. However, I felt proud of the powerful law that
has banned scientific tests, to disable sex-selective abortions. But the very same law generously
allowed tests that could tell if my baby would fall under the normal category, to make me eligible to
give birth. Every test verified that the baby was perfectly alright and would not cause any harm or risk
to my life. It was a pleasure to know that my baby was normal. I was grateful to science and the law
for letting me know about my babies in advance.
I was happy to have two girls and I challenged the Indian law that prohibits prenatal tests to know the
sex of the baby. Had the Pre-natal Diagnostic Techniques (Regulation and Prevention of Misuse) Act
(PNDT), 1994 permitted me to know the sex of my children in advance, I would have been happier to
welcome them with many cute gifts. However, as a law student, I saluted the PNDT Act, a powerful
and passionate law, that supports the birth of girl children by regulating and restraining science and it
inspired me to pursue a research. The absolute legal ban on sex-selective abortions made the society
acknowledge the wrongfulness of such practices that deny (p.viii) the right of existence, in effect
denying right to equality and non-discrimination to one kind of humans, that is, the females. Thus, I
started discussing the PNDT Act on all legal podiums, and won a gold medal for my post-graduation in
law.
However, the decision of an American woman of Indian origin to give birth to her first baby who had
congenital disabilities prompted me to examine the murky side of my favourite PNDT law. I was not
even aware of the exact conditions of congenital disabilities, but as a first-time mother I thought that
women were not supposed to give birth to such babies. The law that prohibits prenatal diagnoses to
know the sex permits it to know the disability. And it treats providing information about disabilities as
unproblematic, even though that information facilitates selective abortion. The woman was
determined to give birth to her first baby, ignoring the strong advice given by doctors to abort the
foetus. In contrast to the medical assessment of abnormality, the child thus born is now a popular
public speaker, of course still with all those abnormalities.
This prompted me to review the PNDT Act, which prohibits the use of technology for sex selection but
permits selecting out foetuses for many other conditions referred as abnormal. I curiously studied
each of those conditions as stipulated under the act. The first condition was Down syndrome. I quickly
connected it to Ikru, one of my childhood friends. He used to run out of his house, exactly at the time
of my school bus, to give me a lovely smile. He would accept all the gifts from me, but he was a genius
not to accept it from my other friends who used to befriend him to compete with me!
This realization of individuality of persons with disabilities has inspired me to question the law in
prohibiting sex identification but permitting identification of any other condition. The legal order on
disability-selective abortion provided under the domestic laws—the PNDT Act, 1994 and the Medical
Termination of Pregnancy Act, 1971—thus present a paradox. It provides a sophisticated medico-legal
strategy to abort foetuses with disabilities. Thus, five years of my life have been passionately spent on
writing this book to demonstrate and address how the unproblematic disability-selective abortions are
actually problematic. (p.ix)
In the beginning, this legal research was to find out the fault in the law to challenge it. But, as if
destined, during my research, I met with an accident resulting in severe head injury and short-term
loss of memory (amnesia). Also, my friendship with persons with disabilities, especially my best friend
Anna Clements, Michigan, USA, kept me on track with individuality and rights of persons with
disabilities. How could I justify this book without experiencing disability in some form was the most
inspired and whole-hearted consolation that I had during my short-term memory loss.
The extant literature on disability rights and selective abortion does not intertwine the rights and
persons with disabilities while this book entwines both. This work also identifies the power of legal
discourse to construct and to normalize or legitimize world views, which is of crucial importance for
persons with disabilities. That is why this book analyses two main themes: the medical view of
disability and the role of law that is gaining social acceptance for this prejudiced view of disability.
The law plays an unjust and unethical role when it simply prohibits and allows abortions based on the
grounds of sex and disability respectively. This book analyses the legal developments on domestic and
international levels. It examines whether the availability of disability-selective abortion negates the
rights of persons with disabilities. Can the scientific and technological advances in the area of prenatal
testing be carried forward without breaching disability rights? (p.x)

(p.xi) Acknowledgements
Source:
The Contradiction in Disability Law
Author(s):
Smitha Nizar
Publisher:
Oxford University Press
‘All praise is due to God Almighty alone, the Sustainer of all the worlds.’ It was my first expression of
acknowledgement when I completed this work. This book has been a work in progress for the last few
years.
Human life is so uncertain in this fast-moving new era. At the beginning of this work, this was just one
of my philosophical tasks. However, I was destined to experience it myself, when I met with an
accident. A severe head injury and the consequent memory loss made me realize the reality of this life.
Anyone may lose the proud feeling of completeness at any point of their life. This realization is the
spirit of this work.
Let me remember all the personalities I met during this journey. I remember, with gratitude, the
intellectual and emotional debts I have incurred in the completion of this work. In this connection, I
would like to pay my tributes to Adrienne Asch, who offered me inspiration through her philosophical
arguments and writings. Though we never met in person, I felt her absence when I got to know about
her demise. Her writings are the most inspiring and encouraging part of my research.
I have incurred uncountable and invaluable intellectual support from many. I would like to express
my gratitude to my mentor and supervisor, Amita Dhanda, for the intellectual and emotional debts.
She (p.xii) made me believe that all of us are end in ourselves, not the means of others. Her
continuous counter-arguments and criticisms sharpened and shaped this work.
I thank Anna Clements, the nicest person I have met in this life. Her continuous criticism and
suggestions from her own experiences of disability helped me gain a new insight on disability
perspective. I also thank Pat Ingoldsby for surprising me with the gift of a signed copy of his own
wonderful book of poetry, ‘How was it for you Doctor?’ I cannot forget the support and inspiration I
have gathered from Nilesh Singit, a true disability rights activist.
I thank Arlene Kanter for her appreciation and acknowledgement of the difficulty to pursue this work.
She continued her support when she invited me to Syracuse University to share my ideas. I also thank
Tom Shakespeare, for sending me his personal copies of research articles and research papers. I am
indebted to Renu Addlakha for her intellectual support and sharing her individual research papers
and many other research works relevant to my work.
I thank everyone in the working group of drafting Disability Rights Bill. It was a privilege to know how
difficult, but meaningful, it is to draft a law and ensure the participation of its stakeholders. But, the
present Disability Bill, diluted by the executive, demonstrates how hard it is for persons with
disabilities to avail their rights without negotiating.
I also acknowledge my students, friends, and well-wishers who shared my passion for this work, and
also registered their criticism that forced me to move on.
I owe a particular debt of gratitude to the multitude of scholars who have travelled before me in
investigating the various contexts related to my research. I have acknowledged them in the footnotes
and bibliography in this volume.
I thank Indian Journal of Medical Ethics and Christ University Law Journal for granting permission
to print the revised versions of my articles in this volume.
I would also like to acknowledge the value of presence and emotional support of some persons in my
life. To them, ‘thank you’ as the formal words will just be meaningless.
K.P. Mansur is the one who never let me give up on this philosophical task. Many times, his
demanding support made me to emulate high values. This work would not have been possible without
his complete emotional support. (p.xiii)
Thanks to my brother Jaffar for beng with me (as if he had a choice!). Finalization of this work would
not have been possible without his technical efforts and emotional support. His comfort level with
computers made sure no draft of this work was ever lost. He was the sole bearer of my eternal
research troubles.
My thanks to Khalid C.H. for his complete support. I also acknowledge all my teachers who will always
be my inspiration to see life as a learning process.
I appreciate all the great personalities who accept persons with disabilities as complete human beings
and fight to protect their rights.
I remember with gratitude all persons with disabilities. My friends, I conclude my lines of gratitude by
taking a line of Pat Ingoldsby from his poem ‘Lovely Lost and Lonely’: ‘The world is a poorer place
while you remain outside it!’ (p.xiv)

(p.xv) Abbreviations and Acronyms
Source:
The Contradiction in Disability Law
Publisher:
Oxford University Press
 AIR
All India Reporter
 ALR
Australian Law Reports
 CEDAW
Convention on the Elimination of All Forms of Discrimination against Women
 CEHAT
Centre for Enquiry into Health and Allied Themes
 CRC
Convention on the Rights of the Child
 DSPD
Declaration on Social Progress and Development
 EFM
Electronic Foetal Monitoring
 ICCPR
International Covenant on Civil and Political Rights
 ICESCR
International Covenant on Economic, Social and Cultural Rights
 IDC
International Disability Caucus
 ILO
International Labour Organization
 IOR
India Office Records
 MASUM
Mahila Sarvangeen Utkarsh Mandal
 MTP
Medical Termination of Pregnancy
 NAI
National Archives of India
 NSWSC
New South Wales Supreme Court Reporter
 NWP
North Western Provinces
 PIL
Public Interest Litigation
 PNDT
Pre-natal Diagnosis Techniques (Regulation and Prevention of Misuse) (p.xvi)
 QB
Queen’s Bench
 SC
Supreme Court
 SCALE
Supreme Court Almanac
 UDHR
Universal Declaration of Human Rights
 UN
United Nations
 UNCRPD
United Nations Convention on the Rights of Persons with Disabilities
 WFD
World Federation of the Deaf
 WHO
World Health Organization
 WNUSP
World Network of Users and Survivors of Psychiatry

(p.xvii) List of Statutes
Source:
The Contradiction in Disability Law
Publisher:
Oxford University Press
 Indian Penal Code, 1860
 Act for the Prevention of the Murder of Female Infants (Female Infanticide Act), 1870
 Act for the Suppression of Trade in, and Circulation of, Obscene Literature and Articles of
Immoral Use, 1873
 Constitution of India, 1950
 Medical Termination of Pregnancy Act, 1971
 National Genetic Diseases Act, 1976
 Pre-Natal Diagnostic Techniques (Regulation and Prevention of Misuse) Act, 1994
 Sexual and Reproductive Health Act of Spain, 2010
(p.xviii)

(p.xix) Table of Treaties
Source:
The Contradiction in Disability Law
Publisher:
Oxford University Press
 Convention on the Elimination of All Forms of Discrimination against Women, 1979