MARK KUCZEWSKI and KRISTI KIRSCHNER
SPECIAL ISSUE: BIOETHICS & DISABILITY
The relationship between the work of bioethicists and that of disability
studies scholars and activists is only now beginning to be explored.
1,2
This
special issue of Theoretical Medicine and Bioethics is an attempt to rectify
that situation. We believe that one should not see disability as just one
more topic for bioethicists to take up, much as they would take up the
ethical issues involved with identifying a correlation between a particular
gene and certain diseases. Rather, bioethics must approach disability as
new land that is inextricably linked with traditional terrain yet, somehow,
foreign. The essays in this special issue are an important step in that
direction.
BIOETHICS AND DISABILITY: A CIVIL WAR?
Contemporary bioethics has largely evolved in response to two kinds of
problems, misconduct by biomedical researchers and forgoing of life-
sustaining treatment. As a result, bioethicists probably have a strong
predisposition to be very expansive in terms of interpreting similar ethical
questions in terms of end-of-life decisions and to readily apply the frame-
work from research ethics, that of informed consent. Although some
bioethicists will disagree with our analysis,
3,4
we believe that this histori-
cally conditioned intellectual predisposition has made it difficult for
bioethicists to fully appreciate the ethical and social policy issues posed
by disability.
For many years, disability activist groups such as Not-Dead-Yet have
blistered bioethicists with criticism.
5
More recently, activists have found a
manifesto in Wesley Smith’s book, The Culture of Death.
6
Smith argues
that a utilitarian ethos has overtaken bioethicists with the result that they
have become advocates of eliminating the infirm and disabled under the
rubric of patient rights. Bioethicists and disability activists have squared
off in various capacities over particular court cases involving withdrawal of
medical treatment.
7
However, the dominant response to these engagements
has not been increased dialogue but a general insistence that misunder-
standing is at the root of these disagreements and bioethicists need to
Theoretical Medicine 24: 455–458, 2003.
© 2003 Kluwer Academic Publishers. Printed in the Netherlands.