fyi.
A response to Christopher Reeve's visit to Australia
22nd January, 2003
By Erik Leipoldt, Dr. Christopher Newell and Maurice Corcoran
Like Christopher Reeve, the three of us lived through the trauma of acquired
disability and have a long involvement in pursuit of many disability issues. As
people with acquired mobility impairment, two of us with quadriplegia, we know
only too well the stark contrasts between life with and without disability.
Obviously no-one chooses to acquire a disability. But what lengths should we as
individuals and as a society go through on a quest for the Holy Grail of
normality?
We do not support embryonic stem cell research to ‘cure’ conditions like
quadriplegia. Contrary to media stereotypes Christopher Reeve does not represent
a universal disability stance on this issue. To the contrary, in his own
country, America, as well as in Australia disability groups are critical of his
views.
Social isolation, physical, social and attitudinal barriers create much of the
suffering that can arise from having disability, including quadriplegia. It
also comes from the devaluation of any human condition, which is not reflective
of the societal worship of youth, agility and physical beauty. Inadequate
support services, de-humanising institutions, high levels of unemployment and
exclusion from regular education are some of the results of this devaluation.
Besides, wars, environmental degradation, hunger, depravation and,
paradoxically, many aspects of our consumerist lifestyles cause much disability.
Nevertheless, amidst their difficult circumstances and given the right support,
many people with significant disabilities have come to experience their lives as
good as anyone’s. Such phenomena of good life-satisfaction are also widely
reported in research literature, including for respirator-dependent people with
high levels of paralysis.
But Reeve wants to “err on the side of unfettered scientific inquiry” in solving
impairment itself. That’s how he wants to “keep hope alive”. He is both
misguided and misleading. His wealth and status provides a cushioning from many
of the disabling effects of social marginalisation and inequality that most
people with disability experience. The cure for this injustice cannot be fixed
by medical science.
It concerns us greatly that the embryonic stem cell research lobby appears to be
using the public’s innate fears of disability, and people with disabilities, for
its own ends. It presents disability as a highly emotional tragedy, an anomaly,
which requires no less than a medical cure. People with disabilities have been
there and found that worldview wanting. It has led to their lives being
described as ‘unworthy of life’, culminating in their mass sterilisation in many
countries and the killing of at least 200,000 of them in Nazi-Germany. Today
unlawful sterilisation of girls with developmental disability and genetic
screening of unborn babies with disabilities with a view to their abortion
happens in Australia. A predominant medical view of their condition makes
people with disabilities vulnerable to a ‘cure-or-death’ ethic. Why not accept
us as we are? Let’s err on the side of the many ethically positive steps that
are perfectly well possible within current capacities of rich societies such as
America and ours. That would not only keep ‘hope’ alive: it would contribute to
a more caring, interdependent society where all people can flourish in an
atmosphere of greater mutual acceptance. Having said this, we would not reject
ethically uncontroversial cures. We must, as a society and as individuals,
truly invest in an unfettered removal of social causes of disability, and also
accept fragility as part of the human condition. Until we do this, it seems
obscene to spend $46 Billion on an outlandish, ethically contested cure for what
really represents a lucky few among the world’s people who experience
disability. But, we sense that this is not what it’s all about. As in so many
types of bio-research, a bunny is involved.
The minimisation of many causes of socially-created suffering are in the power
of politicians such as Premier Carr. Whatever advances people with disabilities
have gained today is not however primarily due to vigorous efforts by people
like him. They have come about by long and costly years of lobbying hard-nosed
politicians by people with disabilities and their allies. Alas, we can remember
few politicians who we have ever seen “infected” with a “quest” to truly assist
people with disabilities to be welcomed in our communities. True political
support to such ends would help. Despite Reeve’s assertion that he “learned to
appreciate the sensitive nature of the stem cell issue and the need for thorough
debate”, the Carr/Reeve spinal forum features these two key speakers only. We
are not aware of offers of free accommodation and travel (let alone speakers’
fees) to those Australians with disabilities who might present alternative
views. But we are aware of the key speakers’ convergent interests: Bob Carr’s
quest for his State’s piece of a potentially lucrative $70 Billion embryonic
stem cell industry and Reeve’s obsession to walk. Oh, yes, and there’s a State
election coming up.
Erik Leipoldt is a PhD candidate in Human services at Edith Cowan University in
Perth, WA.
3 Warruga Way
Wanneroo WA 6065
Tel. 08 93069164, 94052995
Email: mailto:[log in to unmask]
Dr. Christopher Newell is a Senior Lecturer in Medical Ethics at the University
of Tasmania.
GPO Box 252-33, Hobart, Tasmania,7001, Australia.
Ph: +61 3 62264740 Fax: +61 3 62236174
Home Ph: 03 62248584
Mobile Ph: 0418545611
Email: mailto:[log in to unmask]
Maurice Corcoran is the President of the Physical Disability Council of
Australia
26 Alsop St Semaphore 5019
tel/fax (08) 8242 1391
Mobile 0438463616
email: mailto:[log in to unmask]
Other links:
http://www.onlineopinion.com.au/2002/dec02/leipoldt.htm
http://www.abc.net.au/rn/talks/perspective/stories/s668705.htm
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