fyi.
-------- Original Message --------
Subject: Re: [OZADV] A response to Christopher Reeve's visit to Australia
Date: Sun, 26 Jan 2003 16:15:09 +1100
From: Executive Officer <[log in to unmask]>
Reply-To: [log in to unmask]
To: [log in to unmask]
Hi everyone,
a few personal comments in response to the piece from Erik, Chris and
Maurice.
1. Your thoughts are a very welcome contibution to a debate that we ought
to have more of across the country. A debate that we take forward rather
than respond to the agenda of others.
2. I entirely agree with you about the concept of "unfettered" scientific
reseach and will say so in the plenary session of the Spinal Forum on the
second day. But not not just (or even especially) because of what happend
in Nazi Germany, bad as that was, that I disagree with the use of the word
"unfettered". (My bet is someone in the reeve camp will tell us he didn't
and doesn't mean entirely withoout constraints.
It seems stunningly obvious to me that no one can or should be "unfettered"
in their actions, whatever we do as indivciduals, in our personal lives and
in our propfessional capcities. And, of course, the more power we have
access to the more it behoves any of us to me mindful of the effects upon
others and the consequences of our actions. This applies as much to
scientific research and scientific researchers as it does, lets say, to
politicians that who decide, for example, that it is morally acceptable to
fire 800 cruise missiles on to the people of Iraq during the first two days
of the war that 's about to take place.
3. Having agreed with your opposition to the use of the word "unfettered" I
must write that you've made something of a conceptual leap to assert that
embryionic stem cel research needs to be opposed. We all need a more
intellectually rigorous presentation of the case against embyronic stem cell
research than that which you propose. It's as if you are drawing moral
equivalence to damn a different piece of action. So, you sdeem to be
saying:
The Nazis did terrible things so we're against embryonic stem cell research.
Forced sterilisation exists so we're against embtyonic stem cell research
The two examples above are reason enough to be against Nazi Germany or
forced sterilization.
What is your specific argument against emybyonic or adult stem cell research
because I don't see in in your text.
We're not against ethically approved medical, scientific or social research
are we? We can't be. And are you arguing that embryonic stem cell
reesearch, per se, is outwith the purvue of ethical research? If you are,
you need to excplain that position miore thororughly than you have done in
your (otherwise) helpful contribution.
4. Your comments about achieivng social justice pursuasive (although I
might have chosen different words). For my part, I tend to look no further
than Gramsci, who (if I paraphrase) argued that no power elite ever gives up
its grasp of power or abandons its hold of hegemony without the deliberate,
conscious, organised action of those without power. That's why we educate,
agitate, organise. And if we don't campaign for social justice for people
with disability, o one else will.
5. That's part of the reason why ....
we've being working very hard over the last six weeks to convince the Spinal
Forum's organisers to take on a broader agenda. We've had some success,
which is why we are committed to making the forum a success: To illustrate
the point.
The second (of two) pleanary sessions on the first day is now entitled "a
vision for social inclusion". It's now (this is a detail) the same length
as the first plenary. We have equal time of the day one agenda.
speakers in that plenary session will include me (a general context setting
piece on the need for social inclusion) and others speaking on topoics such
as their vision for inclusion in education, employment, the builkt
environment, support to live at home.
Day to has key NSW activiusts presenting in 2 of the concurrent sessions and
PDCN is represented in the final 'hypothetical'
-----Original Message-----
From: OZADVOCACY-- Disability rights in Australia
[mailto:[log in to unmask]]On Behalf Of Frank Hall-Bentick
Sent: Sunday, 26 January 2003 10:19 AM
To: [log in to unmask]
Subject: [OZADV] A response to Christopher Reeve's visit to Australia
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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