Like Christopher Reeve, the three of us have 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. Actually,
disability groups are critical
of his views in his own country, America,
as well as in Australia.
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. Beside which, wars, environmental
degradation, hunger, deprivation and, paradoxically, many aspects of our
consumerist lifestyles cause much disability. Nevertheless, amid their
difficult circumstances and given the right support, many people with
significant disabilities have come to experience their lives as profoundly
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 provide 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
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 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
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
within the power of politicians such as Premier Carr. Whatever advances
people with disabilities have gained today are 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 been "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.
Dr Erik Leipoldt is a Dutch-born Australian. He acquired his disability of quadriplegia in 1978, which first prompted his long-term involvement in disability advocacy and advocacy development. He is a past chair of the WA Disability Services Advisory Committee, and member of various former government disability policy advisory committees, including the Disability Advisory Council of Australia. He is a past convenor of the Australian Advocacy Network and past Executive Officer of People With Disabilities WA. He was a Member of the former Guardianship and Administration Board WA and is currently a Senior Sessional Member of the State Administrative Tribunal of Western Australia. Erik is known as an author of many articles, commenting from a disability perspective. His PhD thesis (2003) was entitled "Good life in the balance: a cross-national study of Dutch and Australian disability perspectives on euthanasia and physician-assisted suicide." His main current interest is how disability experience may provide a practical guiding story to a sustainable world. He is an Adjunct Lecturer with the Centre for Research into Disability and Society, Curtin University of Technology, WA.
Dr. Christopher Newell is a Senior Lecturer in Medical Ethics at the University of Tasmania.
Maurice Corcoran is a past President of the Physical Disability Council of Australia.