Christopher Reeve and Bob Carr dehumanise disability - stem cell research not the best solution

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 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 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 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.

Who is the bunny?