I am a bit like Paul Brock ("Stemming a rising tide" by Leigh Dayton, The Australian, September 2, 2005), who has lived with motor neurone disease since 1996. I also have a doctorate, am married with two children and work. I have lived with quadriplegia since age 24, close to 30 years. Unlike Dr Brock I am not in favour of embryonic stem cell research.
But before I outline why, I declare that I am not a Christian and do not believe that labelling any contributor to this debate as religious, conservative or progressive is of any help in coming to an understanding of these issues.
Religious, conservative or progressive views all have legitimate contributions to make - on their merits. And various, including opposing, views come from such categories. But Justice Lockhart's (chair of the parliamentary review committee that is reviewing the 2002 stem cell legislation) reported comments do not inspire confidence that such labelling will not be allowed to continue to cloud the argument. He wants to strike a balance between “emotional reaction” and “rational progress”, creating a straw-man dichotomy between arguments labelled emotional and reactionary and arguments labelled rational and progressive.
One perspective that hardly ever comes up is the disability perspective unless it is to emotionally support the science lobby for widening of its research parameters.
However much I sympathise with Dr Brock's experience, I can take up Dr Brock's challenge, look him in the eye and say that, in his words: "it's not ethical to use embryos to look for cures for [his] disease". I oppose embryonic stem cell research for the following reasons.
I distrust the altruistic purity of the pro-embryonic stem cell (ESC) lobby in promoting embryonic stem cell research for finding cures. Scientists are not usually free from conflicts of interest with medical industries that fund them and I am not confident about their freedom from conflicts of interest with the ESC industry, reported to be worth around $100 billion. The use of embryonic stem cells does not necessarily stop at finding a cure. As I understand it stem cell lines will also have their uses in testing all kinds of products, including common consumer goods that are now more difficult to test. So is finding a cure just a PR sob story to pull in support for broad activities?
When scientists talk about curing the usual swathe of conditions, including spinal cord injuries, Alzheimer's and Parkinson's disease, they often take a warped view of living life with a disability. Not only may they describe such conditions as an intolerable burden for society but some are as arrogant as to foreshadow that "we may be able to produce a whole generation of people who have a pretty good quality of life right up until they die" (Professor Rathen, "Laws hamper stem cell research", The Australian, September 2, 2005).
A solid body of social research demonstrates that the majority of people who live with life-defining and significant impairments report levels of wellbeing as equal to, or even better than, the average Joe. This wellbeing is correlated with good levels of social support, acceptance and meaningful occupation of time. Some studies report “inner growth” to be an important factor in this wellbeing (sorry if that sounds a bit religious). And of course the world is such that there will never be generations who do not include members with impairments and disease.
By perpetuating a disability as being a burden and as a condition no one could bear to live with, the scientific, medical gaze undermines the already weak social position of people with disabilities in general.
Most people who have impairments are more disabled by public attitudes, exclusion, unemployment and poverty than by their impairment. Scientists do not seem to believe this. Or perhaps they won't because it would remove a useful emotional plug into the hearts of people who must decide about ESC legislation, while at the same time of course this passes for rational argument by the forces of progress. If we were really interested in the wellbeing (let’s forget “quality-of-life” as it is a useless term) of people with disabilities we would go with the evidence presented by their experience and genuinely address the many socially disabling factors.
Using embryonic stem cells is ethically controversial: no doubt about that. I would not want to avail myself of a cure for quadriplegia if this came at the expense of potential human embryos.
Of course I do not oppose ethical means to finding cures. Pursuit of medical cures however must be balanced with genuine efforts in ameliorating the negative social consequences caused by the medical view of disability.
There is an alternative to ESC and that is adult stem cell research. Some scientists claim this line of research to be more promising in therapeutic purposes than ESC.
Dr Brock is pro-research. So am I. I just don't see that it is beneficial for society, and in particular those people who have disabilities, to go for an ethically highly controversial cure, especially when much less controversial, and even directly beneficial, alternatives are available.
I trust that when Justice Lockhart swings his gavel he will diligently examine all the contributors' motives for their arguments - and examine his own beliefs about what is a worthy or unworthy argument.