Posted 31 October 2005 - 10:27 AM
Peter also wishes to share the following:
THE HIDDEN WORLD OF EXTRA LIFE
A proposal for a book
The advance of medical science and technology over the last hundred years has produced within the community particularly in the Developed World a new largely unnoticed population of people in ‘Extra Life’. The term ‘Extra Life’ has only recently been coined to give an identity to this diverse group of people suffering from a number of potentially terminal illnesses but whose life is sustained by ongoing medical or bioengineered supports. These life maintaining treatments do not reverse or cure the illness but rather prevent its development to a fatal state. Hence the idea that people while still with a potentially terminal condition have ‘extra life’ while their treatment is available.
This is no longer an insignificant5 number of people. People suffering type one diabetes for example in the UK alone number about 250,000. People needing regular renal dialysis number over 8,000, about 20,000 people rely on biotechnology to prolong their lives when they have heart failure and this number rises annually as treatments become more widely available. If you counted also the 300,000 or so people who have to have thyroid replacement therapy to replace thyroxine and thus maintain their wellness the numbers increase again.
If you look at the websites of patients groups with these various conditions a picture emerges of the lives such people lead in coping with their situation. Each has particular medical needs but what is striking also is how much in common these different groups have, maintaining wellness, sustaining morale and independence, preventing impoverishment and looking for new purposes and meaning within their new and usually reduced physical abilities. This group of people is slowly emerging from their long silence and disunity. This book seeks to set out an agenda for this new population and ask the questions as to what it means for society as a whole to create this semi dependent population.
The growth of interest in life extension, what is called transhumanism and the fundamentalist reaction against this all suggest that it might be a good idea to know what the people who live enhanced lives still uncertain because of an underlying condition have to say both about their extended lives and about their experience as medical guinea pigs which some are. This is not the exemplary community those who advocate life extension and enhancement look to, but it is the community that is opening the human experience of such change.
This is a community resulting from efforts to stave off death rather than to enhance human capacities but the things used, renal dialysis machines, heart implants, chemical therapies, are those things likely to be used to prevent illness in future rather than to palliate it as now. In Citizen Cyborg James Hughes looked forward to a brave new world. This book will point out the cost today of life prolongation and ask what we can learn for the future from it.
The proposed chapters are as follows:-
1. What is ‘Extra Life’? What defines it, what does it mean for those who have it, who are they, what numbers are they, are they significant as a community in any way?
2. What are the varieties of ‘Extra Life’? Onset, treatment, survival, palliation, quality, decline, second death.
3. Drug managed extra life. Diabetes survival, use of drugs to replace chemical functions in the body or to improve them.
4. Mechanically assisted ‘Extra Life’. Machine or device dependence.
5. Psychological issues. How ‘Extra Lifers’ feel and describe their needs.
6. Independence and Self development. How to deal with impoverishment, keep useful and active, play a part in society that is valued rather than nominal and dependent.
7. The Ethics of ‘Extra Life’. Who should have it, how shall they be chosen, how can some quality of life be assured instead of mere survival.
8. The social politics of ‘Extra Life’ cost benefit of a medically dependent increasing community, changes caused to society by the existence of such a community, likely political aspirations of people in ‘Extra Life’.
9. Extra Life and the future community of Cyborgs. Relating to the Transhuman movement.
10. Examples of ‘Extra Lives’. Case studies of people who are living the experience.
11. Handling and circumstances of the Second Death. Preparation for it.
12. Wider issues of meaning and purpose. Why prolong life, what for, how can it be beneficial to the community or the individual.
The Market
People in Extra Life their relatives, friends and carers
Medical professionals concerned with the consequences of long term palliative treatment.
Psychologists, social workers, sociologists concerned with individual care and their economic security.
Ethicists, bioethicists and philosophers.
Ministers of religion, and lay persons concerned with bio issues.
The dying and their carers
Nurses and anciliary medical staff, physiotherapists etc.
Futurists, bioengineers
Politicians
Members of the public interested in bio issues and communities of the future.
