Thanks Susanne. That's going deep. I have only read this message of the thread and now looked back over some of it. Much of what you say here resonates strongly with me. And ... like you I was told in 1978 that there would be cure for spinal cord injury "within (the magical) 5 years".
The core of what you are saying is, I think, that individual people are relational creatures--and relationship shapes identity. These relationships include internal relationships to our selves; our relationships with/to other individuals; our relationships with/to others groups; the relationships of groups that we belong to with/to other groups; relationships with our environment, social and ecological. I think this is pretty well consonant with Susan Wendell's 'social model' of disability (The rejected body). There is also the individual's relationship to The Whole.
Life exists because of its light and shadow, its paradoxes--hence relationship is inevitable for life. There is no life without differences and tensions. Carl Jung believed that the most fundamental experiences of suffering could not be solved, only outgrown--by engaging the polarities within ourselves. It is impossible to not be personally changed--transformed--by such engagement. One of the paradoxes within people is a need for being a distinct, developing individual and being connected to others and the wider environment -- or being "pulled between autonomy and absorption into the machine" as 'your' vorticists (why do I get a mental picture of Star Trek's dr Spock?) have it . Thus for instance the polarities of selfishness and altruism and the dynamic spectrum in between. Like it seems that vorticists say, whether and how we engage these polarities (the extremes) of the paradoxes within us, and within the world, influences our human development. There is literature on life satisfaction, wellbeing or quality of life of people with significant impairment that is equal or better than that of the non-disabled population. Some of that literature indicates that this wellbeing is accompanied by a sense of inner growth and involves personal transformation towards being more socially oriented people. They changed their situation because they came to see it in a different light. You could say that a greater sense of wholeness is possible by engaging with the paradoxes of life. I would agree then with the vorticists that: "The area in the center of the vortex is an area of maximum potential energy, a state of being both "static and dynamic". The disability experience of wellbeing in the midst of great physical/socio-cultural challenges is best when I accept that my impairment is as it is and that I have to live with that while all kinds of difficulties are often at best minimised and many are never absent. Working towards the day that I can pull up or down my pants by myself (I just lie back and chew an apple while others do this for me ;-] as a feminist once famously declared--but do not recall her name ) would not aid my wellbeing because I would not be engageing with the full spectrum of the paradox that is a desire for a whole physical body (cure) and my need to be a whole developing person in community with others. My wellbeing is mainly determined by the latter but that does not mean I should neglect my body as insignificant. Clearly it is the vehicle within which this development must be played out so I have to give it its due--within reason.
It is interesting that a debate about cure from impairment then comes to involve a discussion about suffering and, unlike the downward pull of a vortex, upward transformation. Whereas I, and many people with disabilities would not necessarily describe the impairment itself as involving suffering (apart from perhaps socio-cultural injustices), clearly others, as do media portrayals, often do. Cassell's text 'The nature of suffering' talks about people 'enlarging' themselves in overcoming pain and suffering--that is becoming more whole in some sense--involving social interaction and support. Helen Luke (Old Age: Journey into simplicity) has explained the real meaning of suffering as 'to bear' a condition--involving such wholeness--and that one really suffers when one is borne down upon, crushed, by the condition.I have to tread gingerly here for obvious reasons. This may smack of judgmentalism towards those who seek cures for their disability and of invoking the old hero/victim/holy innocent roles. Not so and not intended. It is just a fact of life that a certain wellbeing can be gained by engaging with the full spectrum of life's paradoxes, that certain personal transformations will occur as a result of this and that such transformation involves a view of the world and of oneself that weighs the value of seeking a cure for disability differently than before that transformation. Or, if you like, as you put it they: "create the exhibition space, rig the lightning" differently. That is not saying "engagement good", "cure bad". It depends what the facts and one's views are. I readily acknowledge that there would perhaps be many who are so sick and tired of fighting the socio-cultural determinants of disability that they want a cure or want to be dead (as in the euthanasia debate). But that still validates the importance of the socio-cultural context in shaping disability. In my view there are ethical limits to the seeking of medical cures and I deplore manipulation of people's desire for cure by large commercial interests, such as is happening with the embryonic stemcell issue. There is lots of work left to be done on the socio-cultural causes of disability. There are serious choices to be made about where to focus our limited public and personal resources--cure or social change, where both have legitimacy on their relative merits. Society as a whole would possibly be rewarded by greater wellbeing (and sustainability) if it engaged with that part of that paradox--socio./cultural causes for ill-being. I think it is diminished by its overemphasis on cure (if you want a glimpse of what that looks like look at http://www.extropy.org/). But that's my view--from where I 'stand'!
PS Sorry for the length but Susanne's construct is both complex and simple and is not easily responded to in words.
Erik Leipoldt
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