‘Futureless persons’: shifting life expectancies and the vicissitudes of progressive illness
Bibliographic record
Abstract
Medical technological advances can have profound effects on people's lives by extending the life course and creating uncertain futures. This is the case for a number of persons with 'diseases of childhood' who can now survive well into adulthood with technological support. This paper draws on a Canadian qualitative study of young men with Duchenne muscular dystrophy (DMD)which examined the effects of a shifting life expectancy on personal identities. Engaging with Pierre Bourdieu's central concept of habitus, we discuss the temporal dimensions of social exclusion and marginalised identities. Participants' narrative accounts revealed how their dispositions were orientated to a shortened lifespan that exerted damaging effects regardless of actual lifespan. Compounding their material, social and symbolic isolation was a temporal isolation whereby the men had lived every day anticipating that it could be their last for as much as a decade. The findings suggest a need to re-orient medical and social discourses to serve and include adults with DMD and other conditions previously limited to childhood in their communities.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.004 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.005 | 0.015 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".