"Wounds of Regret": Critical Reflections on Competence, "Professional Intuition," and Informed Consent in Research with Intellectually Disabled People
Bibliographic record
Abstract
There is an increased interest in including people with intellectual disability labels in social science research. The ethical conundrums involved in doing so are far-reaching, and labelled people remain chronically excluded from knowledge production on the basis of medicalized conceptions of competence commonly espoused by research ethics boards (REB). Here, I critically reflect on my experience making strategic decisions about accessing a writing group made up of labelled adults for my doctoral research. I respond to Kate Holland's 2007 question: "whose interests are served by current ethics review standards and what do they exclude?" (p. 904) by juxtaposing current ethical standards of critical disability studies with my REB's concerns about three issues: prospective participants' competence; their cognitive abilities; and a lengthy recruitment timeline. My reflections on these issues speak to feelings of regret and resilience, and what it can mean to take lessons from engaging in institutional ethics in an unsatisfactory way. This account offers snapshots of decisions leading up to a research project, and the ways in which ethics review frameworks remain rooted in biomedical epistemological biases that serve outsider researchers and exclude labelled people from research about themselves.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.004 | 0.090 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.006 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.002 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".