Then journalists write it up as a major clickbaity sciencey news story. It's got tons of coverage, but in not one case can I find someone who actually talked to people who have the specific disabilities, many of whom are a) doing just find and b) when they aren't doing fine, it's because of access to resources and experiencing stigma.
- Why is this a study that gets published in a major medical journal?
- If the study has value, it's a case of measuring stigma rather than measuring what it's like to have a disability.
- The researchers know this. They write:"Patients may underestimate their abilities to adapt to certain health states, such that once-feared states become more tolerable once they are experienced."
- Many of the journalists know this too:
For another (and this is probably more important), studies in psychology show that people are reliably terrible at what’s called affective forecasting — that is, predicting how they’ll feel in the future. In one rather eerily relevant study, psychologists Dan Gilbert (of Harvard University) and Tim Wilson (of the University of Virginia) observe that most (healthy) people say that if their quality of life is low, they would rather not have medical interventions designed to give them more time. “However,” as the American Psychological Association’s website notes, “when medical researchers interviewed people who were slowly dying and experiencing a very low quality of life, such people almost unanimously reported that they would go to great lengths to add even a few days to their lives.” Our future selves are frustratingly unknowable.From Quartz
The patients surveyed had not experienced any of the limitations themselves, and the study authors write that it’s certainly possible the patients are overestimating the difficulty of living with these challenges. In addition, the number of patients surveyed was relatively small and limited to a single hospital in Pennsylvania. Nevertheless, this work suggests that health care providers should check with patients about their own priorities before treatment.
Sure, check with patients, but understand those patients need guidance due to stigma.
Telegraph too -
However, researchers noted that, as none of the patients had experienced the conditions described in the survey, they may have misjudged how they would feel in such circumstances.
- As a science journalist, if one is going to write up this stigma-measuring study, you have to do it in a way that doesn't promote more stigma. One simple way would be to talk to actual disabled people. For example, if lots of people who aren't incontinent say that they'd rather be dead than incontinent, maybe talk to people who are incontinent about their lives, how they manage, and where they encounter problems (again, a social model approach).
We need journalists trained to not write about disability without getting reaction quotes from people who are disabled. They've learned to do this with other topics, but disability lags far behind.