Categorizing quality of life based on personal testimony is a challenging task. The reasons you listed show many specific problems, and more generally, human judgement is fickle and error-prone. For instance, Thinking Fast and Slow claims that we are loss-averse and that we overweight the cost of losing something. I wonder, then, how the responses of perceived quality of life differ between people who were born with particular illnesses (like blindness) and people that suffered from it later in life.
The inherent fallacies in human judgement cause me to wonder if it can ever be a reliable source to quantify the effect of illnesses. At the risk of being hyper-pragmatic, perhaps we should attempt to quantify the effect of illnesses by only considering the degree to which the illness impacts a person’s ability to provide useful social function.
Of course, this approach also has many inherent issues. For one, meaningfully quantifying this would be incredibly challenging if not infeasible. It would also likely weight the value of the rich much higher than the value of the poor.
“Making blunt pushes for different policies are likely to be unimpactful on policy or harmful if impactful.” I think that this is true in many cases, but is often not considered by activists lobbying for change. It’s very easy to protest in favor of an ideal, but asking for an extreme alternative immediately seems naive to people in positions to cause direct change. In my opinion, activists are most effective when they consider the pressures that are preventing change from the current state, and ask for alternatives that are mindful of these pressures.
Great example that we need to take the time to educate ourselves and assume that most of the people making decisions are smart, capable people.