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I don’t think it is so easy to avoid looking bad to disability rights activists by changing the weights. Either disabilities get a high weighting, in which case it makes sense to put a lot of emphasis on preventing and treating disabilities, but less emphasis on saving the lives of people with disabilities, or they get a low weighting, in which case saving the lives of people with disabilities is measured as similarly valuable to saving the lives of able-bodied people, but also there is little emphasis on preventing or treating disabilities. Both options seem potentially offensive to some people, and any solution seems like it is fundamentally shifting between these two options—although some ‘solutions’ obfuscate this fundamental tradeoff.
(Also, perhaps more importantly, I think we should design our evaluation system to be true / good / consistent with our moral intuitions, rather than prioritizing PR. If disability activists have good arguments we should heed them, but the mere fact that they find some conclusion offensive is not a strong argument. )
I wonder if there might also be some background level of skepticism in the disabilty community about explicit cost-benefit analysis, because of how often “it’s too expensive / we can use the money better somewhere else” is used in other contexts as a justification not to provide supports for people with disabilities. I’m not saying that is the case, only that I wouldn’t be surprised if it were.
I wouldn’t really expect the disability advocacy community to be united on which tradeoff should be preferred.
(But I also wouldn’t expect mechanisms of PR-risk aversion to highlight the variance or disagreement within the disability advocacy community, because those mechanisms tend to favor the more articulate/charismatic side at the expense of others).
This is a good point, and it’s likely that for many people there will be quite a wide range in the variance of how they experience a disability. If so, then you’d expect most people with a given disability to disagree with the GBD weight, simply because they would personally rate it somewhat higher or lower than the average value.
EDIT to add: In fact it seems the 2010 GBD weights were obtained by surveying members of the public, so it could be the case that the weights are either higher or lower than most individuals with a given disability would have indicated if they had been asked.
Thanks for your comment! I would basically distinguish three questions:
Can we address critiques of the DALY framework by turning a big dial that says “disability weight” on it and constantly looking back at the audience for approval like a contestant on The Price is Right? - Probably not.
Can we address critiques of the DALY framework by selecting moral weighting frameworks that are appropriate for our particular applications, addressing methodological critiques when they get raised, and taking care to contextualize our usage of a particular framework? - Maybe.
Is the disability advocacy community a monolith that will be 100% united in approval or disapproval for a particular methodology? - Definitely not.
In general, I agree that we should be trying to have true/good evaluation systems, not systems that are optimized for PR. I just think that right now we’re not on the Pareto frontier of that tradeoff.
I’m pretty sure the answer is “No, we can’t”. The whole point of DALY is that it lets us compare completely different interventions. If you replace it with something that is different in each context, you have not replaced it.
I think the best we can do is to calibrate it better, buy asking actual disabled people about their life quality. I think the answer will be very different depending on the disability, and also surrounding support and culture. This can be baked in, but you can’t change the waits around for different interventions.
Sorry if my comment was unclear. I don’t mean that we should use a different set of weights when looking at different interventions, I mean that we should use different weighting frameworks depending on the types of questions we are trying to ask. If we’re trying to quantify the impacts of different interventions on health outcomes, the post-2010 DALY scale might be reasonable. If we’re trying to quantify the impacts of different interventions on wellbeing, then WELLBYs might be reasonable. If we value improvements in health outcomes independent of their impact on subjective wellbeing, then some type of blended framework (e.g. GiveWell’s moral weighting scheme) might make sense.
I’ll return to the RP Moral Weights Project as an example of what I’m critiquing (the Moral Weight Project is fantastic in lots of ways, I don’t mean to say the whole project is bad because of this one critique). For the project, the authors are trying to develop weights that express animals’ changes in hedonic wellbeing in terms of human DALYs. But it’s not clear that DALYs are a coherent unit for what they’re trying to measure. The give trying to “estimate the welfare gain from, say, moving layer hens from cages to a cage-free system” as an example of the kind of application they’re looking at. But locking a human in a cage wouldn’t obviously change the number of DALYs gained in the world, at least under the post-2010 definition. For that application, a unit that included subjective wellbeing would make a lot more sense. That’s the kind of thing I’m trying to get at.
But I do agree with you that asking disabled people about their experiences and incorporating those results into whatever weighting scale we use is a very valuable step!
This topic makes me sad and really angry. I can feel my heart beating fast as I type. Feel free to suggest significant changes.
I roughly agree with this post. That said, I think it’s more important to think empathetically/accurately than to communicate perfectly in the current environment.
I think empathy is good. And often we don’t have enough with disabled people. In a better world, we would not use disability as a throwaway example in thought experiments. And we would be able to call to mind the experiences of disabled people and how their lives are different to our own.
Likewise I dislike futurism which hand waves about how we are going to hear the preferences of all people. People with disabilities are often left out of our future utopias and that seems bad. I can sympathise when those people assume that there will be no one who is loyal to them in the room when it the decisions get taken. I worry a little about a future that is great for me, but for whatever reason, not for many people.
That said, empathy should also lead us to conclusions that are more uncomfortable. I think it’s underrated to say that disability is hard and almost always worse than being able-bodied, especially for those that have it. I think it’s patronising to softly pretend otherwise, as we so often do (not that this post does). I have pretty extensive experience of disability: my father is physically disabled, my nephew has learning disabilities, I have known many people with mental disabilities of the sort we don’t often talk about—the draining, sometimes cruel, kind—where someone is just very difficult to have as part of your community. In my experience disability advocates do not represent many of the disabled people I have known.
Also, I think that nearby is the ever changing vortex of exhausting respectability politics. What new words to use, what new categories without actually affecting the object level. I agree with thinking more about disabled people but I am confident that most of the disabled people I’ve known do not want us all to spend an hour a year worrying about whether we are using the right words—they want resources and systems that fit them. And one isn’t necessarily a strong signal for the other.
Because ultimately, we should want to think well about disability even if it’s very uncomfortable. Because disabilities are quantifiable just like everything else and we are trying to quantify things well so we can prioritise scarce resources. I worry that that in 10 years we will think less well about disability because there aren’t always nice tradeoffs here. I doubt that serves disabled people well either. I don’t think we should discuss this stuff often but I think when we do, thinking empathetically and accurately is more valuable than saying things that are socially comfy.
An example. Here is a quote from Peter Singer
This quote makes my blood boil. Has Singer never met the parents of a disabled child? Would they be happier if an outside agent killed their child because it would “according to the total view” be right? No. The thought experiment is divorced from reality. Would he use this example to argue that healthy patients should be killed for their organs? I don’t think this is healthy bullet-biting, I think it is trivially-wrong naive utilitarianism. It isn’t the world we live in.
But there is something true here. Raising a disabled child is gruelling work. And at times I am sure many parents have wished things were another way. I guess that some have resented their children. I don’t think this exonerates the passage, but there is something actually true here. I would not judge parents who sought an abortion of a disabled child for these kinds of reasons.
So maybe we can just demand that Singer didn’t write this. The difficult thing is that whatever it is in Singer that writes stuff like this is (I guess) the same thing that makes him write so much other controversial stuff, much of which is great. For the same reason he says what he thinks is true here, he stands up for the welfare of animals and those in poverty. I think the same is roughly true of Hanson, who has said pretty ugly sentences, but it is that lack of fear of ugliness that has also produced some of his best work.
I don’t really know what to do here. I think disabled people worldwide are probably better of with a Singer who says many controversial things than one who doesn’t, though I think, on balance I’d prefer he hadn’t written this paragraph.
In conclusion
I agree that EA and disability advocacy are not in opposition
The disabled people I know are not well represented by disability advocacy either I guess many aren’t
I sense, on balance that the world needs more DALY usage rather than fewer, but maybe QUALYs are better still. But that a fear of using the wrong one is worse than using either
I would like more EA writing disability to the extent that people think it is the most important thing to be working on. We are in triage, even here
Since being more empathetic is useful and not that hard, I think some writing on disability would be good. I guess that what should happen is that we have a few key updates that we should all make and then don’t discuss it again for a year. That seems a pretty manageable way to do topics like this
Personally, I am worried that we aren’t building better decision making systems for the futures we imagine. Disabled people may think that their preferences are underrated in key processes and I’d guess they are right. This concerns me—if the future doesn’t take the consciousness of all beings into account then are we really being good?
I think a good reading item on the empathy front is this article from a disability rights lawyer about her encounter with Singer. It is a very clear and honest piece, I think about it often.
https://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html
Thanks for writing about this topic! I would like to see more discussion about disability on the forum and in other places!
On a personal note, I have dynamic disability (disability that varies in how it affects you over time and in different periods) and part of why I’m able to work full time currently is the flexibility and understanding that my remote-first employer and amazing manager have afforded me.
Part of learning about my own conditions and looking at how they impact me and others like me, and their global burden is what led me to want to look at the largest sources of suffering and how I could help to alleviate them.
Experience of disability is obviously very diverse and personal, and is not always negative but I am definitely motivated to alleviate suffering of others based on my own experiences.
I sadly don’t contribute to this topic as much as I’d like as I’m already stretching myself in my current role so thanks for your voice here!
Thanks for writing this! A friend and were just discussing this the other day.
As the friend in question, I would like to second Gemma’s comment and endorse the idea that EA should take engagement with disability more seriously.
Honestly, when I speak to friends in the wider disability community, the horror in which the Peter Singer viewpoint is taken (and I accept that the perception *might* be worse than what Singer is – I think – trying to say about his views on personhood and suffering; I’m not entirely sure) and the perception that Singer is a founding philosophical father to the EA movement means that EA is very much tainted by that. Nathan has picked up on some of this in his comment.
So the empathy point that Nathan makes does overwhelm, and that’s not even before you enter the discussion that medical models of DALY or QALY etc. are rejected by many in the disability community in favour of social models (or more complex. Cf Tom Shakespeare).
I don’t have super good advice here, perhaps to the extent you may not share Singer’s views on disability, you may want to strongly let disability people you talk with know, as from my conversations that viewpoint taints everything.
You may also try and have some disability people chat on podcasts, or take more seriously their views in discussion. For instance, I’ve not seen an EA discussion paper around the social model of disability.
Still, overall better comms would not be harmful at worst neutral, and increasing empathy, same.
I think the problem isn’t mistakes in the methodology, nor is it utilitarianism in general, but one specific feature of DALYs: it is multiplicative instead of additive.
Since DALYs is the years of life lost times the disease burden (where the disability burden is a scalar determined by surveys), the marginal utility of a disabled persons years of life is multipled by the disability burden.
If instead you had a unit that was years of life lost minus disease burden (where the disability burden is a number of years that can determined by same surveys), the marginal utility of a disabled person’s years of life and a healthy person’s years of life is the same!
So the problem isn’t trying to price every intervention in utils, it’s that DALYs specifically are an incorrect way to weigh years of life v.s. disease burden.
One advantage of multiplying is it shows it is helpful to cure diseases earlier, because the benefit is multiplied by the number of years of life remaining.
If you instead subtracted, it seems like we would have little reason not to delay treatment—because curing a 1yo and a 50yo of blindness would both count for the same number of years, implicitly valuing 49 years of sight at zero.
Can you clarify why you think it’s “incorrect” to conceive of disease burden as ongoing, or applying per unit of time, and more accurate to treat it as a per-life constant?
One objection to the “per-life constant” approach is that it could easily incorrectly imply that some short-lived but happy disabled lives are net-negative for the person living it. (Suppose the constant burden for deafness comes out to one year per lifetime, and then imagine a deaf child who lives happily for less than one year. So long as their short life was happy, it would seem inaccurate to call it net-negative! By contrast, the standard per-unit-of-time approach allows that happy deaf lives are always worth living, just not quite as good as they would have been without the mild disability.)
Thanks so much for writing this.
In the specific instance that someone challenges you over using QALYs/DALYs at all, what would you say in response?
It seems to me that you do at some point have to bite the bullet and believe that ‘some disabilities are more life limiting than others’; and ‘there are many disabilities that I would choose to avoid’. But then I feel like I’m implicitly saying something about valuing some people’s lives less than others, or saying that I would ultimately choose to divert resources from one person’s suffering to another’s.
This actually came up in a corporate talk that I did and I fudged the answer, incidentally.
This is a conversation I have a fair amount when I talk to non-EA + non-medical friends about work, some quick thoughts:
If someone asks me Qs around DALYs at all (i.e. “why measure”), I would point to general cases where this happens fairly uncontroversially, e.g.:
These kinds of questions entail some kind of “diverting resources from one person to another” in a way that is pretty understandable (though they also point to reasonable considerations for why you might not only use DALYs in those contexts)
If someone is challenging me over using DALYs in context of it being a measurement system that is potentially ableist, then I generally just agree—it is indeed ableist by some framings![1]
Though, often in these conversations the underlying theme isn’t necessarily a “I have a problem with healthcare prioritisation” but a general sense that disabled folk aren’t receiving enough resources for their needs—so when having these conversations it’s important to acknowledge that disabled folk do just face a lot more challenges navigating the healthcare system (and society generally) through no fault of their own, and that we haven’t worked out the answers to prioritising accordingly or for solving the barriers that disabled folk face.
If the claim goes further and is explicitly saying interventions for disabilities are more cost effective than current DALYs approach give them credit for, then that’s also worth considering—though the standard would correspondingly increase if they are suggesting a new approach to resource allocation—as Larks’ comment illustrates, it is difficult to find an singular approach / measure that doesn’t push against intuitions or have something problematic at the policy level.[2]
On how you’re feeling when talking about prioritising:
This makes sense, though I do think there is a decent difference between the claim of “some people’s lives are worth more than others” and the claim of “some healthcare resources go further in one context than others (and thus justify the diversion)”. For example, I think if you never actively deprioritised anyone you would end up implicitly/passively prioritising based on things like [who can afford to go to the hospital / who lives closer / other access constraints]. But these are going to be much less correlated to what people care about when they say “all lives are equal”.
But if we have data on what the status quo is, then “not prioritising” / “letting the status quo happen” is still a choice we are making! And so we try to improve on the status quo and save more lives, precisely because we don’t think the 1000 patients on diabetes medication is worth less than the one cancer patient on a third-line immunotherapy.
E.g., for DALYs, the disability weight of 1 person with (condition A+B) is mathematically forced to be lower than the combined disability weight of two separate individuals with condition A and condition B respectively. That means for any cure of condition A, those who have only condition A would theoretically be prioritised under the DALY framework than those who have other health issues (e.g. have a disability). While I don’t have a good sense of when/if this specific part of the DALY framework has impacted resource allocation in practice, it is important to acknowledge the (many!) limitations the measures we use have.
Also, different folks within the disability community also have a wide range of views around what it means to live with a disability / be a disabled person (e.g. functional VS social models of disability), so it’s not actually clear that e.g., WELLBYs would necessarily lead to more healthcare resources in that direction, depending on which groups you were talking to.
Thank you, this is helpful