Epistemic Status: Low-to-medium confidence, informed by my experience with having a disability as an EA. I think the included recommendations are reasonable best practices, but I’m uncertain as to whether they would make a tangible change to perceptions of the EA movement.
Summary
The EA movement has historically faced criticism from disability rights advocates, potentially reducing support for EA and limiting its ability to do good. This tension between EA and disability advocacy may be as much a matter of poor EA communication around issues of disability as a matter of fundamental philosophical disagreement. Changes to communications practices regarding disability might therefore deliver major benefits for relatively little effort. Particular recommendations for improving communications include:
- Avoiding unnecessarily presenting EA and disability advocacy as being in opposition
- Being careful to only use DALYs when appropriate and when properly contextualized
- Increasing the quantity and diversity of EA writing on disability
Introduction
The Effective Altruism movement has had a somewhat contentious relationship with the disability advocacy community. Disability advocates have critiqued EA via protests, articles, and social media posts, arguing that the movement is ableist, eugenicist, and/or insufficiently attentive to the needs of disabled individuals. Yet the EA community is often substantially more inclusive than society at large for people with many disabilities, through aspects such as availability of remote work, social acceptance of specialized dietary needs, and provision of information in a wide variety of formats. Moreover, while there are some areas in which EA’s typical consequentialism may have fundamental conflicts with theories of disability justice, these areas are likely much more limited than many would assume. In fact, since people with disabilities tend to be overrepresented among those living in extreme poverty and/or experiencing severe pain, typical EA approaches that prioritize these problems are likely to be substantially net beneficial to the lives of disabled individuals. Given this context, I think it is likely that the conflict between disability advocates and effective altruists is as much a problem of poor EA communication as it is a problem of fundamental philosophical difference. This breakdown implies that conflicts between EAs and disability advocates might be substantially reduced via changes to EA communications practices.
While changes to communication approaches carry some costs, I believe the benefits from improved communications around disability would probably outweigh them. There are three potential areas in which I think the status quo hurts the EA movement. First of all, it likely drives off potential donors, employees, and advocates with disabilities, reducing the resources with which the EA movement is able to do good. Second, it may prevent dialogue between the EA and disability advocacy communities that might productively identify effective interventions focused on people with disabilities. Finally, it may reduce support for the EA movement among the wider community of people who care about the interests and concerns of the disabled community. In comparison to these harms, I think the modest efforts required to improve on current EA communications around disability issues are likely to be noticeably less costly. In the next section, I identify three practical areas in which communications could likely be substantially improved.
Suggested Methods of Improving Communication
Avoiding Unnecessarily Presenting EA and Disability Advocacy as being in Opposition
In What We Owe the Future, Will MacAskill describes his progression to belief in longtermism as follows:
It took me a long time to come around to longtermism. It’s hard for an abstract ideal, focused on generations of people whom we will never meet, to motivate us as more salient problems do. In high school, I worked for organisations that took care of the elderly and disabled. As an undergraduate who was concerned about global poverty, I volunteered at a children’s polio rehabilitation centre in Ethiopia. When starting graduate work, I tried to figure out how people could help one another more effectively. I committed to donating at least 10 percent of my income to charity, and I cofounded an organization, Giving What We Can, to encourage others to do the same.
This part of the introduction is the only mention of disability in the entire book. Later portions of the text include discussions of abolition of slavery, women’s suffrage, and LGBT+ rights, but no discussion of disability advocacy or the relationship between longtermism and disability. It seems entirely reasonable for readers wondering about longtermists’ attitudes toward disability to be concerned by the implicit contrast drawn between MacAskill’s prior volunteering to help the disabled and current philosophy that appears to have no place for people with disabilities.
But I think this issue is fundamentally one of communication, not of deep philosophical disagreement. MacAskill describes the longtermist dream of the future by saying “if my best days can be hundreds of times better than my typically pleasant but humdrum life, then perhaps the best days of those in the future can be hundreds of times better again.” When I think of this eutopia, I imagine a world without ableism, a world with far greater respect for bodily autonomy, and a world with radically improved ability to treat unwanted pain. This is a world wholly consistent with disability rights, just in ways that MacAskill doesn’t take the time to describe. Similarly, MacAskill talks about wanting to keep fossil fuels in the ground in order to preserve the opportunity for another industrial revolution should humanity suffer a great technological setback, a proposal that one critic describes as a “crime against the future.” When I think of the importance of recovery from a technological setback, I think of the individuals who would otherwise needlessly suffer or die from disabilities that industrial technology is able to accommodate. By omitting these types of considerations in his discussion, MacAskill creates an unnecessary contrast between longtermism and disability advocacy. Future EA writers should be sensitive to drawing these kinds of contrasts, whether explicit or implicit, when no real contrast exists.
Treading Carefully when Using QUALYs and DALYs
Early versions of disability weights (1993-2004) were established via surveys of medical professionals. Weights were developed by asking respondents to consider a variety of differing thought experiments, such as the tradeoff between life extensions for different patient groups shown in the below image. The decision to survey medical professionals in order to set weights was made despite the fact that architects of the DALY scale noted that “various empirical studies have shown that patients and ex patients adapt to their own health state and value this as less severe than non patients.” Thus early iterations of the DALY tended to assign high weights to conditions that were disabling but not painful, such as blindness (weight of 0.5-0.7 out of 1) and deafness (weight of 0.24 - 0.36 out of 1). In the PTO1 thought experiment shown below, this implies that the average medical professional respondent indicated that they would consider it equal to extend the lives of 1000 sighted people by one year or to extend the lives of ≥2000 blind people by one year.
In light of these methodological concerns, it is understandable that disability rights advocates have strongly critiqued the DALY framework. A particular concern is the potential use of DALYs (or the somewhat related QALYs) as part of decisions related to healthcare rationing. The 2004 disability weights imply that the same life extending treatment would avert more than twice as many DALYS when given to a sighted person as to a blind person. Disability advocates quite reasonably worry that such weights that do not reflect their experiences regarding quality of life could be used to restrict access to care.
The DALY framework has undergone substantial revision since its initial creation, with the GBD 2010 removing many of the most harshly criticized methodological aspects of previous editions. As a result, the disability weight of blindness for example was reduced from 0.57 in the GBD 2004 to 0.195 in the GBD 2010 (note that the 2010 methodological changes are not without their own critics either). But significant skepticism of the framework remains, and I think this is important to keep in mind when communicating EA research. To give a concrete example, when I sent the conclusion of the Rethink Priorities Moral Weight Project to a close friend of mine, she stopped reading the post when she got to the line “Many EA organizations use DALYs-averted as a unit of goodness. So, the Moral Weight Project tries to express animals’ welfare level changes in terms of DALYs-averted.” In practice, many of the most prominent EA organizations don’t directly or primarily use DALYs because of various methodological and moral concerns, so RP’s statement isn’t even necessarily correct. But this type of over-emphasis on the DALY framework or failure to contextualize the use of DALYs can drive away people who are concerned about the framework’s historical issues and potential for misuse. Future EA writers should consider adding context when using DALYs for a particular analysis and should consider using alternate weighting schemes such as WELLBYs if appropriate.
Increasing the Quantity and Diversity of EA Writing on Disability
There is an overall paucity of EA writing that deeply addresses questions of disability. 80,000 Hours had no substantial discussion of disability in its career guide or any of its podcast episodes, other than occasional mentions of DALYS averted as a unit of impact. I am not aware of any EAG talks focused on the interactions between EA and disability. And as discussed above, discussion of disability is wholly absent from What We Owe the Future. This is not to say that there is no writing at all out there—Ozy Brennan and Amanda Askell have both written deep and insightful pieces about the interactions of EA and utilitarianism with disability rights. But this is just two authors, both writing in the form of personal blog posts.
Given the relatively small amount of writing on EA and disability, it is understandable that those interested in understanding EA’s attitudes towards disability often focus on Peter Singer’s writing on the subject (which almost entirely predates the modern EA movement). Without a wider variety of more contemporary writing, and without that writing getting placed in more prominent venues, it is unlikely that EA attitudes towards disability will avoid being defined by Singer’s work. This is a shame, since Singer’s work certainly does not represent the full range of views in the modern EA movement.
For me, living with a disability has underscored the urgency and importance of preventing pain, and has strengthened my commitment to EA principles. Amanda Askell has similarly described living with a chronic pain condition as “gazing into the eyes of my enemy.” I think that this kind of writing is valuable because it shows how EA can be not only compatible, but greatly informed by disability. More EAs (especially those with disabilities) should write about and discuss disability, and EA leaders and organizers should consider opportunities to bring more of this kind of discussion into prominent venues.
Conclusion
In this post, I’ve tried to lay out some thoughts about where EA might be going wrong in communications around disability-related issues, and ways that communication could improve. I’m hopeful that the EA and disability rights communities could cooperate much better in the future if EAs were to adopt some of these ideas. I’d be very interested in others’ thoughts on the subject, as well as on whether I’m missing other existing examples of good writing regarding EA and disability.
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:
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 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