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
When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore, if killing the haemophiliac infant has no adverse effect on others, it would, according to the total view, be right to kill him.
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.
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