Utilitarianism is the view (roughly) that we ought to act so that we maximize happiness or welfare, and minimize suffering. I think of myself as quite utilitarian in my moral outlook. I have pretty utilitarian intuitions when it comes to policy-level decisions, and I think that utilitarianism has a lot of features that I think a good moral theory should have. I also think of myself as a supporter of those with disabilities. Part of what attracted me to the effective altruism movement was the idea that I might be able to help people who are suffering from illnesses abroad, including what we’d typically conceive of as disabilities (rather than non-disability illnesses), such as blindness caused by cataracts, untreated depression, and cognitive and physical disabilities caused by maternal and childhood malnutrition.

Given this, the emerging gulf between utilitarians and disability activists saddens me. I think of my utilitarian intuitions and my desire to help people with disabilities as two sides of the same coin. I think that we could shorten that gulf somewhat by clearing up some of the confusions that exist between utilitarians and disability activists. I’m going to consider five key objections to utilitarianism from disability activists, and highlight where I think there are genuine tensions between the positions, and where I think there are not.

(1) Utilitarians think that all disabilities are bad

Utilitarians think that something is bad insofar as it causes suffering or results in a loss of actual or potential welfare (e.g. we make three people happier instead of ten). But the theory doesn’t take a stance on what a ‘disability’ is, as distinct from an illness or anything else. What it cares about is whether the following is true of a given condition:

Harmful conditions: condition c is harmful if it causes a welfare reduction in expectation, as a result of either its intrinsic qualities or because people with condition c are treated badly

Utilitarianism is not committed to all or even any disabilities being harmful conditions in this sense. It might be that some disabilities are intrinsically harmful, but that this is compensated for by extrinsic benefits (e.g. the deaf community is a particularly strong one, and perhaps this greatly improves the lives of deaf people such that the condition is not net harmful). It might be that some disabilities are not intrinsically harmful (e.g. conditions that make one different from others, but don’t cause one suffering or social stigma).

Of course, it seems plausible that a lot of disabilities will be harmful in the sense above. Some disabilities involve chronic pain, which many report as being detrimental to their wellbeing. Some disabilities are highly stigmatized, which is also detrimental to people’s wellbeing. Utilitarians believe that we should aim to eliminate these kinds of welfare reductions: for example, by finding the sorts of pain killers that can safely eliminate chronic pain in those whose lives are made worse by it, and by eliminating the kinds of social stigma that cause needless suffering to those with disabilities.

One valid criticism that I think is worth mentioning here; I think that, in the past, utilitarian scholars have been too careless in the way that they have talked about particular disabilities. We should not treat all disabilities as though they were harmful, and we should try to gather as much evidence about how harmful a disability is (e.g. from studies that ask disabled people how their disability impacts on their life) before we discuss it. My impression is that contemporary scholars are much more aware of this, and I think this is important and good.

(2) Utilitarians want to get rid of all disabilities

So far I have only mentioned interventions that involve ‘treating the symptoms’ of disability. But what about getting rid of the disability itself? As we have noted, the utilitarian wants to get rid of the welfare reduction that a condition causes. One way of doing that is by eliminating the harms that a condition causes without eliminating the condition itself. What is left over is a ‘mere difference’ akin to having red hair or liking jazz, which utilitarians have no interest in getting rid of. But what about cases where the best way to treat the symptoms is to ‘cure’ the condition, rather than treat its symptoms?

Suppose that someone is blind from birth and that this negatively impacts on their welfare (by their own report). Now suppose there are two treatment options available: we can try to surgically reverse the blindness entirely (call this ‘cure’), or we can try to make this person’s life as a blind person roughly as easy as that of a seeing person without ‘curing’ their disability (call this ‘assist’). We have to consider the harms and benefits of curing and assisting, which will roughly consist in the following:

(a) the cost of ‘cure’ vs. ‘assist’

(b) the expected welfare benefits to the person of ‘cure’ vs. ‘assist’

(c) the person’s preference of ‘cure’ vs. ‘assist’

(d) the benefits of ‘cure’ vs ‘assist’ if we value human diversity

Together, (a) and (b) give us a rough cost-benefit analysis of ‘cure’ and ‘assist’ for the welfare of the person in question. For example, if ‘cure’ is half as good as ‘assist’ for the person’s welfare, but the costs are such that we can either ‘cure’ 1000 people or ‘assist’ 3 people, then this favors ‘cure’ over ‘assist’ when we are working with limited resources. But it’s important that we take into account all of the harms and benefits of our actions. For example, it’s very important to uphold norms where we respect people’s choices about their own treatment, as (c) states. Such a norm is easy to justify on utilitarian grounds.

I think a key point of disagreement here is about how much we should value (d). Utilitarians will value human diversity for a few reasons: for example, because people like having qualities that make them distinct, and because it’s good for society to consist of people different qualities and views. But it won’t count this as an intrinsic value. If we encounter an alien planet that has a well-functioning and happy society that happens to be completely homogeneous, utilitarianism doesn’t say that this alien planet is worse than a similarly well-functioning and happy society that happens to be heterogenous.

We can imagine toy cases where the utilitarian and the person who gives greater value to (d) might diverge. For example, imagine that Tom has been blind from birth and this causes him some loss of welfare. Suppose it would cost $100 to surgically treat his blindness or $200 to assist him to the point that he’d be just as happy as he would be as a seeing person. And Tom is completely indifferent between these two options. If the utilitarian values the diversity benefit of having a blind person (where blindness is not harming their welfare) at less than $100, then it will say that it’s better to surgically reverse Tom’s blindness than to assist him. But if disability activists think that the diversity benefits are greater than $100, then they’re going to prefer assisting Tom to surgically reversing his blindness. I think that how much to value diversity is going to be a point of disagreement among both utilitarians and disability activists, and utilitarians and other utilitarians. Human diversity is the kind of thing that it’s hard to place a value on. For example, would we ever be justified in refusing to let someone ‘cure’ their own disability because we value the diversity of having both able-bodied people and disabled people in our society? These are difficult questions, but my guess would be that disability activists will give more moral weight to human diversity than utilitarians, on average.

To conclude, utilitarians don’t want to get rid of all disabilities, but it’s likely that they will favor ‘cure’ over ‘assist’ in more cases than disability activists will, because they place less value on people being differently abled than disability activists, on average.

(3) Utilitarians think it would be better not to bring disabled people into existence

As we’ve seen above, utilitarianism is not committed to the claim that all disabilities are harmful. In the case of harmless disabilities, the utilitarian will be roughly indifferent about whether you bring them into existence, all else being equal (they might even be in favor of it, if there’s a value to having a diverse population of people).

But let’s take into account the subset of disabilities that are harmful in expectation. Does a utilitarian think that it would be better to bring someone into existence with no harmful condition than to bring someone into existence with a harmful condition, all else being equal? I’m not interested in being deceptive here: I think that the answer is yes. But the strength of the reasons that we have for bringing people into existence that don’t have harmful conditions requires that all else is equal (which it often isn’t) and often they are fairly weak. For example, if the condition is not very harmful or we can easily make a person with the condition just as well off as someone without the harmful condition, then there’s very little reason to prefer to bring into existence the latter over the former. Trivial reasons like this are easily outweighed by other considerations.

It’s also worth noting that utilitarianism doesn’t distinguish between harmful disabilities and more mundane properties when it comes to questions like this. Suppose you ask: all else being equal, should we bring into existence an agent who has a 10% chance of having a headache on their 32nd birthday or an agent who has a 9% chance of having a headache on their 32nd birthday? The utilitarian will say: all else being equal, it’s better to bring into existence the person with the 9% chance of having the headache. But they will also point out that it doesn’t make that much of a difference, and is a consideration that can be easily outweighed in real world scenarios.

To clarify: utilitarianism does not say that from behind the veil of ignorance (i.e. if we imagine who to bring into being) it’s always better to bring into existence a non-disabled person Jane instead of a disabled person Bob. But it will usually say that it is better, all else being equal, to bring into existence Bob without some harmful condition than it is to bring into existence Bob with some harmful condition. 

Things are a bit more complicated when it comes to very harmful conditions that are essential to someone’s being (i.e. we cannot bring into existence this person without bringing into existence someone with a very harmful condition). To take an extreme example, imagine that we know that someone with gene X will be born with a condition that causes them to have a short life that is full of suffering before they die at a young age: they are guaranteed to have a life that is not worth living. And since it is part of their genetics, we cannot remove this condition without turning them into a different person. If we are selecting between embryos for implantation, should we remove those with gene X if we can? Utilitarians will almost certainly say yes. This is analogous to thinking that ‘cure’ rather than ‘assist’ in cases where ‘assist’ is simply not viable. Some disability activists may disagree with this.

On one extreme, you might think that we should be completely indifferent about the possible people that we bring into existence in the future: that we should not care if we bring into existence people who are in extreme agony rather than people who experience normal levels of pain. On the other extreme, you might think that we should have a strong preference for bringing into existence only people who don’t have any harmful conditions. I think that many would agree that neither position is all that plausible, but where to draw that line is the point of disagreement between disability activists and utilitarians.

(4) Utilitarians support euthanizing disabled people

Utilitarians often defend voluntary euthanasia in cases where someone doesn’t have a life worth living. A lot of people don’t actually find this position so implausible in extreme cases involving an adult with a condition that cannot be made better, and who has gone through various medical assessments to establish this. Voluntary euthanasia is still controversial in these cases, since the person could still get better, or we might find a way of alleviating their suffering. But this doesn’t seem to be the point of contention with disability activists, since utilitarians are not singling out disabled people here: the view is just that suicide can be rational in extreme cases (i.e. cases that involve extreme suffering), and that in such cases we should not prevent people from ending their own life.

The cases that are usually discussed in the debate between disability activists and utilitarians are ones that involve people who cannot consent. For example, we can imagine that a child is born with a condition that causes extreme pain and who will die within a certain period of time, but who will, between now and then, suffer terribly. What should we do in such a case? I think that if we had the option of putting the child into a medically induced coma between the time that we realize this and the time of their death, we would not be doing something wrong. In fact, to leave them in agony seems very cruel to me. But I’m also aware that putting a child into this coma is tantamount to death, since it robs them of conscious experience from that time on. Utilitarians are probably divided on this issue. On the one hand, extending suffering needlessly seems cruel. On the other hand, euthanasia is a dangerous tool if abused, and we might want to avoid sanctioning it even in these extreme cases. These are the very cases and considerations that utilitarians discuss.

But this is all very different from the discussion you might think was going on if you just saw the claim ‘utilitarians support euthanizing disabled people’. This claim is simply not true, and if I thought it were true then it would be a strong reason to reject utilitarianism. Utilitarianism values human life and happiness. If someone has a life ‘worth living’ (roughly: the person would prefer to keep living than to die), then utilitarians want to preserve that person’s life. And if someone has a life that is not worth living (roughly: the person would rather die than continue living), then utilitarians would want to bring that life up to the point that it is worth living, if doing so is possible. The truly difficult cases arise when a life cannot be brought up to this point and wishes to die (voluntary euthanasia) or when their life cannot be brought up to this point and cannot consent to euthanasia (the child in a coma case). These are awful cases to have to consider, but the view that euthanasia may be morally justifiable in either or both cases is not morally repugnant, and certainly cannot be equated with the false claim that utilitarianism would support euthanizing people with disabilities. I can hardly believe I need to say this, but there it is.

(5) Utilitarians think that the lives of disabled people are less valuable

Most utilitarians are act utilitarians, in that they think that we should morally evaluate the actions available to us by how much welfare or suffering they cause. But we can look at how the moral view would evaluate things other than actions: e.g. how it would assess the value of a chair, or a nation, or a person. A person’s direct value would be how much welfare they have: that’s what got us the view that it was better to bring about the person with the 9% chance of a headache than the person with a 10% chance of a headache. A person’s indirect value would be how much welfare they create in others: e.g., a great author has positive indirect value, while a mass murderer has negative indirect value.

I do think that it’s a bit weird to apply this moral evaluation to people. If we do, then we end up saying that even though people are equally value as vessels and creators of welfare (i.e., we don’t care about their qualities other than this), the total ‘value’ of a person can vary with their personal levels of welfare and their indirect impact on welfare. Whether, by these lights, a disabled person is less ‘valuable’ than a non-disabled person is going to vary from case to case. Having any harmful condition is going to reduce one’s direct value. For example, I stubbed my toe last night and thereby reduced my direct utilitarian value. Any illness I have also slightly decreases that value. A harmful condition, including those caused by or related to disabilities, will decrease one’s direct value. That’s because the condition is harmful and not because the person has a disability. The class of people who have harmful conditions will have less valuable lives according to the utilitarian, but so will the class of people who stubbed their toe yesterday, or the class of people who’ve had a bad week at work.

The indirect value that people have is also going to vary a lot, depending on what one does with one’s life (e.g. becoming a great author or becoming a mass murderer). Utilitarianism doesn’t say that the lives of disabled people are less valuable, but it does say that if we hold fixed the indirect value that people have, the lives of people with any harmful condition (e.g. a stubbed toe) are producing less direct value than the same life without that harmful condition. But we should be careful not to conclude too much from this. There are strong moral reasons to adopt a norm of never discriminating between people on the basis of their direct or indirect value in all but extreme cases. It can be easy to forget this if we only discuss the kind of idealized fictional cases that find their way into philosophy papers.

I think that a large problem here is that there’s ambiguity in what we mean by the ‘value’ of a life. On the one hand, we can mean ‘how much value this life contains and produces’, as discussed above. But when we discuss the value of a life, we often care more about things like their welfare being treated as equally valuable (which utilitarianism advocates), or people being given fair treatment in accordance with their value as people. And utilitarianism does not imply that if a life contains more welfare then it is deserving of greater resources or better treatment. If anything, utilitarians seem to consistently advocate giving resources to those with lower levels of welfare in order to improve their lives, and not to those whose lives contain ‘more value’ i.e. those who already have sufficiently high levels of welfare. 

Conclusions

I do think there are some genuine disagreements between utilitarians and disability activists. I think that disability activists probably value diversity as an intrinsic good while utilitarians do not, and that this has some knock-on effects for the views that each of them have when it comes to ‘edge cases’ like when euthanasia or embryo selection are justified. I also think that utilitarians have been needlessly careless in their discussion of disability in the past, but that this is improving. You might still think that utilitarianism gets things wrong on some of the issues I’ve discussed above. My main goal hasn’t been to defend these utilitarian positions, but to show that the points on which utilitarians and disability activists disagree are points that well-intended and reasonable people can disagree about.

3 thoughts on “Utilitarians and disability activists: what are the genuine disagreements?

  1. Thanks for this thoughtful and nuanced write-up. I appreciate the amount of care and attention you seem to have paid to criticisms of how utilitarians (and many, many other philosophers and bioethicists) have talked about disabilities, how they interact with welfare, and how society should grapple with disability discrimination. I have some thoughts, primarily about language and framing, and some of which are fairly small, but which I think are important to be attentive to in any case.

    First, on your opening paragraphs, I think that some disability activists are going to say that they aren’t so interested in having people who have a “desire to help” people with disabilities, but instead merely want us to stop oppressing them. This is only important because of a) the way we’ve classically (and harmfully) talked about disabilities – as being primarily a personal tragedy that can be overcome, rather than being primarily a group harm imposed by society – and b) the way we’ve often infantilized people with disabilities and stripped away their agency to shape their lives in the way they want them to go (see: institutionalization, nursing homes, involuntary sterilization, and broader stigma effects). While I really doubt you meant it this way at all, painting people with disabilities as individuals to be helped rather than individuals who we need to stop oppressing might contribute to the tendency to see people with disabilities as passive recipients of beneficence from nondisabled people, rather than seeing them as political agents who we should be in solidarity with against oppression. Of course, there are important differences between the (e.g.) American case and the international case you describe, but it makes sense to address our language to the context we find ourselves in.

    Second, lots of disability activists are worried about the medicalization of disability, in part for some of the reasons expressed above, and in part because it’s just kind of odd to think of certain disabilities as health conditions. It seems like someone who has lost both of their legs can be perfectly healthy. For this reason, we might be a bit more hesitant to describe disabilities as “conditions”, since that has a medical connotation.

    In the same vein (and Elizabeth Barnes makes this point well), I wonder if we should talk about a disability as being “harmful” if people with that disability are only worse-off because of social discrimination? It would seem odd and somewhat problematic if we started suggesting that it is harmful to be Latinx. What’s harmful is the oppressors who are imposing harms on Latinx people, not the social category itself. While I understand that we can create a context and a counterfactual sense of “harm” such that this might be a felicitous thing to say, describing disabilities or being Latinx as harmful seems to implicate that it is the disability itself, or the Latin American descent itself, that is causing the harm, when it in fact seems like these conditions are not causing the harm in any ordinary sense of “cause”. And more than this being a counter-intuitive way to talk about social identities, it might be politically disadvantageous to talk about them this way when we’re worried that thinking about disabilities in this way, as an intrinsically harmful medical condition, is part of what is creating social stigma in the first place.

    On your discussion of (a)-(d), the values relevant to our deciding whether to ‘cure’ or ‘assist’ the patient: I think that many disability activists would be uncomfortable with this discussion not primarily because these are the wrong values to take into account in a decision like this, but because our society is strongly prone to take (a) and (b) as the most relevant factors in intervention selection when it comes to people with disabilities, whereas we are much more open to taking (c) and (d) into account in the non-disability case. We’re (wrongly) prone to seeing people with disabilities as lacking agency and epistemic authority about the value of their own lives, and we’re also (wrongly) prone to seeing disabilities as valueless or of negative value for diversity, while at the same time viewing other social and cultural identities as being valuable. The latter seems to stem from a prejudicial perspective that takes the lives of people with disabilities as lacking richness and their own distinctive beauty. Moreover, American society is much more prone to viewing disabilities as something to be ‘cured’ than we should be, which is problematic for all of the above reasons and because of our dark history of eugenics and genocide of people with disabilities. I think all of these factors make disability activists (rightly) skeptical of this kind of conversation, because they see it as only possibly going badly for them. I think that even if we can still have this kind of conversation, we should be very aggressive about pointing out the disparities in how we talk about and treat people with disabilities and other people in the health care context. And I think that a lot of these considerations are going to be the same considerations that will make disability activists skeptical of abstract conversations about whether we should add people with disabilities to the world (which is easy to read as, Should we have disabled people?, and it’s easy to see why this kind of a question would rightly raise extreme skepticism given our context).

    (Also one tip you can take or leave: when I write about disability and well-being I try to use a lot of non-medical examples to show how certain theories do or do not treat disability like non-medical factors correlated with well-being as well as other bases of oppression. For example, you might include divorce and bereavement as social factors negatively correlated with well-being that we could take into account in population ethics and health care resource allocation.)

    1. Could you give an example of something that’s a disability but doesn’t make a person worse-off except because of social discrimination? I guess I wouldn’t think of such a thing as being a disability, but maybe I’m not thinking of it right because I can’t think of an example.
      The closest example I can think of is where something causes inconveniences but also creates benefits of a tight-knit community (e.g. deafness), where one might find the benefits to outweigh the problems. Is that the kind of thing you mean?

      1. I think some kinds of autism are in this category: there are lots of autistic people who would be fine and happy if people would stop being mean to them.

        I think a lot of disability rights people also consider the lack of accommodations/accessibility to be an example of societal oppression, in which case more things would count: for instance, a person in a wheelchair who has an equally good quality of life assuming that all the places they want to go are wheelchair-accessible, etc.

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