These past few weeks I have had the pleasure of having a philosophical back and forth with someone with whom I went to grad school in philosophy. He is a political philosopher who has no background in disability studies, but (I gather) a burgeoning interest in disability.
For those who don’t know, I have a rather strong personal and professional interest in disability. Much of my freelance work is about disability, and my son, Edmund, has Cri du Chat syndrome.
Former Fellow Grad Student hasn’t quite said outright that we should not accommodate people with disabilities until they are as typically functioning as possible, but has said, more or less: capital isn’t free, some people with disabilities will suck up enormous resources and we can expect very little in the way of economic return for our investment.
I have heard this So Many Times. So I dashed off a quick reply to him, and I thought I’d post it, lightly edited, here. For your consideration:
An economic input/output calculus of “is this person’s utility really worth that much investment” is difficult, if not impossible, to make for the following reasons:
a) Disability accommodations don’t only help disabled people, and we tend only to discover this after we make accommodations. They make society as a whole more productive. Ramps, lifts, and elevators turn out to be very useful for people with strollers and wheeled luggage. Large signage with symbols also helps non-native speakers and distracted drivers. Automatic doors help people carrying lots of stuff. Redundant mutli-modal cueing (e.g. signs and announcements) help fewer get lost in large public spaces. A lamp that turns on with a gentle swipe or voice activation can be useful if I’m cooking and I have raw meat all over my hands. Many of us get disabled temporarily, and any one of us could be permanently disabled in a split second.
b) Likewise, things that initially are for other purposes have turned out to be powerful tools for disabled people. Edmund can’t talk with his mouth, but he can communicates using an iPad app that shows picture symbols. The iPad says the word he means. A few hundred bucks, and he has a working mouth. His speech isn’t chronologically typical but it’s functioning speech.
c) There is no reliable way to predict what disabled people will do. At Edmund’s birth we were told, based on MRIs, he would be blind, he would never notice objects in his environment, he would be mostly deaf. He would never walk or talk. So, he’s six. He walks with a walker, he just started standing by himself, doesn’t have vision or hearing problems that we know of, has the receptive language of a three-year-old, is able to (with iPad or sign language) put together 1-3 word sentences. At this point, I think there’s no reason to assume he won’t be doing some sort of productive economic work at some point in his life, especially given advances in technology and education. Yet it was suggested to me by more than one doctor that we sign a DNR. Think of it this way. We have only been educating all disabled people for about 40 years. We have very little long term data on how to educate disabled people, but some is starting to come in. The more that comes in, the better we will get at it, and the cheaper it will become. Also, the more disabled people we educate, the cheaper it will become. Given unanticipated changes in technology, there’s really no telling what he’ll be able to do. Maybe he’ll bag groceries for a few hours a week with assistance. I think it’s perfectly possible — actually more plausible — he’ll do something significantly more independent than that. But he would have been written off. Would have been a shame.
d) If we design for universal access, then “accommodations” are a hell of a lot cheaper and costs come down.
e) Even in my son’s lifetime, the costs of disability equipment have come way down (the voice output device that people used before iPads, for example, was thousands of dollars). You can’t predict accurately into the future what someone will cost, so it is cruel to withhold investment.
I just see no reason not to invest in any disabled person to some sort of basic opportunity level. There might also be something to be said for a society that doesn’t only invest in those who might expect to return an investment economically, but invest in those who return the investment non-economically. Say, in making or society a more moral, beautiful, friendly, kind one.
“Former Fellow Grad Student hasn’t quite said outright that we should not accommodate people with disabilities until they are as typically functioning as possible, but has said, more or less: capital isn’t free, some people with disabilities will suck up enormous resources and we can expect very little in the way of economic return for our investment.”
I find this very sad, although I must confess I don’t find it very surprising. In fact, your college’s argument reflects how we tend to view the DD community in this country. His approach utterly dehumanizes them, casting them not in the role of a member of the community so much as some kind of widget, to be measured on society’s financial balance sheet. In a way that he doesn’t feel the need to do with, let’s just say, philosophy professors.
Also, to your larger point,
while your arguments show that we have reason to devote considerable effort into ensuring that the disabled have significant opportunities to participate in society, you don’t show that we have to accommodate the disabled until they are as typically functioning as possible. Certainly, your arguments show that tradeoffs between the wellbeing of the disabled and the rest of us are not as pervasive or large as we are prone to thinking (and thus we should devote considerably more resources to giving them opportunities), you haven’t shown that there are never any tradeoffs. Moreover, to be charitable* to your fellow grad student, at least as you have reported it, nothing he says denies that we ought to do more (or perhaps even a lot more) for the disabled than we currently do.
*I don’t know your fellow grad student. So for all I know, he may actually think that we should expose the disabled on the mountaintop. Based on your prior acquaintance with him, what does he actually believe?
I wonder if there is any political philosophical perspective built around the equitable distribution of resources (which is to say, any property materialist political philosophy) that won’t ultimately arrive at some amount of exclusion for people with disabilities. The reasoning is simple: resources are limited enough that, if we use extra on one group, we will necessarily be using less another (or others). And from this perspective, arguments from beauty, kindness, friendless, and aggregate morality will be, if not completely unusable because they would have to privilege one group over another (in essence, we should divert resources from that group to people with disabilities because investing in people with disabilities produces a more moral, friendly, kind, etc. society than investing in that other group), require a whole lot of extra work to show that, yes, because of something unique about people with disabilities (or their relationship(s) to the rest of society), investing in them instead of some other group really is the kinder, friendlier, more beautiful, more moral option. Your friend understandably, being the materialist he clearly is, would demand much from you in order to get to the point to which you are trying to get him. It’s much more straightforward and basically egalitarian to use objective, measurable material criteria, like return on investment or cost-benefit or whatever.
And to stave off the objection suggested by your reply to Murali, from the materialist’s perspective, there is are very important differences between basing distribution on race and basing it on disability. Differences in opportunity based on race, religion, gender, and most other social categories are largely if not entirely based on inequalities born of discrimination, and a shift in the distribution of resources can be used to remedy this, and can, by doing so, result in vast improvements on the sorts of metrics (ROI, cost-benefit, and the like) that the materialist naturally prefers. There are, without doubt, discrimination-born inequalities for people with disabilities, too, and to the extent that a redistribution of resources can rectify this in materialist efficient ways (that is, where efficiency is measured by those material metrics), I assume your friend would be all for it (though he’s the expert, so it’s possible I’m missing a premise or two that he is not, and my assumption is therefore mistaken). However, other differences that require some changes in the distribution of resources so that resources are taken from others and given to people with disabilities are inherent to the nature of disability in a materialist system, and therefore almost by definition inefficient, and those are, again, difficult to justify to a materialist.
None of this is meant to suggest that I agree with your friend; I do not, as my own basic value system is not a materialist one. But I see where he’s coming from, and I see the hurdles he sees in your way. And I doubt they’re surmountable, without a radical reformulation ala (in Anglophone political philosophy) Young or Nussbaum or the like.
[Added: If none of this makes sense, or if it is filled with typos, I apologize. I’m writing on a phone while watching soccer while sore and slightly hung over after 4 straight days of shows from noon to the middle of the night… with free booze.]
Sorry, distracted, cooking. I actually agree, you can’t totally Social Model away severe cog disability. But. Due to other things I point out, you can’t price out future education costs nor future degree of disability.
Look at CRISPR alone.
Elizabeth,
Unless it flew over my head, I don’t see you discuss the impact of accomodating the disabled on their loved ones. If E were instituionalized or left on a mountaintop, that would almost surely have a detrimental impact on you and Mr. P. Even if he remained at home but society failed to accomodate, you’d be left hoisting E over raised curbs and whatnot, all of which would create real costs to you and society. Some of that is hard to measure (e.g., How do you determine the cost of heartache? The impact of heartache on productivity?) but it is no less real.
moral, beautiful, friendly, kind
These terms all seem somewhat orthogonal to economic discussions.
This seems to be a recipe for people wanting to focus on economics as being a/immoral, ugly, unfriendly, and cruel.
And, of course, for those who wish to focus on the moral, beautiful, friendly, and kind as ignoring the economics.