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.