For those who don’t know, I’m getting ready to go to WisCon 37 later this month. WisCon is a great convention not just because most of my friends are there but because the programming is always fascinating, as are the talks around the dinner table/in the hallway/ambling around in Madison. As I did last year, I’m appearing on a couple of panels and I’ll be attending several as well, and I’m starting to pull together notes for panels I’m attending as well as presenting on. I thought I shouldn’t selfishly keep those notes to myself, so I’m writing some of them up here—WisCon folks, consider this a preview. Folks who can’t make it this year (or those struck with the dreaded conflicting panel dilemma), consider this a taste.
One of the panels proposed, but later dropped, this year focused on some bioethics issues that are particularly close to my area of interest: the social exertion of ownership over disabled people through their medical devices, assistive devices, and other technologies they rely upon for survival. Perhaps most notably explored in pop culture in the form of Repo Man, this issue is one with very real-world implications that are already starting to happen, and I was excited to see a panel about the subject to give us an opportunity to talk about them in a space dedicated to challenging social norms and exploding attitudes.
Notably, when the panel descriptions were first released, this panel was named and described somewhat differently, and a WisCon attendee expressed considerable concerns with the language in the panel title and description, arguing that it served to reinforce the very attitudes it was supposed to be contradicting. With some reworking of the language and a discussion about what was really meant with the panel, it was brought to a more holistic, and accurate, place that got me thinking about the issue in larger terms.
The very fact that there was controversy over the panel in its original form illustrates how sensitive, and heated, this issue is for many disabled people. This cuts close to home because it’s about as close to home as you can get. We live in a world where the bodies of disabled people are presumed to be public property, and the thought that someone’s body could be corporatised or controlled by a company is terrifying. No small wonder that concerns were expressed when the original panel description effectively asked if it was possible to ‘own’ another person; because it shouldn’t be, but for the outside world, it still appears to be an open question.
Medical devices are a huge industry in the US and worldwide. The amount of money invested in them is truly stupendous, and most end-consumer devices are extremely expensive. Manufacturers curate complex relationships with surgeons and other medical professionals to encourage them to adopt specific systems and techniques, playing out a battle on and in the bodies of patients, and creating a situation where the best needs of patients often take second-place to profits and incentives. This is a dangerous situation, and one that bioethicists are already exploring when it comes to issues like doctors accepting compensation or perks for using or promoting specific devices; when a doctor is given a free trip to Hawaii for a ‘seminar’ to learn about how to use a medical device, that doctor is probably going to start recommending that device to patients.
But what about the devices themselves, once implanted? Most are not user-serviceable, which one might argue is a good thing (they require medical training to be adjusted, surely?) but might not necessarily be. Why shouldn’t patients be able to upgrade software? Why shouldn’t patients be allowed to work directly on their own prosthetic devices, electronic pain management equipment, and other implanted medical devices? And should companies be allowed to take such devices away if patients fail to pay their bills? This shouldn’t even be a question, but it is, and it’s important to talk about why, why it is that disabled people are so devalued in this society that their bodies are considered consignable to the scrap heap while people are still living.
What about patients who use mobility aids like wheelchairs and canes? These devices are extensions of a patient’s body, and as such shouldn’t be taken from patients either, but again, people exert ownership over them. Not just in the sense as assets (can you imagine viewing a liver or a kidney as an asset?) but also in the sense of ‘property’ that can be freely touched and used by anyone in society. Most wheelchair users can report the familiar and jaw-clenching experience of having their chairs touched, grabbed, pushed, or pulled by people around them without warning, and in some cases, this has actually caused damage to the chair. Rather than being apologetic for violating someone’s personal space, the perpetrator is offended that the victim is upset.
This, too, speaks to the idea that disabled bodies are public property. These notions about disabled people and their bodies, and the tools they need to live, are widespread and have serious implications when it comes to making policy, making medical decisions, and just plain etiquette. This is a brave new world of bioethics we live in, and it’s one in which we need to be prepared to face some very peculiar choices and situations, while defending the fundamental humanity of all human beings. If someone is a human being, that person has a right to individual freedom, not to be owned, fettered, or impinged upon by other people, and that extends to their whole bodies.
Even if their bodies aren’t made of 100% human skin and bone.