Joseph Mastron, PhD 🆓✅🏳️‍🌈
Okay so I'm at the society for neuroscience conference, and next to our booth is a whiteboard wall with the prompt "what's your vision for the future on neurotech?" There are a lot of responses ranging from silly to serious, but one theme stood out more than others, exemplified by this image. At first, it seems like a great goal. But let's dig deeper. #sfn2022
Nov 16, 2022 at 5:08pmWeb
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Broken down at face value, there are several statements made here. First: the goal is to help everyone live a normal life. Second: the goal is no pain/no suffering. Taken together, these reveal an underlying belief: that there is a normal, standard life, and this life has no room for pain or suffering. Or, read a different way, people who live with pain are not normal, and need to be returned to that state.
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Phrased this way, it is clear that they're not thinking of improving quality of life or quality of care for people with chronic pain. They're not thinking of better ways to accommodate them. They're thinking that the best future is one where neurotech *eliminates* pain and suffering. The only way to do this is to eliminate those who live with chronic pain. Extreme? Yes! Does the original writer believe this? Probably not
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
But that's the end conclusion of the philosophy behind the words they wrote. That people are standardized, that there is one normal, that people with disability or chronic pain are somehow deviating from this normal, and therefore the goal should be to return them to this normal. That's a very scary philosophy. If the goal is to make everyone "normal", what about those who do not or cannot conform?
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Other responses touch on this same theme: "restoration for all" "to cure blindness" etc. Again, these seem like reasonable goals but they really aren't paying attention to the disability community's discourse. Restoration language implies being less-than until restored. Curing blindness impliess that the blind aren't good enough until "cured." Again, the end goals aren't bad. But they tap into a bad philosophy.
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Other people seem to agree with me, based on the sheer number of "improve quality of life" "improve quality of care" "make a more accessible world" responses. This is the goal, what we should strive for. Not "normal," not a return or restoration back to the "good" state of an abled person from the "bad" state of a disabled person. Instead of "no pain" how about "pain reduction, designing accessibility around that"
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Instead of "cure blindness" how about "improve quality of life for blind people, from alt text to screen readers to safe crosswalks and walkable cities." Instead of "help everyone live what I have defined as a normal life" how about "help make spaces and technologies accessible to everyone so that no one is made to feel abnormal"? The goal is to be better to other people, not to make them normal.
Show threadJoseph Mastron, PhD 🆓✅🏳️‍🌈Nov 16, 2022
Sorry for the rant, this has bothered me all week.