Final of a three part series. Find parts one and two.
Now that we understand some of the history behind the debate on Cochlear implants, let’s look at how it relates to other groups.
“Because they don’t consider themselves as patients with broken auditory equipment that needs fixing. They don’t see themselves in terms of loss or deficit. They don’t see themselves as candidates for head surgery. They see themselves as whole, just as they are. They live full, rich, rewarding lives as Deaf people. They consider CI surgery a violently extreme intrusion into their bodies. The message they’re getting from the medical establishment is “Society isn’t comfortable with your deafness problem, so let’s fix you.”
While we might like to pretend we have more sensitivity to people than we used to (imperialism is about taking over new geographic areas and asserting your cultural values – it’s kind of the history of the demographic of this blog does), let’s look at our own shores (for some readers) in our own times (I assume for all readers). Members of [Native {American] Indian} groups decide, on an ongoing basis, whether or not to stay on specified land with their children. If they stay, they effectively remove later opportunities within larger culture in exchange for imparting the values of the pocket culture.
I think we can all agree that a more diverse population is a more robust one (if you don’t, I don’t know what you’re doing here). But at what level of the fractal do we take this? Does an individual need to have many abilities (specialization is for insects), and/or contribute to a diverse locale (like the city or town they belong to – mine is based on internet subgroups), and/or to a culture at large (the country or world)? (Insert side discussion about Simmel and the roles of people in towns versus in cities. Seriously one of my favorite sociologists).
Now, do you understand my fascination with peer- and self-rescue in humanitarian response? That we cannot simply swoop in to “save” people and then leave. While part of our culture is about running over other cultures, thinking ours is best, and that individual reasons will trump all these – these are just examples of cultural values. They change based on your context. And while it is absolutely imperative to reduce suffering in the world (both current and potential future), we must come to the table ready to listen.
There’s a nested, Simmel-based conversation here about self-segregation and how people often opt for that over fighting to diversify the next larger group to theirs. People who share your history, context, and dialect allow you a path to more complex exploration, but at the detriment of robustness in larger culture. This is not an either/or situation, however – it is possible to spend time with people who “get you” as well as doing outreach to groups. Let’s celebrate some serendipity.
Now – let’s sidestep and make this even more complex by adding on a layer of governmental support for “disabled” people (in quotes not because I don’t think some folk deserve assistance, but because it’s such a loaded and questionable term). If parents did not take the expensive (monetarily, culturally, medically) action to get their child into mainstream society, does the child or parent qualify for disability payments or other societal support systems? They would indeed have fewer paths open to them, despite the one they are on being useful to them as well as to society at large. Regardless of what choices an individual makes, it ties into larger culture. This is not even getting into making life-changing (not life-saving) operations on individuals who cannot meet the three requirements for opt-in surgery: of age, informed, consenting.
Of course the easy answer would be that we just optimize and adapt based on historical context, who is present, what they can do, and what needs doing; but why would we go for that path? While it is important to give each person the same potential to have a fulfilling life, that doesn’t necessarily mean enforcing the same starting point. An informed, mature conversation with all people affected by a policy is a good step in what I see as a better world.
More media:
Rebuilt
Charts and graphs
Remainders (things I think are important, but would have made this series even more unwieldy):
- While the hardware of cochlear implants can be installed, it is still a limited technology. And while the software may get better, the hardware is limited in updates as to what the engineers predicted the market to do, and by available processing power at time of install.
- Issues of who owns the hardware in your head, the information going through it, and the way that information is processes is a hot topic in the hacker community. I’d love to hear people’s takes on that within this context.
- The world as an API you can pull information from, regardless of how you choose to skin/interpret it. The functions we choose/are able to call, and the way that information is presented, have deep impact on how you perceive, and therefore live, your life.
- Anecdotal stories from people who have gone through (or not) whichever process are not enough to understand the cultural issues. People come up with the best story they can to explain how they got to where they are now – it’s an essential part of being happy, or at least of making sense of your world. We also misrepresent other people’s progress dependent on what we think needs to happen overall. I’m likely doing that even in these posts.