Cochlears and Culture : Some Extrapolation (3/3)

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.”

missing a source credit – please help.

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:
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.

Cochlears and Culture : History and Brains (2/3)

Second of a three-part series. Find part one here.

The Deaf Community is a somewhat new thing. The first documented Sign Language is about 500 years old (I’m so not going to get into sign before spoken language – I can only be so esoteric in even a three-part series). The first school, meaning a concentrated population, was around 1760. There is a fantastic RadioLab on language, including sign, that you should have checked out from the last entry. Without an established culture through which language (and other things) can be transmitted, people who are deaf, sans the Deaf Community, are left out in the cold. And without the basics of language to structure thought on, many contextual thought processes cannot be completed (“left of the blue wall”). Additionally, only after more complex ideas (like misdirection) filter into the group can people understand all parts of a story. EG, “Becky leaves a teddy bear under the bed. Timmy moves it into a chest while she is out of the room. When she comes back, where does she look?” Someone who hasn’t learned the sign for “lie” or “misdirection” would say “chest” because that’s where it is. Someone who has learned the word/symbol/sign for “misdirection” would say “under the bed” because that’s where Becky thinks it is.

With me so far? The point is that having a baseline of shared input/output methods leads to reduced difference in approach, normalizing a population. The result is what many call therapy – bringing individuals in a population to a shared standard. But should this be enforced on traits which define pocket and sub cultures? Before advances in science, they wouldn’t have learned the “normal” way of processing. Taken out of these cultures and definitions, individuals would not have gained this different way of processing. Their lives lend to cultural diversity.

A cochlear implant gives the ability to hear to a person by triggering receptors in their ear with electrical pulses. If a parent opts to not put their child through this risky and expensive process, they have passively removed the child’s ability to fully integrate with the world at large because the basic structure of the brain is different in such a way that a shared language is incredibly difficult to achieve. To the parent, it is often made to preserve the connection between child and family. If the implant is installed, the child is actively removed from their home life and neighbors. A rift is formed in each option. From a bird’s eye view, this choice to not install is made in order to preserve the pocket or sub culture.

Viewing and reading before the next entry:
Sound and Fury
Cochlear War

This series will be completed in an entry on Friday.

Cochlears and Culture : Some Context (1/3)

From the blog the image links to. Also includes a good interview.

This series is based on two conflicting assumptions that exist in the circles in which I run – one that non-mainstream culture (either opt-in subculture or historical/ethnic/geographic pocket culture) is worth preserving, and another that there is a universal standard of living which should be adhered to.

My dad’s side of the family is Irish Catholic, and I am a member of a vast family which proves it. A set of cousins have taken an active role in a Deaf Community in Illinois. One has married a lovely Deaf gentleman and is a principal at one of the Deaf-specific schools, the other two are instructors. The whole batch of them live on the same street with a collection of children, mostly adopted from other countries where deafness is considered to be too much of a defect to bother with those affected by it. My interactions with this tight-knit community have been warm, welcoming, and frank. Because of this, I was so immersed in the debate about cochlear implants that part of my honors thesis in college focused on it (Difference Between Therapy and Advancement in Medical Technology). In fact, it’s such a strong community that the D of Deaf is capitalized – it is an identity.

Disclaimer that I am not deaf nor Deaf, and while I represent things here as accurately as my studies and experience allow me, I may be completely wrong. Please notify me if you find anything disheartening or inaccurate here. My contact is available on the About section of this website.

Here is how the debate goes: a child is born and cannot hear. If a cochlear implant is installed early on, the child has a chance of learning the nuances of sound which will allow them to operate pretty “normally” in the world (at least in that regard) – most prominently, they will likely understand spoken language. However, that means they will not be a full participant of the Deaf community. If the parents are Deaf, it means there will be a deep difference between them.

It’s a fascinating moral dilemma – unlike other Birth Stigmas (not all stereotypes are negative, but all stigmas are), this one can be changed during a short window of time. The other two categories of stigma are Choice and Accident (the ABCs of discrimination!) – and what group a trait belongs to changes how the person associated with it is viewed by the culture they belong to. Another interesting example of a mis-perceived is religion – it seems like a choice stigma but is actually a birth stigma – deviation from childhood religion is not statistically significant. Some people might leave religion during early-mid life, but they return to the church if they have kids. The cochlear implant debate is a great example of how subcultures and pocket cultures are constantly barraged by the mainstream to not be the “Other” – to leave behind a trait which is stigmatized.

Your reading/listening before the next of the series (seriously, it will be hard to keep up without this context):
RadioLab episode on language and brains
A great short history