Monthly Archives: July 2011

Newly-diagnosed parents

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Posted by maxporter on July 25, 2011 – 12:02 AM
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Every now and then, strangers on the street strike up a conversation with me because they’ve noticed that I have a cochlear implant. A good number are parents who are thinking about getting cochlear implants for their kids. Most of the conversations that I have with these parents take the same form: “I recently found out that my child was deaf, and I was thinking of getting him/her a cochlear implant. Can you tell me about your experiences?” To be completely honest, talking with the parents make me really uncomfortable.

My father coined a term, “newly-diagnosed parents,” to refer to hearing parents who know nothing about Deaf culture. They’ve suddenly been thrust into this alien situation and are afraid of the unknown. Because a large portion of deaf people – some estimate 90% – have hearing parents, this is a very common situation.

When newly-diagnosed parents hear about these gadgets that are widely hailed as a miracle bionic that turns deaf people into hearing people, they jump upon the chance to give their child a ‘normal’ life. We can talk to our kid! Our kid won’t be an outcast in school/society! Our kid will be able to get good grades, then get into a good school, then get a good job, all thanks to the cochlear implant!

But the thing is, the reality is a lot more complex than that. Cochlear implants do not turn deaf people into hearing people, period. They simply provide some auditory input – compared to what hearing people have, it’s a rough sketch of the auditory world. It’s up to the wearer’s mind to connect those sounds into something more meaningful. Even assuming that a kid is a candidate for a cochlear implant on a physical basis – for instance, kids with damage to their auditory nerve are not a candidate for a cochlear implant – there’s no telling if a kid will take to it or not. They may end up becoming a Deaf separatist anyway.1

What bothers me is the fact that newly diagnosed parents seem to think that they need their child to be “hearing” to be able to relate to their child. If I sit down and think about it, it’s actually pretty upsetting because it carries the implication that (A) deafness is inherently broken and (B) language is based upon speech.

Sometimes I wonder about the messages that kids who are implanted young receive. You are broken; we need to fix this aspect of you. You need a cochlear implant to talk to people, including your own parents.2 And so forth. Like I said, a cochlear implant does not turn a deaf kid into a hearing kid. If a kid is bombarded from an early age with messages that deafness is inherently bad, wouldn’t that lead to all sorts of psychological issues? In short, the well-meaning parents may be signing up their kids for therapy.

Personally, I’m grateful that I was given the choice to get my cochlear implant. My parents gave me the agency to choose to use this tool instead of sending the message, “You are broken; we need to fix you with an operation.” I see my cochlear implant as a tool that helps me to relate with hearing people. Nothing more than that. At the end of the day, I’m still deaf. Being deaf isn’t inherently disabling in and of itself; being deaf in a hearing world that refuses to accept deaf people is disabling. I think that this is an important distinction, one that a lot of hearing people don’t grasp. If a hearing parent doesn’t grasp the realities of being a minority in this world, where does that leave the kid?

So, the reason that I have a problem with newly diagnosed parents who strike up a conversation with me on the street is because a lot of them come from a place of desperation. They want a magical fix to their kid’s “problem.” It just is not that simple and, in the end, I have no idea how to convey the fact that the issue of getting a cochlear implant is a complicated one. The worst part is, I have no idea how the kid feels about all this.

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  1. Which, I want to be clear, is not necessarily a bad thing. But I doubt that hearing parents hope that their kid will become one. [↩]
  2. Although my own parents know manual communication, they sometimes refuse to talk to me until I have put on my cochlear implant. I can’t describe how weird this is; another post for another day. [↩]
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Reggae music in the backcountry

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Posted by maxporter on July 12, 2011 – 3:11 PM
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When I was fifteen years old, I went on a week-long backpacking trip with a Deaf camp. It was the first time I’d ever done such a long camping trip. I was completely deaf the whole time: I had left my cochlear implant at home because I didn’t need it and because I didn’t want it to get damaged or lost.

It was a fairly grueling route, even for our experienced backpacking guides who frequently tackled challenging hikes and worked out at gyms. I don’t remember the exact details anymore, but we climbed up so far that we reached snow – in July – and went through two or three mountain passes. There was a fair amount of steep terrain, and we would hike for at least six hours per day. So, as you can imagine, we were extremely tired by the end of the trip.

On the second-to-final day, we looked at the map and at our proposed itinerary. It was all gentle downhill or flat terrain, and we were supposed to split up the final six miles of the trip over the course of two days. Despite our exhaustion, we decided that we could tackle the entire thing in one day.

Summoning up our willpower and stamina, we did it! – we reached the campground before anybody else. I can’t describe how amazing that feeling was; the high of knowing that we had finished the trip at a better-than-average pace.

We set up camp at a car-camping campground, which was the epitome of luxury after roughing it for nearly a week – we were able to pitch a tent on a flat surface clear of sharp rocks! – we got into the camp van. Our guides, being experienced hikers, knew that we were in a prime location to find natural hot springs and that few things feel better than a soak in hot springs after a long trip like this.

One guide turned around and said, “We’re not really supposed to do this. So, don’t tell the camp director about this. She’s a boring woman anyway.” We all laughed and agreed.

Then she turned around and began driving the camp van as if it were an off-road SUV vehicle, bouncing in and out of ditches. Soon, she turned on the music player and it began blasting reggae music.

The music was so loud that I could feel the vibrations all the way in the backseat of the camp van. Exhausted after days of walking up and down mountains with 40lb on my back, I sunk into the carseat and let the music wash over me.

We did find hot springs off the side of the road in a random ditch and shared them with a random Indian family. Then we went back to the campground and slept deeply.

That day, especially the time in the camp van during which reggae music soothed my sore muscles, remains one of the most cherished memories of my life.

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The reason I’m sharing this is because I was thinking about how some people tie memories of events with music. Specifically, I was thinking about this post I wrote a while back about the association I made between David Bowie’s song Space Oddity and my father.

It then occurred to me that I have earlier memories of music than that. And, interestingly, I was completely deaf when the event happened.

I have to admit, the presence of reggae music definitely improved that already wonderful day.

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The Internet as a Mirror, Pt. 3

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Posted by maxporter on July 6, 2011 – 12:02 AM
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As the Internet has become more and more widespread, another thing that I have noticed is the fact that so many people talk about how much of a time drain it is. Many complain, for example, that Facebook has taken over their lives and has forever ruined social interaction.

I think that there is something deeper to the sense that one is wasting time online. After all, if people were truly happy with the way that they use the Internet, why would they complain about spending so much time on what they enjoy?

I reiterate: it is not about the technology; it is about human nature. People will always find ways to waste their time, with or without the Internet. Likewise, communication will always change with new technology. When I hear people complaining about how the Internet has ruined their life, I can only think that they need to reevaluate themselves rather than blaming the Internet. Change is the only constant; deal with it.

As much as I’ve praised the Internet, I admit that I do have concerns with it. Personally, one concern that I have with the Internet is that it can lead to isolation. It is wonderful to have an online space in which one can express his or her true self, but what if that’s the only space to do that? I personally think that it can be alienating to feel like that none of your meatspace friends could possibly accept you like your online friends do. Maybe that is simply the extrovert in me talking; I love face-to-face interaction.

I have to conclude, however, that this is simply another facet of human nature that has existed since before the Internet was around. When I read about, for example, gay people who grew up in the backwoods without the Internet, I’ve noticed that they sought escape and anonymity in other ways: becoming a bookworm, driving hours to a gay bar where nobody will know their identity, cruising in parks.

So, like I said, the Internet does not create or cure problems in and of itself. It simply amplifies human nature.

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The Internet as a Mirror, Pt. 2

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Posted by maxporter on July 5, 2011 – 7:56 PM
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OK, I wrote this series a while ago, and it’s been sitting on my computer for a while. I’m sick of editing it. I still can’t quite get my ideas across the way that I want to, but I’m just gonna accept its imperfect nature and publish this installation plus a third one.

The Internet as a Mirror, Pt. 2

Anonymity is useful. It is not appropriate in every single situation, but I believe that it is important in that it gives us a safe space to form our identities and gives us courage to articulate our true selves in real life. It’s a space to fail with relatively few consequences.1

For me, anonymity was really important when I was growing up as a queer teenager. When I was questioning my identity, I certainly didn’t want my family to know. What if it turned out to be a phase? So I adopted an online handle and talked to other people who had adopted online handles. Needless to say, it wasn’t a phase. I can’t state enough how important the Internet was in my emotional and social development; how long would it have taken me to come out if I didn’t have that freedom to experiment?

To be sure, the Internet has exposed some ugly sides of human nature. Much has been made, for example, of people who drive others to death. But I strongly believe that this is not a reflection of the technology itself; it is a mirror of human nature.

Two examples: One of the major problems with anonymity, of course, is that one can con others. I have read so many stories about people pretending to, for example, have a terminal illness in order to solicit donations. This is terrible, sure, but I think that what we have to remember is the fact that people have probably been conning each other since the beginning of civilization. Technology itself is not to blame here; human nature is. Another issue is the hivemind that sometimes arises when a large number of anonymous people congregate in one space. Much has been made, for example, of people who organize DDOS attacks on major corporations. But, again, I think that this is more a reflection of human nature than technology. The mob mentality has been around since the beginning of time, and a certain portion of the population is always going to try to find a way to outsmart “the system” in ways that are sometimes destructive.

I’m sick of reading all these stories about how the Internet has ruined our lives and has caused all these psychological problems and so forth. I think it’s time to take on ownership for the problems that we ourselves cause due to human nature, and it’s time to focus on the positive aspect of the Internet.

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  1. For more on this point, I highly recommend watching this TED talk about anonymous spaces. [↩]
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