Monthly Archives: July 2010

Growing Up On the Internet

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Posted by maxporter on July 31, 2010 – 12:56 AM
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When I explain the role that the Internet played in my life, I usually say, “The first online community that I ever joined was a Lord of the Rings messageboard, even though I’ve never liked Tolkien in my life.” Contradictory, right? Well, let me explain.

In middle school, everybody I knew suddenly became absolutely obsessed with the first Lord of the Rings movie. For months on end, it was the only topic of conversation, and I do mean the only topic. As annoying as this would have been under normal circumstances, it was worse for me because I couldn’t participate in any of the discussions: the movie wasn’t subtitled, so I couldn’t go watch it. I’ve described in a previous entry how miserable I was throughout this whole affair.

Since I couldn’t watch the movie, I tried another angle: reading the series. I figured, “I love to read. All my friends are talking about the movie based upon this series. I’ll read it so that I can at least know who all these elves or dwarves or whatever are.” Well, as it turned out, those books were just too damn boring! Obviously, the only logical conclusion was that the movie must have been a million times more exciting than the books.

Thanks to this failed effort, I continued to feel like an outsider. But one day, everything changed when one of my best friends joined a Lord of the Rings messageboard and invited everybody else to do so as well.

Screenshot of Lord of the Rings forum from WayBack Machine
[Visual description: A messageboard with a blue background. Categories: General, The Books, The Movies. Red folders are depicted next to the subcategories.]

It was a tiny messageboard with approximately 75 registered users total. The whole atmosphere was super laid back – people liked Lord of the Rings, but they weren’t rabid fans by any means. Most people were there to chill and hang out. We talked about random things, like how cool the marquee HTML tag was or how hot Orlando Bloom was as Legolas. In short, it was the perfect place for a kid who wanted some way, no matter how superficial, to take part in this topic of discussion that had dominated every aspect of his friends’ lives for the past few months. But, as it turned out, it was more than that.

I continued to frequent this messageboard and other Tolkien-centric messageboards even after my friends finally tired of Lord of the Rings and moved onto other things. Why? One very simple reason: At long last, I had finally found a place where communication wasn’t a total chore!

Here’s the thing about a lot of Hearing people, especially when you’re going to a middle school full of them. They have a tendency to congregate in large groups where it becomes difficult to lipread anybody – worse, they won’t repeat anything because “it’s not important.”

On the Internet, that never was the case: someone typed something and I instantly understood what they said. Conversely, people didn’t have to ask me to repeat myself a million times because it didn’t matter how well I spoke: I typed something, they understood it.

And that is that the story of how I ended up making my first online friends on a Lord of the Rings messageboard even though I’ve never liked Lord of the Rings.

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Evidence

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Posted by maxporter on July 29, 2010 – 4:38 PM
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During the summer of 1998, I chafed at not being able to partake in my favorite summertime activity – swimming. I’ve been told that the recovery for the surgery is much simpler nowadays, but back then, I wasn’t allowed to immerse my head in water for about three months. We cleaned the scar site daily with hydroxide peroxide. After surgery, I came home from the hospital with my head wrapped up in a big bulky bandage. It hurt to put on a T-shirt. A few months later, a car door slammed into the side of my head – boom, an explosion of excruciating pain.

My mother says something.
“What, mom?”
She glances at the side of my head, then rolls her eyes. “Max, go get your cochlear implant.”

It is the summer of 2008. The subway clatters along. A thick layer of of voices overlap and clash with each other. Cars honk at everything for no particular reason at all. On top of everything else, the pigeons insist on jabbering to each other all the damn time. I have moved to Manhattan for a summer internship and I live in a tiny apartment with five women who let the garbage overflow and leave pubic hair in the shower drain.

I go back to my room, absent-mindedly straighten up my items, then head back out into the hall. Of course, my mother notices that I am not wearing my cochlear implant.

After yet another day of swimming through a smelly mass of humanity on the noisiest and slowest subway in the world, I finally am fed up with all of the sounds. Easy fix: I decide that I don’t really need to wear this thing while I’m in the city. I take it off in the middle of Canal street. Presto, instant bliss, just like that.

“Well then, how are we supposed to talk?”
I stand there with my mouth agape – she may be hearing, but I expected her to know better.

What am I supposed to say? How am I supposed to explain that sometimes, as nice as the universe of sound is, it can be even better to walk through Manhattan with one less distraction among this sensory bombardment?

I walk back into my room and grab my cochlear implant. I put it on, but I do not turn it on. I still can’t hear, but now my mother is satisfied. Ironically, I still understand her just fine – I can lipread what she’s saying.

[Note: this post is part of Disability Carnival #68; the July theme is "Evidence" and is hosted by Deeply Problematic. You can find posts by other participants here.]

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Diane Arbus

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Posted by maxporter on July 29, 2010 – 3:13 AM
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I’m currently taking a few online classes for the summer. Last week in one of my classes, we studied Diane Arbus, an American photographer who worked from the 1940s to her death in the 70s. Basically, the premise of Arbus’s best-known work is that she photographs “freaks.” (This is not my term, but the term that Arbus herself and many critics used.) In a similar vein, other famous photographs take “normal” people and make them look “freakish.”

A black and white photograph photo shows a boy in Central Park, with the left strap of his jumper awkwardly hanging off his shoulder, tensely holding his long, thin arms by his side. Clenched in his right hand is a toy grenade, and his left hand is held in a claw-like gesture; his facial expression is maniacal.
Child with Toy Hand Grenade in Central Park, New York City, USA (1962) by Diane Arbus

Arbus’s approach to her subjects made me really uncomfortable. It’s rather ambiguous as to whether or not Arbus actually got consent from her subjects. For example, that boy with the grenade? As he explained in an interview with San Francisco Chronicle, he didn’t even know it was in a museum until a classmate saw it years later.

Another part of my unease is the immediacy that I feel when I look at Arbus’s images – today, I have the privilege of being invisible, but I remember living in Manhattan as an androgynous person. Everybody stared at me. In Manhattan, for crying out loud. Once, some tourists took photographs of me on the subway. It is difficult to experience something like this, to go home feeling like a zoo animal, and then look at Arbus’s photographs and see this woman doing the exact same thing to her subjects. It’s not really such a leap to assume that, had I lived in the ’60s, Arbus would have gone crazy over how fabulously “freakish” I looked and put me on a museum wall for her own personal gain.

But it wasn’t just Arbus’s approach to her subjects that made me uncomfortable: the critical reaction to Arbus made me really uneasy. Academics and critics value “neutrality.” But I think that this is an illusory concept – if you look at it closely, the “neutral” viewpoint actually promotes a specific narrative. The narrative that I saw in many critiques of Arbus’s work was: “Everybody wants to be normal, because being normal is good. So when Diane Arbus made everybody, even normal people, look like a freak, that was totally disturbing because nobody wants to be a creepy freak.”

Some critics say that Arbus smashed the binary between “normal” and “freak.” I disagree: I think that she did the opposite and reinforced that binary. Personally, some of these “freaks” are my everyday life, integral parts of my social network. They are my best friends, my lovers, my second family. And me? I’ve been different all my life – I wouldn’t give up any of my differences because they make me me. I’m not a freak or normal in and of myself. Nobody is. It is society that arbitrarily applies the label of “freak” to some and “normal” to others.

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Cochlear Implants and Music

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Posted by maxporter on July 27, 2010 – 7:06 PM
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Last week, I went in to get my cochlear implant remapped. Brief tech-talk: a MAP is a cochlear implant’s program, and remapping basically means “reprograming it.” This website has really interesting info on it.

I’ve had my cochlear implant since 1998, so this is a regular part of my life. I hadn’t gotten it mapped in a while, though. They recommend that you do it three times a year or so, but I hadn’t done it in about two years for various reasons.

Well, it turned out to be a rather interesting audiology appointment.

-~-~-~

Diagram showing the anatomy of the inner ear.
[Visual description: A diagram shows the anatomy of the inner ear.]

A cochlear implant has a number of electrodes on a wire that is inserted into the cochlea. Since I have a nucleus 24, I have 24 electrodes. Each electrode corresponds to a range of frequencies. When remapping, the signal strength of each electrode needs to be tested. For every single electrode, you hear a different pitched beep. I personally find this to be a very annoying and tedious process.

During this particular remapping, my audiologist asked me to count off the number of beeps in the “threshold” range to see how loud it had to be. If I could accurately count them, it was loud enough to be at a “barely audible level.” If not, it had to be louder. Everything went smoothly for this part of the testing.

Problems began to arise when we tested the “comfort” levels. This entails listening to a loud beep and saying “louder” or “softer.” The idea is to reach a beep that is at a comfortable level of hearing. While my audiologist was running the tests, she noticed that it was making my right eye twitch. Really badly. So she switched my implant to normal hearing mode and began asking me if my eye had twitched before.
I said, “Yeah, it started doing that a few days ago. It’d happen when the phone rang and stuff.”
She said, “Let me clap my hands and see if that makes your eye twitch.”
And, indeed, my eye twitched in time to the clapping.

Well, apparently, the facial nerve and the auditory nerve are RIGHT NEXT to each other. My right eye was twitching; my cochlear implant is on my right ear. Facial twitching is a sign that the auditory nerve is being overstimulated. Some people have eye twitches, some have lip twitches, some have sideburn-area twitches. So she put me on a completely different map and I have a follow up appointment with her in late August. She has some concern because of the fact that it was a fairly rapid onset, but this kind of side effect is not unheard of. My eye hasn’t twitched since the reprogramming, but everything does sound different because it’s a completely different map.

-~-~-~

This is where music comes in.

When I went home, I turned on a song named End of a String by Glomag. (Youtube video here, or listen to it on last.fm.) This is a minimalist chiptune song. Before, I’d perceived the first eight seconds as this beautiful mid-range pitch blur of sound. I was surprised to discover that it has approximately eight fairly high pitched beeps – they aren’t totally distinct from each other, but they’re not a blur of sound either. And this was a higher pitch than I’d heard before. I then turned on some songs by viking metal band Tyr and discovered that, like Glomag, Tyr works in a higher range than I’d previously heard.

That was kind of cool, I won’t lie. What wasn’t so cool, however, was that everything sounded flat and boring and muffled. My mom’s voice, my favorite song, everything.

My audiologist had reminded me to be patient and let my brain get used to the new program. I knew that already. But it was kind of frustrating – I was left wondering if music would sound this way forever.

Well, I’m pleased to report that, as of today, music sounds awesome again. Yay! I don’t know what happened, but I’m pleased that I can listen to music again.

For me, the whole thing really drove home one fact: Cochlear implants can lead to a unique perception of the auditory world.

If you are interested in reading more, a man named Michael Chorost, once wrote a pretty interesting article in Wired magazine about his quest to find an optimal program to hear Ravel’s Bolero as he’d remembered it before he got his cochlear implant. Personally, I can’t relate to some parts of the article – I’m more concerned with “will this music sound awesome?” than “is this the optimal setting for perceiving music in a manner that is nearly what a hearing person hears?” I also take some issue with Chorost’s implication that deafness causes isolation – I wish that he’d said “I feel isolated by my deafness” rather than using Helen Keller as a device to imply a universal “truth” that deafness is isolating. Overall, though, it’s a pretty interesting overview of the more technological aspect of cochlear implants.

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New Resolution

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Posted by maxporter on July 26, 2010 – 11:45 PM
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First of all, it’s ADA’s 20th anniversary and the blogosphere is all abuzz with the news. My favorite post so far is s.e. smith’s excellent post at FWD (Feminists With Disabilities). I’m already a big fan of smith’s blog, and in this post on FWD, smith has summed up everything that I want to say about with regards to the ADA. This quote from smith’s post encapsulates how I feel about the ADA: “It was a victory, but it was not a comprehensive one.”

To me, the ADA’s anniversary and the rich dialogue in the blogosphere is a call to action to make my words more visible. I do have a lot that I want to say and I want to participate in that dialogue, so I’m going to commit to posting more regularly.

One issue is that I alternate between wanting to talk about art, wanting to talk about society, and wanting to talk about me. Is this an art blog? A social justice blog? A personal blog? Well, I think it can be all three.
This is how I see it: Art and society mirror each other to a large extent. Neither art nor society exists in a vacuum separate from each other. For example, D.W. Griffith’s Birth of a Nation prompted a huge increase in the numbers of Ku Klux Klan members, so that is an example of how society is influenced by art. Conversely, society influenced this film’s aesthetics: blackface and blatant stereotypes were acceptable because the film came from a racist society. So I think it’s okay if I talk about both art and society instead of focusing on one or the other because they are symbiotic. And where I, an individual, enters the discussion is: I’m a huge fan of the idea that the individual and art are engaged in a complex dialogue. This may sound like fancy-pantsy intellectual babble, but that’s my opinion: the artist creates a “map” to the meaning of the work but it’s up to the individual to find it. Society comes in too because each individual is a member of society – I don’t ascribe to the “man is an island” way of thinking. So I, as an individual, am in dialogue with art and society, just like every other individual is. Here’s a tangled web: the relationship between the individual, art, and society.

In the past, one thing that’s held me back from fully exploring this web is that I don’t feel like I can sort out my identity enough to satisfy what most people want to hear when they read about deaf people. I’m in this sort of in-between space where I speak English and interact with hearing people the vast majority of the time, but I don’t consider myself fully part of Hearing culture. Plus, I’m queer, which puts me in another minority that adds more complexity to discussing how I interact with this world.
But you know what? I can alternate between speaking from an individual and from a systematic viewpoint as needed. I don’t need to feel like I’m speaking as a representative for a community because there is no possible way that I could ever do that, but at the same time, belonging to those communities helps make me who I am today. Honestly, intersectionality is a pretty large keystone in how I understand and discuss social justice, so that is why I feel I don’t need to try to untangle this web of oppressions and privileges that I experience. I can simply present it as it is: a complex tangle.

Last, but certainly not least, fear is also a major reason that I don’t post as much as I want to. In a society where I read about my sisters being murdered and people think that it’s totally fine – or even praiseworthy – to make art poking fun at these brutal acts of violence, I have to admit that I do fear for my safety even though I enjoy privilege as a man. Maybe I shouldn’t be so afraid because, like I said, I’m a man. And I enjoy additional privileges like having a supportive family. All the same, I’m afraid because, goddamn it, this society is fucking scary sometimes. But then I look at all these bloggers, like the team at Questioning Transphobia, who continue to blog in the face of death threats. They are really good role models and I look up to them a lot.

In the end, you know what I realize? My desire to participate in dialogue wins out over my fear of the repercussions. And if participation means writing long-ass entries about tangled webs, so be it. So, I hope that you, my dear readers, enjoy the rest of this blog.

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Accessibility Elsewhere: Therapy

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Posted by maxporter on July 25, 2010 – 4:29 PM
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Even though I mostly talk about accessibility in the arts, especially cinema, I’d like to point out that there are many other important areas that aren’t accessibile. One in particular recently came up in conversation: therapy. I was talking with a friend of mine about how sometimes we just want to talk to a counselor, but we sometimes feel like we can’t. The nearest therapists don’t know how to sign and/or they are hearing so they do not understand the things that we sometimes feel.

Personally, I don’t really have a problem with the physicality of communication in a therapist’s office. I do just fine on a one-on-one basis; problems only start to arise when masses of people congregate and their voices blur together. However, not every deaf person can say the same thing. I know plenty of people who feel as if English is an alien tongue. Or they don’t want to have to spare some of their mental energy to understanding their therapist at a time when they shouldn’t have to think about others. Or they feel awkward when they speak and fear that the therapist will misjudge their tone of voice. Or they may not want an interpreter there. There’s a million reasons that somebody would be more comfortable with a therapist who offers a wide array of communication choices in addition to providing an interpreter or relying on the deaf person’s lipreading skills. I know of one deaf therapist who offers sessions in ASL and via email, which is a pretty good idea.

After we consider physical/linguistic communication barriers, though, things begin to get a little murkier as we bring more abstract things into the equation.

There’s the issue of cultural difference. I often feel alienated by the whole process of therapy for several reasons, but part of it is that I don’t want to explain everything. For example, in the past, the most common question that therapists have asked me is if I feel isolated. The answer is: yes, but not for the reasons that you think. Deafness in and of itself is not inherently isolating; it is the unwillingness on the part of hearing people to include me that isolates me. I wish that more people understood that I love being deaf and that I love my hearing friends and family on an individual basis – it’s just that I don’t always love the way that this society is structured. Plus, I sometimes feel selfish for asking to be included.
By the way: Do therapists ask hearing people if they feel isolated? I don’t know. So many hearing people have asked me this question that I’ve developed an inherent distrust for it.

I also think that it’s difficult for some counselors to balance the effects of society versus the effects of the individual brain’s chemical composition. Take the hypothetical of a depressed deaf person. Is this depression due to being left out by hearing friends, or does it have a biological component? Most likely, the answer is “some combination of both.” But I feel like many therapists focus too much on one or the other. Again, I think that this happens to hearing people too, but deafness complicates things further.

Another issue is that I’ve found that a lot of counselors don’t really grasp the impact of belonging to multiple minorities. For example, I’m queer and deaf. But I haven’t had a lot of success in going to queer clinics because, once they hear that my family and friends are 150% supportive of me in every aspect, the therapist tends to say, “Okay, we’re done; you’re fine.” But that’s not necessarily the case. On the flip side of the coin, that deaf therapist that I mentioned earlier in the post? Personally, I’m not sure if I would be comfortable going to her because I don’t know how she feels about queer people. I haven’t tried, though, because she isn’t covered by my insurance.

That brings me to my next point: money and insurance. Don’t misunderstand me: I’m fortunate in this regard because my insurance is generally pretty good about mental health. But what about the majority of people? In the US, health care in general is pretty inaccessible to masses of people and mental health care is even trickier for many because our culture ascribes blame to the people seeking therapy.

So, for many reasons, I don’t think that therapy is accessible enough. How do we increase accessibility in therapy? I don’t have any answers for this question. But I think it’s important to start talking about it.

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Welcome to the Matrix: A Story of Rediscovery

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Posted by maxporter on July 25, 2010 – 1:12 AM
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When I was eleven years old, I found my first true cinematic love: The Matrix. I loved everything about this sophisticated, sleek, smart film. Those incredible special effects that redefined reality, the razor-sharp dialogue coming from the mouths of the coolest characters on the planet, and a perfectly paced storyline. I don’t even know how many times I watched it, but I watched it a lot. And I mean a lot. One week, my younger sister and I actually watched it three times a day, instead of merely once or twice a day as usual. It’s a wonder that the DVD didn’t melt.

Speaking of the DVD – I’m not sure why, but the original 1999 DVD did not include some lines of dialogue in the subtitles. Maybe it was just my DVD. I have no idea. What I do know is that I missed a bunch of lines here and there, but I never thought it mattered that much because I understood the rest of the movie.
For example: In the beginning, Agent Smith asks the cop if he has captured Trinity yet. He chuckles and says, “I think we can handle a little girl.” Agent Smith turns away angrily and the cop shouts, “I sent down two squads!” Agent Smith drawls out a response, but it’s not subtitled on my DVD. It always drove me crazy for a split-second, but then – look, Trinity kicked a cop in the face! Now she’s running on the roof and jumping over the street and through the window! So I didn’t dwell on it much.

Well, I recently rewatched The Matrix for the first time in… seven years, maybe? I popped in the same DVD that I’ve had since 1999. Since I live alone and can do whatever I want with my TV, it always has the captions turned on. My TV captions DVDs in addition to cable. So this time around, I didn’t turn on the subtitles via the title menu but instead let my TV do its thing and caption The Matrix.

As Neo says: Whoa.

Now I understood what Agent Smith’s reply was in the beginning because it was captioned: “No lieutenant, your men are already dead.”

Finally! I finally understood this line of dialogue! I hadn’t even realized how much it bothered me to not know what Agent Smith was saying, but now that I understood that one sentence, it added all sorts of new insights into his character and the scene in general.

But it didn’t end there! It turned out that all of the song lyrics were captioned, along with a tag indicating who the singer was. During a scene that I’d always thought was silent, I was surprised and delighted to discover that Massive Attack sings a snippet of Dissolved Girl. (If you’re curious, it’s the scene when Neo is asleep in front of the computer and awakes to find that it is writing messages to him.)

These small things added a more complete sense of satisfaction to the film. Usually, when I watch a film, my brain whirrs in the background because I’m trying to do little things – figure out what that guy said, figure out who said that line of dialogue, try to work out why that character suddenly looked offscreen. This time around, I no longer had to do that and I could fully relax and enjoy the movie for what it was. I was very pleased to discover that I still loved this film despite the lackluster sequels.

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