Earning the big D

I had this nasty problem. One that no matter how hard I tried to figure out how to resolve it I never quite knew what to do.

Inevitably time and time again someone would come up to me, or I'd meet someone and I'd struggle for how I would define myself.

For those of us with hearing loss, there are quite a few options:

There is the supposedly politically correct hearing impaired, which is by no means the politically correct term that it maintains it is. I would like to figure out what exactly is impaired or deficient. Needless to say, unless someone has decided that it is an appropriate identity for themselves (typically an elderly population who has never learned to sign or would know what to do with ASL if it hit them over their heads) don't use this term to describe anyone. It isn't going to go over well.

There is the label hard of hearing. This refers to those who have hearing loss, but typically in the less severe categories. They typically rely on devices to correct their hearing such as hearing aids, and will speak and speech-read as the need arises. Typically those who identify as hard of hearing have no knowledge of ASL or Deaf culture.

There is the label of deaf which refers to an audiological state of deafness. People who identify as deaf have severe to profound levels of hearing loss, but will either correct it using hearing aids or cochlear implants or will rely on speech-reading. Again those who identify as deaf may know a few basic signs to get by, but the majority of the time they rely on other means of communication.

Then there is Deaf. Deafness in this case refers to both an audiological state of deafness as well as a belonging to the Deaf community. There is a cultural aspect to your Deafness as well. Deaf people sign, they attend events in the Deaf community, they value ASL and are often activists to protect their culture and their language.

As with any kind of an identity label they are all self-identified and there are always exceptions to any rule.

Which then leaves me. I have struggled for months with where I fit into this jumbling confusion of labels. I can hear out of one ear. I can do most of the things I do in spoken English. I sign. I use interpreters. I am involved in the Deaf community and Deaf culture. Really, for the most part I'd become an expert at avoiding the question when people asked me whether I was Deaf or hearing. I got used to the sideways glances my friends would give me knowing the story that was about to erupt from my hands or mouth depending on the setting. The fact that most of my stories begin with it's complicated seemed to be a dead giveaway.

Somewhere though, I became an activist. The rights that I were fighting for were no longer the rights of a group of people that I was supporting, but they became my own. I was fighting for my own rights to access information and events that anyone else would have the right to. It isn't just friends and acquaintances who are being denied access, it is me. The more I start to live in this world, the more it fits me, the more even though sometimes watching interpreters all day makes me want to remove my eyes from my face and eat them, the more I still value that time. It is time where I'm not standing against a wall or in a corner because I don't understand what it is going on. Where I can hear the noise around me, but not well enough to make sense of any of it. It is time when I get to be fully involved, fully engaged, happy that I'm not making a fool out of myself because I am refusing to acknowledge how much I can't hear. It is realizing how much I hate the phone, how hard it really is for me, and how cut off I am from the world if my one good ear is glued to a device, and how much I prefer to write or sign.

A friend of mine got into Ryerson this week. Hopefully eventually into my program, but for now knowing she will be at the school is enough. We started planning our year, figuring out that we wanted to be involved, both sort of realizing that we wanted the safety net of another to hold our backs. Both being delighted that we weren't going to be "the only one" at anything we went to. Realizing that it was about community and support and having spaces.

After a full day of fighting for rights, and winning the fight to have access, I realized that that was the moment, when I had least expected it. Stuck in an email war against a bureaucratic institution trying to deny their right to make their open event accessible, I earned my D and the identity debate was gone forever.

Are we really doing ourselves any favours?

I have to say, like many many others out there I have become obsessed with Glee, and since even my mother has watched it that means that probably about 95% of the population has at least heard of it if not seen it (sorry mom, I know you're reading, but let's face it, it's true).

It's actually spawned a couple of really good conversations about the things that the show does right, and the many many things that it does wrong. I kept meaning to summarize some of those conversations and my take on the broader issues around it here, but I'm glad that I waited, because as it is often apt to, something else came to my attention.

I walked into work today and found this article hanging off of one of the staff's door. It is yet another article singing the praises of Glee for bringing issues of access and dis/Ability to the forefront of North American prime time. I read it and just cringed inside. This is what we are championing as a good model of inclusion for the future Early Childhood Educators of Toronto?

I will be the first to give the show some credit where credit is due, it does as the article suggests actually cast characters with disabilities as main recurring characters, and creates plotlines around them. However, I will openly question if the inclusion of Artie as a choir member was an attempt to continue to dramatize the underdog and outcast role that the group begun from. Something along the lines of "Oh, what could make a show choir even more pathetic? Oh, I know! Let's add in a character in a wheelchair! Then later when we really need it, we can have the group drawing inspiration and spinoff plot lines from him too and no one will ever guess it was just a giant joke to begin with." I question the inclusion of the Deaf glee club from the same kind of thinking "What kind of groups could be out there that would be even worse off than this school's Glee Club? Oh! What about Deaf kids? We all know they can't sing, and oh hey criminals!, those sound like good odds."

There are two other aspects of the show that I do like. I like that Kurt had the freedom in his role to be not only as effeminately gay as he wanted, but then also to be the hero of the football team for winning the first game for them. The fact that he didn't have to change who he was and was given the freedom at this seemingly incredibly homophobic and small minded high school is showing that sexuality isn't nearly the issue that it used to be. If you have the skills go for it. The second aspect was something that was actually pointed out to me that I hadn't stopped to consider, but it was how Artie reacted to Tina divulging that her stutter was actually faked. Artie seemed very very genuine in his response that he thought that he and Tina had something really important in common, and understood what it was like to be different, but that if she was just faking then they didn't have any common ground to stand on. The bottom line was that without understanding the frustration of not having a choice in how people treat you or see you, it doesn't really matter. I can totally get Artie's frustration of "Well how come you get to walk away and be normal now, when I'm still stuck here the way I've always been."

I think the thing that really gets to me about all of this though is the idea of representation. How these things are being portrayed.

One group GLAAD (Gays & Lesbian Alliance Against Defamation) does a media report every year on how Queer people are represented in the media. This season's report shows that about 3% of all characters on TV are queer. This is a huge contrast to the roughly 10% of the population that identifies as queer. I'm sure that there are several other groups out there that monitor how people with dis/Abilities are portrayed, various cultural and ethnic groups etc. This is just the one that I know off hand. I'm sure that all of these groups would share a similar finding though, that people from all of these groups are under and poorly represented in the mainstream media.

This is where the problem comes in I think. People get so excited to see themselves represented on TV that they are willing to overlook all manners of sin just because they see themselves in that moment as visible. I would be lying if I said I wasn't guilty of it. The fact that Glee had a song performed in ASL by a Deaf glee club was the entire reason I even started watching the show, and figuring out what it was about.

In dealing with the Deaf school there are two things that really bother me, one I noticed right away, the other took more time and reflection. The first is how they treated the character who was the teacher of the school for the Deaf. Why not pick a strong Deaf role model for these kids to look up to? Why not have the teacher be culturally Deaf and a fluent signer? Instead they chose to make him appear to be a complete idiot who was supposedly deaf in one ear, who screamed at everyone and insisted on telling everyone repeatedly that he was deaf and why. Now, I am deaf in one ear, and if I appear as one eighth the fool that he does, someone please just shoot me now. No one goes around like that. If the point was to add comedic value, why do we always have to use disability as the playground? What is the point of trying to push the message that we are all the same, if the message that comes out is only that we good to be laughed at?

The second thing is how they chose to deal with the glee club itself. I do believe as the article suggests that the fact that both glee clubs coming together to sing imagine was this great picture of unity between the two schools, and how in an idealistic world Deaf and hearing people can all exist together harmoniously. That being said, I'm sure that on another level it was a very surface level, though appearing deeply thought out solution to a pretty obvious problem. While watching Deaf kids do their thing is beautiful to those of us who sign and value ASL, for the rest of the world out there who doesn't sign, it is a pretty boring-ass way to spend 4 minutes of their lives. The writers were even kind, they chose to have a kid who was both oral and signed to voice the song so that the viewers didn't have to depend on open captions to know what was going on. Still this was not enough auditory input for their viewers so instead of really giving the Deaf kids their moment to shine, they chose to go for the big show. When it's all about viewer numbers and advertising who can blame them right? Also, I have to say that during the finale their choice to make the Deaf choir an entirely audio-track singing horribly off-key and out of tune downright upset me. Why go through all that work to set a good thing up, and then totally write it off when it comes up again? How hard would it have been to film both scenes at the same time? Why have a Deaf choir if you aren't going to see it through?

For me what scares me is that we see ourselves portrayed in these horribly unrealistic and negative ways and we cheer. We cheer that at least we are being seen and being mentioned at all. We don't stop to think critically about the messages people are taking away with them about what our own difference looks like. We don't demand better representation, because we are at least seeing ourselves, and that is better than nothing at all. It's better than being ignored and forgotten. I just wonder how if we don't push to see ourselves represented in positive realistic ways how we are allowing ourselves to get further ahead at all.

Difference in Action

I think that it's a lot of things, but late Friday night I found myself out for dinner with a bunch of friends, and we had some really interesting conversations. Earlier on in the night we had spoken about our various experiences as Deaf people in the education system.

Now, first of all, sometimes I really struggle with using the term Deaf to describe myself, but in a lot of ways it is really the right term. At least in that context anyway. I still have a fair bit of my hearing left. I interact with hearing people everyday by speaking and listening to them. Listening and not speech-reading. That being said, people with hearing loss who are like me are a huge anomaly. Especially when you take into account that I lost my hearing when I was in my 20's. Virtually no one with hearing loss such as mine goes on to use ASL as their preferred way of communicating to deal with hearing loss. It just doesn't happen. They will use hearing aids, implants, speech reading, captioning, but will not learn ASL. I already knew ASL/was learning it. It seemed like a natural leap for me, so I did it. This puts me in a strange place where I am not typically hard of hearing because I sign, nor am I typically Deaf because of how much I hear. I am getting more comfortable and leaning more towards the use of the term Deaf, but for now I very much feel like I have a foot firmly in both worlds, and that makes me... Something that I'm not quite sure what. I just wanted to explain a little bit as to how I came to cast myself as a Deaf person within the education system.

The one comment that stuck out for me in all of this from a discussion about knitting, and being able to knit in class, was "Deaf students don't have the same rights as hearing people in a classroom"

I have felt that way since the day school started. The school has hired 2 interpreters and a professional notetaker for me in all of my classes. This is not exactly a small expense. According to the agreement I have with the school, they provide me with these services, however I am obligated to let the interpreters and notetakers know if I will not be in class on any given day, and if I fail to do so enough time, I can lose the right to have these accommodations. This was part of what influenced my decision to ask for interpreters, aside from the part where I was right that I would need them in the classroom, I tend to have a number of days where I hover on whether or not I should drag myself to class. Usually just the added work of having to email the interpreters and notetakers to let them know that I am not going is enough to make me just get out of bed and go, because I see myself as accountable to them. Therefore, the first right I lose is the right to skip class as I please. Actually a bonus when it comes to me attending my classes, but even on days when I am legitimately not feeling well or need a break, I feel guilty that I am not going to class. And also, if I'm not in class or leave class early it is impossible for me to be inconspicuous when it means the absence of 3 others in the room besides myself. In a class of 50 students I lose my invisibility. This means that all of my teachers know who I am, but they also know when I am in class versus when I am not, and out of a room of 200, I still stand out purple hair aside.

In College, even in my sign language courses I would often knit in class. We didn't often have to take many notes, we often had big group discussions and it was an easy way to keep my hands busy, but my mind still engaged in the learning. Now as things that we talked about in the interpreter program (such as how memory works) come up again in my classes I actually realize how much information I recall from when I was knitting. Now I find that despite the fact that I literally have nothing to do in class but sit there, I feel guilty as anything if I pull out the knitting. I can knit and take in sign at the same time. I did it during presentations and several other points last year. I have to be more careful about what patterns I knit, but it is easily doable. It is sad for me because I do concentrate better if my hands are busy, and hopefully as time goes on I will be able to knit in class again, but for now, part of why I get into trouble (with not being able to sit still and making smart ass comments to the interpreters) is that I don't have anything in my hands to keep me busy enough to be engaged in learning.

The other thing that I find is that I am treated vastly differently by my peers. They don't understand why the interpreters are there, or who they are even there for many times. I remember one story that happened about a month ago, I was sitting in class early, and the class was mostly empty. I was talking to this girl who was sitting behind me. She was very soft spoken and I was having a hard time understanding her, and as the room began to fill up, I was having even more trouble. It got to the point where she was having to repeat herself three or four times for me to understand what she was saying for every sentence. By this point one of my interpreters had arrived so I explained to her that I was going to ask the interpreter to come over and interpret for her because I couldn't hear what she was saying and that it would be easier. The interpreter came over, and she just shut down. I know that it can be weird to use an interpreter at first so I started asking her questions about what it was she had just been saying, but she began giving me one word answers. Eventually I just gave up. It was so frustrating though to see how differently I was treated in a 5 minute time span by the same person.

I understand that things that are new for us can be scary and it can take some getting used to things like working through an interpreter. I don't expect people to know what to do all on their own. Having to teach them is okay. I just can't stand that people use my difference and my Deafness as an excuse to treat me differently. To make excuses about why they can't do something because I am different. Asking the teacher to put on the closed captioning for a movie, or leave the lights on at the front of the room so I can see the interpreters should not be as much of a fight as it is half the time. I understand having to ask once, but the continued struggle? When having this information is taken for granted for every other student in the room? I don't get it.

So do I think that Deaf students have the same rights as everyone else? Absolutely not. That doesn't mean that I know how to fix the problem though.

Independence and Reality

I like to think I'm invincible.

I like to think that there is nothing I can't do, and nothing that can stop me. If I admit that I am only human and that there are just things I can't do, that gets scary for me. I'm fine with admitting things like "I can't leap tall buildings" or "I can't run a marathon" most people would agree that building jumping can be dangerous, and that if I tried to run a marathon in this shape I'd likely injure myself (though, I can walk a marathon... That's a pretty good first step).

My point is that recently my world changed, and something I took for granted that I could do, I'm finding that I can't do so well anymore. I've lost most of the hearing in my left ear. I used to go to school to become a sign language interpreter, so I spent 3 years of my life learning sign language. Now every day that I'm in class I use sign language interpreters. It's funny because I feel like I have to defend why I need my interpreters a lot. I speak for myself, if you come up to me to talk to me I can for the most part hear you, and it's funny because a lot of the time I even ask myself why I have interpreters. I ask myself if it is worth making all this fuss. At home I don't use ASL. At work I never have interpreters. I am grateful that my hearing is still good enough that I don't need to use interpreters for my medical appointments or therapy. As much as after 2 years of the interpreter program I know the ethics and confidentiality that get drilled into interpreters from day one, I still am glad that I am able to not have a third person in that room.

It's hard for me sometimes. It feels like a huge loss of independence. If I go to class I can't take notes for myself because I can't take my eyes off the interpreters or I miss what is being said. There are an extra 3 people in the room just for me. If I need to leave a class early, or walk in late everyone notices because it isn't just me doing so. The times that are getting too numerous to count that there is some sort of interaction or problem between my teachers or peers and interpreters or I that would have never happened had I not needed an interpreter gets really frustrating as well. It is becoming so obvious to me that I get treated very differently when I use an interpreter compared to when I don't.

A friend of mine asked me if I really felt that the interpreters were causing me to lose my independence or if they were helping me to gain independence. At first I would have answered her lose independence, absolutely. I'm beginning to wonder though. In class a few weeks ago we were doing a group activity. Sometimes in small groups I need the interpreters, sometimes not, it depends on how loud the room is. I called the interpreter over and asked her to interpret. I forgot that I had the interpreter right there, and just relied on my hearing to hear what one of my group members had said, and despite the fact that the interpreter was correctly interpreting her comment, I completely misheard and replied about something else entirely. Had I used the interpreter for what she was there for, I wouldn't have made a fool of myself or made it quite obvious to everyone around me that I actually needed her there. The time when I notice it the most though is when I am at work. My coworkers usually forget that I can't hear and call me from halfway across the office to ask me something. Usually I don't hear them. It isn't until they call me 2 or 3 times or someone else points out to me that someone is looking for me that I know. Having the interpreters there levels the playing field in a lot of ways. Yes I need them, but if they aren't there, I am always going to be dependent on other people. I will need them to tell me when people are trying to get my attention. As my hearing gets worse that is only going to get worse from here on out. As much as I love to write I would far prefer the fullness of ASL to being reduced to fully written communication. Words on paper can only express and show so much, or allow for so much spontaneity.

I think in the end though it comes down to a lot of things. It comes down to accepting myself, and that despite what I wish were true, I can only hear as well as I can. That I am always going to have interpreters in my life, and I am lucky to be able to say that this year's graduating class of interpreters are my friends and peers, and I would love to have any of the interpret for me. (Don't worry, I don't see us as being too close to not be professional in a classroom setting, there's room for jokes and stories I promise ;-) ). It means seeing the interpreters as my allies who's role is to allow me and my classmates to fully communicate with one another. It allows me to choose whether or not I want to speak or sign, and allows me to communicate in the mode that I feel most comfortable. In that choice is where I find my independence. It allows me to be independent because there is no way that I could participate in my education to the same extent without it.

In the end though, it just is what it is, and there is an entire discussion to be had on difference another day.