Friday, November 27, 2009

Youth Activism and HIV/AIDS or How I Blinked and Accidentally Became a Sexual Health Activist

I am an activist. I advocate for a lot of things. I am a youth activist, a queer activist, a Deaf activist, a mental health activist, in a weird way I guess you could even say I am a health in general activist too. One form of activism I've always respected but have always felt that I should be the last person on earth to talk about or take part in is sexual health/HIV/AIDS activism. There's lots of reasons, but I'm really not the one you want talking about sexual health. I just don't have the background for it.

So, tonight I went to the launch of "Empower. Youth, Arts and Activism: An HIV/AIDS Arts Activism Manual for Youth by Youth". I have to admit that I went in part because the project sounded cool, and I wanted to check it out, and see what I could take back to my own activism in it's many forms, but for the most part I went because one of the most awesome, kick ass women I know: Jessica Yee was presenting, and since she is so crazy busy catching her when she presents is the only way to ever get to see her.

So, the plan was to go, hang out, probably learn some new things, and see where it all wound up taking me. In reality, I had no idea what I was about to walk into. The project is awesome, and the night truly was amazing. There were all kinds of partner projects on display, videos, t-shirt designing, drag performances, food (always a plus), really you name it. I got the chance to talk to some really awesome people doing some really awesome projects. Apparently when my sister was doing her big research project on peer-education in sexual health linked with HIV/AIDS (I know I'm butchering what it is actually called, but it was on using peer-education models and harm reduction approaches while teaching sexual health education linked to HIV/AIDS) she was connecting and working with a lot of the people who were connected with this manual. So I walk into the room, hear some of the names of the people who put this thing together, and realize that I know these people, and they know me, by name even though we've never met. So, it was pretty cool to meet people who I've heard so much about these past couple of years, they seem pretty awesome.

Then we're moving towards the end part of the evening, I was talking with Jessica, and ended up being introduced to half of the youth workers in the room, which was pretty cool, and then the next thing I know I'm being asked a very loaded question by a slightly panicked looking project coordinator. "We're down one of our panelists for tonight and Jessica tells says that you would be amazing at it, is there any way you'd be willing to be on our panel?" After pointing out that I have no connection to HIV/AIDS activism, and I barely qualify for having done sexual health work (I was told that my work with TEACH definitely counted, but I remain firmly on the fence about that) I agreed. I got walked through the plan for the panel (we were the guests on a talk show discussing sexual health activism and work) and it seemed pretty awesome, lots of being interactive and fun and generally really cool.

So, I got to introduce myself and the work that I was doing, and I think I've decided that after doing 4 panels in the last 2-3 weeks I really need to find someone who can help me write up a proper biography for things like this, and the three of us got to have a facilitated conversation on activism and HIV/AIDS. It was actually pretty cool, I feel like I held my own. I was the youngest panel member, we were all ironically connected with Planned Parenthood in some way, and just got to really talk about youth engagement, and using adult allies, and how it's important to listen to youth and let them be the experts on themselves and speak for themselves. I also got to talk about the lack of sexual health resources for queer women out there and how there really is nothing, I think that transfolk are probably the only group who have less resources out there than we do in terms of sexual health. (Which might explain part of why I don't identify as a sexual health activist).

Then after the panel there were a whole bunch of students reporting on the event through video and photography and I don't even know what else, who wanted information and a couple of interviews, and so I talked even more about HIV/AIDS and some of the technical parts of it that I do know, so we'll see what comes of it. If any of it goes anywhere I will completely post about it here.

So, that's pretty much what happened. I went thinking it would be good times, and just a chance to catch up with a friend, and then the next thing I knew I blinked and became a sexual health activist. I seem to have activism thrown on me a lot lately. It's a good thing.

Monday, November 23, 2009

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.

Tuesday, November 17, 2009

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.

Saturday, November 14, 2009

You mean.. we're going to talk about suicide? In the classroom?

I've always thought that our mental health system has been a little bit screwed up. Aside from the great conversations I've had with people about the language that we use within it and to describe it, I've always thought it to be so screwed up that it is one of the few sectors in the world where the people we are trying to serve within it have virtually no voice to express their satisfaction or dissatisfaction with the services and care that they receive. I stayed in the hospital overnight this past summer for surgery and was given extensive opportunities to provide the hospital with feedback on my care, including naming nurses or staff who had performed well during my stay, but in the years that I've interacted with the mental health system I've never once been given the opportunity to provide them with any feedback on the work that they do.

I've always had a lot to say about mental health issues, they've impacted my life in quite a tremendous way, but as I've said before I've never found a forum that was willing to hear what I had to share. That is what made what happened this week so special and interesting for me. CAMH sponsors a film festival here called Rendezvous with Madness. They show films related to mental health issues and run panels to discuss various themes from the films, often involving mental health professionals, filmmakers and those with lived experiences of whatever is being presented on the screen. The really cool thing that they do that they've been doing for the past few years now is running a program where they curate a series of short films, and present them to high school students, in order to start dialogue about mental health issues within the school. For those panels they were looking for youth panelists with lived experience of mental health issues. It just so happened that I heard that they were looking, and jumped at the chance to be involved.

First of all, I have to say that I am very impressed with the work that they are trying to do. Just the fact that they were willing to bring issues of anxiety, psychosis and suicide to the table to dialogue about is incredible. If you look under the school program section of their website you can see the descriptions of the films that they were presenting. These were not light topics. I am impressed that they were thrilled to have a young person with lived experience of the mental health system on their panel. This speaks heavily to wanting to actually use a youth engagement model. This is good news for people like me who are trying to have those opportunities to speak to what they know.

The first day was amazing. The kids were fully there and engaged and they had lots of amazing questions. As I was talking to them it reminded me of some of the crazy things that were going on around me before I got help. Remembering things how long friends tried to convince me to talk to someone for before I actually listened to them, and the things that I did to avoid people knowing just how bad things really were. It was such a blast from my past. It was good though, it let me see that I had a sense of perspective about all of it now that at 15 and 16 I just didn't have. Then the world was scary, but now I can see a lot more clearly exactly what it was that was going on. My one regret from the first day was that we didn't have time to answer all of the questions that the youth had, and the youth didn't feel like they could come up to the panel afterward to ask their questions.

The second day was a bit more challenging. The audience was a lot younger. Grade 7 and 8 students as opposed to grade 11. We had less time, and opted to cut out two of the movies. For the grade 7 students we actually showed them the video that dealt with suicide, and there was a large backlash from the school from that decision. If you read the description, then like me you are probably cringing at the idea of making a pro-con list about committing suicide, thinking that it is far too tacky, and if someone is thinking about committing suicide then the bad to them likely does outweigh the good. I do have to say though that if you can get past the initial cringe-factor the movie actually does a really good job at proving his point. That sometimes the bad things do outnumber the good things, but that things have different weights too, and that no matter how bad things are, there are always things to hold onto. That suicide is a permanent solution to problems that can usually be fixed, or endured until they are gone. I was really impressed with the kids during the panel because they asked really intelligent questions and asked about suicide, if the boy in the movie was mentally ill because he had been thinking about suicide. One of the answers that was given though I really objected to, I don't believe that everyone who commits suicide is automatically mentally ill. I think there are a lot of reasons, and it is way too complicated to paint everyone with the same brush. Some people could have a diagnosable illness sure, but many others wouldn't necessarily. It isn't that simple. But I digress. The school requested that we not play the suicide video for the grade 8's and with reluctance the group agreed. I think that this was quite irresponsible of the school to be honest. The point of the festival was to invite dialogue, and when suicide is such a problem, it is the 3rd highest rate of mortality among teenagers, it seems quite irresponsible to shut any kind of dialogue on it down. I know that for myself the societal silence on suicide makes trying to deal with it or talk about it even harder. Especially when the idea that the silence perpetuates is that this never happens, or that merely talking about it is enough to get you hospitalized. It is enough to make anyone terrified to reach out for help when they need it.

I personally think that programs like this one should make their way into all high schools. I know that mental health education in high schools tends to focus on softer topics and doesn't often hit onto the very real experiences of youth. I like using the films as a way to start dialogue and sharing stories because it gives the group a common ground to start from. It gives them a chance to see what it can look like at the extremes, and then gives them a chance to look critically at the relationships and stigmas that it sees portrayed. I wish that there had been something like this when I was in school, where there was someone telling me that it was okay to get help. I just wish that it was longer than one week a year. Both for my own activism and sense that for the first time I had the opportunity to talk about what I went through, and for the sake of those who I had the chance to touch. Had I seen it then I would have been terrified that people crawled into my head and pulled out the ghosts that were hiding there, but I would have wanted to talk about it, and maybe then I could have found a way.

I'd be really interested in knowing what the conversations and feedback from the kids was like after they left. The more we talk about these things the less scary they are. That's what I believe anyway.


There was going to be an introduction post, but then, I decided not to. Those of you that know me know who I am, and if you don't know me, you'll soon figure it out. Who I am is complicated to explain in it's simplest form, and it's easier just to show you anyway. So, let's get to it.

Welcome to "Erasing the Gaps". The name comes from the gaps that we as society create when we don't discuss issues, put them aside and don't have the discussions we need to have. That the gaps that are created by a lack of dialogue create trauma and perpetuate the every day operation of society that allow inequality, oppression and trauma to occur. I want to use this space to start talking about things that make people uncomfortable. To be honest and real, but with a focus on identifying issues and making change. Starting dialogue to move forward from.

That's the plan anyway. So welcome and we'll see where the journey takes us.