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.

Why Sexual Health Activism is Important to Us All

I've done a lot of reflecting this week. Especially with the Empower launch, and it being World AIDS Day yesterday, I've been rethinking my position on not being a sexual health activist, and I've realized that maybe I couldn't help but be one after all.

Sexual health is a really tricky thing. Access to sexual health information is so controlled. So the first impact I guess would be colonialism. That according to the WASP values of our society, no one wants to talk about sex, or admit to having sex outside of marriage, so you end up with abstinence-only sex education, which they already know does not work. You also end up with this learned discomfort around discussing sex. I think that the learned discomfort is so dangerous. If people can't talk openly and honestly about sex then how will they get access to the information that they need.

I think then that is where this starts to also move over into feminist views about sex and sexuality and the enjoyment of sex. Or sex-positive perspectives. That was the term I was looking for. The idea that we can teach people that it is okay to find pleasure from sex. I know this is a shocking and radical idea, but in our society sex really isn't about procreation anymore. I think that it is also about empowering women to be able to find control and ownership of their bodies and their sexuality. I think that when you create conditions that allow for people to feel like it is safe to talk about sex being something that they find pleasure in it opens up the door to talk about other things too. I think that when it is safe to talk about sex being a positive experience for people, it makes it okay to start dialoging about when sex isn't positive. It allows you to start having discussions about things like sexual abuse, harassment, assault and rape. Conversations that when they don't get had make these epidemics invisible. When we don't talk about them the women who have survived them feel isolated and alone, feeling like there is no one who can understand what they have lived through or provide support. It allows the silent acceptance of these evils, and allows them to continue. If we continue to accept that women have no say in what happens to their bodies, and no right to enjoy sex then how can we expect to move forward and address the sexual exploitation of women, when we have already tacitly accepted it as matter of course in our society.

I think from here I'm going on to touch on homophobia and ableism.

Sexual health education and sexual health care as it exists today is quite homophobic. I know queer woman who have been told that they don't need any kind of sexual health care because they were only having sex with women. I know that there is not a lot of information available out there on safe sex practices for queer women, and even though queer guys can extrapolate the always use a condom lesson that is pounded into most high school students today, for queer women their needs are never addressed by the mainstream school system, and often ignored by the health care sector as well. The only group who I think really gets worse sexual health care is the trans community, and that's related to sexism, and how and where they fall on the gender-binary.

Ableism is huge. I know how hard the Deaf community works to make sure that sexual health information is accessible to them. I also know that there is always more work to be done. I know how many stories I've heard of so many many disability communities not having access to appropriate sexual health information. How much mainstream information is there on sexuality that is written in braille or available through an audio format? How many of the mainstream brochures discusses how to modify sex for persons with mobility issue? Is this information available at all from credible sources? How many times are persons with developmental delays not given any kind of sexual health information at all? I understand that it has to be developmentally appropriate, and it can take time to teach it, but that is no excuse for failing to teach it at all.

Having the opportunity to participate in the panel last week gave me the opportunity to reflect on the fact that I feel like many of the barriers that I've discussed are the reasons why I did not identify as a sexual health activist, and the exact reason for why it is that I should and that I need to. One thing that rang for me that I said at the panel was basically, if we don't speak to our experiences who will, and what are they going to say and decide for us?

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.

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.

Beginnings

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.