Wednesday, December 17, 2008

I heard words!

Hi Everyone!

This morning I saw my audiologist to adjust a few things on my hearing aids. While I was there I had her try some speech discrimination stuff with me. It was very informal but I was curious and wanted to try. I have noticed myself catching the odd word from time to time and I wanted to know if it was a fluke or if I am actually hearing these words. Today, we proved that I am actually hearing these words! I heard the words "hot dog", "colour", "doctor", and one other word that I can't remember anymore. There were a lot of other words said that I missed but I got a few.

Here is my dilemma now - I am excited that I heard the words. I am Deaf, but I am happy I heard some words. It also brings my mind back to the cochlear implant debate. I have stopped singing and my involvement in music culture has dwindled significantly, but music is still hugely important in my life. In the past the music argument has been my number one debate against cochlear implants for myself. I'm not sure if I have that argument now, and to top it all off I liked hearing those words today.

I know that if I open the cochlear implant door again I will end up enraged, furious even. The complete lack of respect that I have come across in the industry is horrific and not something I want to subject myself to again. I finally have one audiologist that is accepting of how I have chosen to deal with and approach my hearing loss. I don't want to lose that either, because believe me - it's a lot easier when the audiologists are on your side!

I have been more confused about my feelings regarding my hearing loss today than I have in a long time. I'm afraid to be excited about hearing those 4 words because I feel like it may somehow subtract from my Deaf identity. With that thought I have shifted back to discussion about socialized identity and how it defines me. I know identity is always evolving but these days I am finding it hard to stay caught up!

I have an exam that I need to study for now, so that is it for today!

Jenny

Tuesday, December 16, 2008

The Reality of Inclusion

Hi Everyone,

Since the start of University this past September, one of the things I wanted most was to go to a class alone. When I say alone, I mean without interpreters. I was curious to see the reaction from students when I appeared to be "normal" and I was also curious to see how I could hold up alone.

Last night there was some scheduling confusion and I ended up being without an interpreter for an hour. I sat in the classroom with a bunch of students from my Linguistics class and I felt like I was one of them for the first time. I looked around the room and watched my peers. They had all pulled out their books, so I did the same. A few moments later a teaching assistant arrived to lead the extra help session. As I watched the class around me begin I felt left behind. I was fine sliding in with my peers, acting hearing, until the class started but then I realized that I was only able to understand the odd word from speech reading and certainly not enough to make a sentence.

As the hour progressed I wanted nothing more than for my interpreter to arrive. I finally had come to value the access to communication that they offer for me. By the time she did arrive I was already exhausted from trying to catch any part of the class discussion up to that point. As she jumped in and started interpreting I was able to relax and I was understanding everything.

All semester I have thought that the interpreters make me stand out and I blamed them for the exclusion I was feeling at school. Then, when I didn't have an interpreter, I felt even more excluded and left out. I can't blame it on the interpreters anymore, it is very much me. I realized yesterday that I can't resent interpreters for it and I need to really analyze the way I am doing things.

My approach to University has changed a lot since the start of the semester, in a communication sense anyway. In the beginning I had decided to voice for myself some times. I told everyone I was fine in most 1-1 situations and I was willing to try to speech read if the need arose. For next semester I have already started to change that. I have told my new profs that if we need to communicate without an interpreter it will have to be through note-writing or gesturing. Aside from with a few people in Toronto, I have turned off my voice.

Jenny

Monday, December 15, 2008

Hidden Passion

Howdy!

When I first started to get involved with Deaf culture and distance myself from the hearing world, one of my most initial thoughts was that I couldn’t be Deaf and still hold onto my beloved passion. It became this secret that I would try to hide whenever there was a Deaf person, interpreter, or hearing/signing person around. It was like this secret addiction that I couldn’t talk about because of a fear of being prosecuted.

Slowly, I began to open up about this life altering need of mine. I started to feel comfortable enough to let those that I love and trust know about it’s importance in my life. I was finally able to express that I am indeed a Deaf person with a passion for music. Soon I came to discover others with this same love and I realized that it was nothing to be ashamed of.

I have spent hours, days even, of my life learning how to interpret vibrations as music. I trained myself to discern pitch from the way it feels. I have sat in my audiologists office for more appointments than I would like to count trying to program my hearing aids to maximize my ability to understand music in an auditory sense. All the while feeling like a traitor.

I watched as the Deaf world and the music world started to collide for me. I started to discover, and enjoy, interpreted music and I was able to understand the lyrics to sounds. However, music is more to be than lyrics. It is tactile, visual, and auditory. I can break it apart and only touch it, only see it, or only hear it. Music is this vast three dimensional world that I lose myself in.

I am not sure how many hearing people can truly value music for all of it’s layers. Being Deaf actually brings more to the music and makes it an experience that I feel more connected to than ever before. This guilty pleasure of mine goes beyond that of most peoples,. It embraces me and has become a defining part of who I am. I am a Deaf musician and I am proud of that.

I no longer conceal my MP3 player, cease taping out a rhythm on a hard surface, avoid concerts, and act like music is the tool of the devil. Music is in my blood, my heart, my soul, and every other part of me where it can hide. If somehow that makes someone think of me as any “less Deaf’ I would like to challenge them. Show me how music makes me more hearing than Deaf. Show me why music cannot belong to the Deaf world too.

Jenny

Saturday, December 13, 2008

Vlogs! Pah!

Hey everyone,

I finally have some Vlogs up!

They aren't anything new for those of you that don't know ASL. They correspond with my blog entries. I will go on Youtube a little later this week and title them all to match the blog entries.

I have only completed 11 of them and they are not very good quality, but understandable I think. I will re-record them over the holidays probably with a better camera.

I have a lot more to record and it does take significant time to do. More to come soon!

Jenny

Sunday, December 7, 2008

Hearing aids: Why, Why Not, and When

Hello one and all!

Today I want to talk about those torturous little plastic demons that rest behind our ears -- a harsh description, I realize, but my feelings are strong.

For a long time I wore my hearing aids everyday, during every waking hour. Partially because I was forced to and partially because I enjoyed hearing things. As time went on I became more self-conscious of my hearing status and became ashamed of my hearing aids. I grew out my hair so it covered them, and made sure they were beige so they didn't stand out too much. I still wore them more or less all the time. At this point I was still in high school (a hearing high school) so I liked being able to hear what was going on around me. My peers also had a habit of throwing things at me if I didn't respond to verbal calls for attention.

When my hearing dropped 30 dB without warning I ended up going about a month without hearing aids while we waited for my new ones. This also meant a month of complete silence. At the time I was very bitter. I just wanted to hear something! As the month went on I became used to my silent world. I learned to appreciate it and value the silence. It was my own little world and I was safe there.

When I got my new hearing aids I wore them all day, everyday, for about a week. From there the use of them dwindled. I reverted back my silent world and became comfortable there. I still use my hearing aids now, but only in certain situations.

For the most part I will always have them on when I am at school. Whether or not they are turned on is a different story but they are always on my ears. If it is between classes or I am just hanging out on campus for some reason they are normally turned on. During classes and tutorials it is hit and miss. It depends on the class and who the prof or TA is. If I like the way their voice sounds I will keep them on, if not I will turn them off. If I am with hearing friends and people I like to have them on too. If I am with Deaf friends and they have theirs on I also like to have mine on.

If I am alone and out doing errands or something I normally have them on my ears but not turned on. It is partially so the visual cue that I am Deaf is there, and partially so if I want to hear something I just need to turn them on. If I am home alone I never have them on.

The thing I find kind of funny is that now that they aren't beige I am more willing to use my hearing aids. I don't feel like a grandma anymore! Purple is much cooler and it matches my personality better too!

I'm tired so that is all for tonight! I was also thinking tonight that I should make vlogs that correspond with all of my blog posts. Catching up will be a lot of work though! I will try to do it soon! Perhaps over the holidays!

Jenny

Wednesday, December 3, 2008

Mr. Marley

Hi Everyone,

Next on the list of blog topics is my dog, Marley.

Marley is a 3 year old German Shepard/Border Collie. He is crazy, full of energy, and very smart. I am not sure what else to say about him, but here are some pics!


Tuesday, December 2, 2008

Christmas and What I Like About It

Hey Everyone!

Well, Alicia gave me a nice list of topics to blog about so I am going to work my way through each of them! I want more suggestions from others too! I have a goal to post everyday this month!

Christmas is a time of year filled with magic, snow, dreams, and family. My personal take on Christmas isn't always that simple though. I come from a large hearing family of which I am the only Deaf person. I have a hard of hearing grandfather who is in denial but that is the closest thing I have to a Deaf family member. This means that during those magical family gatherings full of constant chatter and conversation I am left out.

I have developed the coping mechanisms that other Deaf people have. I bring a friend that signs, try to lock down people in 1-1 conversations, hide in a back room, or just skip out on the event all together. Not only are these coping mechanisms applied at the regular family gatherings but office parties, and get togethers with hearing friends as well.

Then there is the shopping that goes along with Christmas. I think this part is miserable for everyone, hearing loss or not. When you factor in the hearing loss you get a whole new shopping experience. If you use hearing aids (especially of the power variety) you get blasted with sounds that make little sense and make your eyes twitch. You develop a headache only moments after stepping into the mall, which in turn leads to a bitter and angry attitude. As you walk through the mall and fight your way through the large crowds you wonder why you are subjecting yourself to such pain and torture. Finally you arrive at the first store. You run in grab what you need and make your way to the counter. There seems to be a problem and the cashier is saying something to you. Because of the strong accent you have no idea what they are trying to communicate. You gesture for them to write it down but they just over-enunciate and end up looking like a monkey trying to eat taffy. You look around desperately and catch the managers eye. They see the look of distress and the cashier turned orangutan and come to investigate. By this point you are now gesturing violently and digging through your purse looking for something to write on.

You finally find an old receipt and scribble on the back "I'm deaf!". The roar from the mall outside is making you dizzy and as you glance at the note you just wrote, you remember you are Deaf! You thrust the note at the orangutan and his boss while ripping the plastic daemons from your ears. The manager reads your note and write back "Do you have an airmiles card?". With a look of sheer disgust you realize what you just went through to be asked if you have an airmiles card. You shake your head, violently shove a credit card the orangutan, take your purchases and run. You renter the mall and jump into the current, swimming against it. You enter the next store only to start the process over again.

So now, what do I like about Christmas? I think it would be the reunion with friends that are dispersed across the world at University. Sitting around a table at our favorite cafe debating politics, philosophy, and anything else we can thing of. It's making those new memories that will keep you going through the winter semester, that is what I like about Christmas!

Jenny

Monday, December 1, 2008

Blog Topics?

Hi Everyone,

I have been posting in a different style lately and my focus has changed to more Deaf issues rather than the world of my ears. Today I am going to step back into the world of my ears for a moment, but I do have a question for all of you who read this blog. What do you prefer? What do you want me to write about? I am open to any topic suggestions, questions, anything! Let me know!

In the last week womens voices have become incredibly annoying. I hate listening to women speaking and they sound like "chipmunks on helium". I noticed it first when one of my interpreters was voicing for me, then again when I was talking with my accessibility services person, and then again with my audiologist. They all sound strange! Not to mention my own voice.

I saw my audiologist about it today and she couldn't figure out why. I hope she can, I want it back to normal. It is most annoying because I know some people by voice but now they sound different. Sigh. We'll see what happens!

Jenny

Sunday, November 30, 2008

'Terp Talk

Hello one and all,

I think one thing that all Deaf people realise, if only on a sub-conscious level, that we are forever reliant on interpreters. As a result the inevitable ‘terp talk’ ensues often within the Deaf community. We talk about our favorites, share horror stories, promote the good ones and destroy the reputations of the bad ones.

The fact that a persons career can be destroyed by this community conversation is somewhat distressing but at the same it is in a sense quality control coming straight from the consumer. Any decent interpreter is very aware of this screening process and tries their best to remain on the favorites or good interpreter lists. I have no doubt that this can be hard to do because each Deaf person has a different preference, signing style, expectation, and personality.

A good interpreter who doesn’t want to end up bashed by the Deaf community must be versatile and willing. They must accept feedback openly and be willing to modify their interpreting to please the client. They must have strong ASL skills and strong interpreting skills. I think in general the Deaf community is welcoming to newer interpreters that aren’t as strongly skilled, but the interpreter must be aware of this and only work within their means. Deaf people expect confidentiality, respect, and impartiality. I believe these are well known, common expectations for interpreters.

My own personal expectations are slightly different. I am little more relaxed with somethings depending on the interpreter. I don’t mind if the interpreter has an opinion as long as they don’t express it in just any situation. One example I have happened after a conversation with a TA. I spent a long time trying to explain my point. I tried voicing for myself, signing, examples, everything and the TA couldn’t grasp what I was trying to explain. I left the conversation frustrated and confused. The interpreter and I walked out of the building together and she asked if she could step out of her neutral spot for a moment. I said it was fine and she assured me that I was clear and that at least she understood the point I was trying to make.

I expect interpreters to respect my choice to sign or voice for myself. I know some expect me to pick one and stick with it but as the situation changes my personal preference changes too. I expect communication. If the interpreter isn’t comfortable with a certain situation, if they are unsure of what I am trying to express, if something is bothering them, I want to know.

The interpreter/Deaf person relationship is a complex on. The Deaf person is essentially both the consumer and the employer, yet the interpreter has significant power. It is definitely an interesting situation for both parties. I think in order for the this intricate relationship to be successful there must be trust and understanding from both the Deaf individual and the interpreter. Personally, there are 2 interpreters I trust enough to use in virtually any situation. One of them is my preference for classes and meetings, the other is my preference for more personal things such as doctors appointments.

I trust these two interpreters because I can communicate openly with them. I know they are strongly skilled and I trust them to voice for me. I also know both of them well enough to know when I should be speech reading them to make sure they understood what I am trying to say. When the ‘terp talk’ comes up I make sure to promote both of them, although they don’t really need my promotion as they both have strong reputations regardless.

One of my first interpreter experiences here in Toronto was quite negative. This specific interpreter was unwilling to accept my feedback and modify his interpreting, he was expressionless and appeared to be bored throughout the entire assignment. Few people in the Deaf community are familiar with his name and now I know why. He was ‘black listed’ a long time ago.

In some ways I find it to be unfair that interpreters can’t discuss the Deaf people the encounter. Some Deaf people are horrible to interpreters and I have seen it first hand. I try my hardest to empathize with interpreters as I also am in a service related field as a support worker. There are obvious differences in my job and theirs but the same fundamental issues persist through both professions. With this I try to be a good person to work with. I want the interpreters to enjoy working with me and I want them to want to work with me. There is no lack of interpreting jobs for strong, skilled interpreters. They could easily turn down anything I ask them to do for me. They are providing me with a valuable service and access to equitable communication with my hearing peers. For that I must be grateful. I know at any moment my preferred and favorite interpreters could decide they don’t want to work with me anymore.

Interpreters and Deaf people walk a fine line together and I think the key is finding out how to balance on it without falling off either side. I think it is just as much the responsibility of Deaf people to do this as it is the interpreters. I am sure there are Deaf people out there with apposing perspectives but this is my opinion.

That is all for tonight!

Jenny

Monday, November 24, 2008

Respect

Hi Everyone,

Today I want to talk about respect. I gave a workshop to a group of support workers on this topic this morning and some of their questions left me baffled that these people were working in the field that they are. It also got me thinking about respect in my own life. Respect can mean many things. In my life I see it in respect for my communication preferences, respect for my identity, respect for my body, and respect for my choices.

My communication preferences differ depending on the situation. Sometimes I will speak and speech reading, sometimes I will use interpreters and ASL. Even with an interpreter present I may choose to voice for myself, or I may choose to speech read the speaker. I am very shy about using my voice but I will from time to time. When I have the same interpreter with me for most of the week I need to be sure that they will respect my choice depending on the situation. I know that some interpreters are not flexible and want me to choose. I am lucky that those with me on a regular basis respect my choices depending on the situation.

This same respect for communication preferences extends to the Deaf and Hearing communities as well. I expect the Deaf community to respect my choice to speak sometimes, and I expect the Hearing community to respect my choice to sign. When I make a communication choice it is because it is the best one for me in that situation.

My identity is Deaf. I am not hearing impaired, hard of hearing, hearing, or anything else. I am Deaf. Period. I again expect both the Deaf and Hearing communities to respect my identity. I am sick of being asked if I am “Deaf Deaf” because I am new to the Deaf community here. I am sick of people insisting on calling me “hearing impaired” in the Hearing community. I am Deaf. That is me. Respect it.

I expect people to respect my body. I don’t like it when people throw things at me, or tap me insensately. I expect people to get my attention in a respectful manor. If I go to a doctor or medical professional I expect them to only do required tests and procedures.

I expect respect for my choices. My choice to not get a cochlear implant, my choice to speak or sign, my choice of school, my choice of job. I know what I need better than anyone else and I demand that people respect these choices. Not only those choices but any choices I make in my life. It is my life and I am making these choices for a reason.

The biggest lack of respect I see in the support worker community is the respect of identity. Today I could not get the group to call me Deaf because to them I was a “person with a hearing impairment”. No, I am Deaf. Respect the individual. Please.

G'night!

Jenny

Friday, November 21, 2008

Purple Hearing Aids!

Hey Everyone,


This is mostly for Alicia because she has been bugging me for pics since I told her I was getting purple hearing aids! So...here they are!

I got purple Phonak Naidas today!

Tuesday, November 4, 2008

Lessons Taught By The Unexpected Person

Hi Everyone,

I want to talk about the unexpected lessons we learn in life. I know everyone has been taught something amazing by someone who you would have never expected it from. My lesson came from a 13 year old deaf girl with Down Syndrome. For confidentiality reasons I cannot say her name but we will call her Erin for the purpose of this story.

I first met Erin in July. I was working with a young man at a summer camp that she was attending as well. From observing her I knew she was having a hard time communicating and as a result she was acting out. Erin would run away from the camp staff, take out her hearing aids, hit people, and generally displayed defiant behaviour. I wasn’t working with her so I only had very slight exposure to her but I used that to try to talking with her support worker about improving Erin’s situation. Her worker was very set in her ways but did take some of my advice, but Erin showed no improvement in her behaviour.

I was only at that camp for two weeks before moving on to another setting with another client. I forgot about Erin until I received an email from a coordinator of mine from work. The coordinator emailed me to see if I would be interested in providing support for a young deaf woman with Down Syndrome. I talked with the coordinator briefly before agreeing to meet with the family. When I found out the young woman was Erin I was intrigued.

A few weeks later I went to meet with Erin’s mother to discuss what kind of support she was looking for. Her mother explained that she wanted tutoring support as well as language development. The goal was to get Erin signing and able to communicate. I jumped at the opportunity and agreed to work with Erin without hesitation. I knew she wasn’t the girl I saw at that camp and I couldn’t wait to find out who she actually was.

The following Thursday I started with working with her. I am not going to lie, it was a challenge at first. Erin put me through my paces to see what I was capable of. She threw every test that she had at me but quickly she learned that she couldn’t win. Very soon after that I saw the real Erin. She is the sweetest girl I have ever met and she had thirst to communicate.

I started signing with her trying to build up her vocabulary. We would sit at a desk and go over books and sign different letters and different words. We would watch T.V. and I would talk to her about the show and use Sign to do it. I could see her trying to figure this out. I knew she wanted to.

Her mother was a little protective but slowly I convinced her to let me take Eric places. We started with a trip to a farm. Erin loved every minute of it. We talked about the animals we saw, especially the chickens since those were her favourite. It was on that trip to the farm that I first saw her language skills starting to blossom. I could see her making connections between the signs she was learning and the things we were talking about it. By the end of that day she knew that when I signed “chicken” I was talking about the chicken.

Soon after that I started going to a gymnastics class with her. I wasn’t sure how she would do at the class, or if she would enjoy it. I was also quite unsure of my role in the class, but I knew I would let Erin decide that on her own.

We arrived on the first day about 10 minutes early. We went in and watched some of the class that was happening before hers so she could see what to expect. I introduced myself to the teachers as a support worker and let them meet Erin just before warm up started. When I turned around to introduce Erin she wasn’t there. I looked around the gym and found her sitting with the rest of the kids in her class in the warm-up spot. She blended right into the group and was sitting in a circle with a few other girls. They were all talking and laughing and Erin was laughing along with them.

I stood and watched as the teacher went over and started to lead the warm-up. Erin stood up and followed her peers to the best of her ability. She has some difficulty with her gross motor skills but other than that she looked like part of the group. I knew that she couldn’t hear a thing in the large concrete box of a room she was in but you would never be able to tell.

Warm-up finished and the group split off into smaller sections. I read the teachers lips and waited to see Erin’s name and led her to her group. We started off on the beam and none of us knew how Erin would do. I stood with her in line while she watched the other kids have their turn. When she was up she climbed up onto the beam the same way all of the other kids had. She stood up and gestured for the teachers hand. She grabbed her hand and walked across the beam. She watched the other students intently between her turns and simply did whatever they had.

From there we went to the vault. Erin watched what the other students were doing and noticed that ever student did something different. She ran and got up onto the vault. She stood up and looked to her teacher for instructions on what to do. The teacher gestured a star jump and Erin did a star jump. I was amazed that this was the same girl I had seen at the camp just months earlier. As the weeks progressed I started to understand Erin better and better. We could communicate without any problems and I was in awe her achievements.

However, the real lesson came from Erin. Watching her with her peers at gymnastics amazed me. With her limited language skills she had managed to achieve something I have never been able to do. She could blend in with her hearing peers and make it seem like the most natural thing in the world. Watching Erin and how she communicates has taught me more about being a Deaf person than anyone else ever has. She has shown me how to overcome social barriers with an ease that I have never seen before.

Erin has taught me that regardless of hearing status, language skills, and another difference you can still overcome every barrier. More than that, she has motivated me to try. Now, in situations when I would normally give up, I stick around to see what might happen. Erin has inspired me more than I ever thought anyone could. I owe a lot to her right now, especially my drive to find Deaf access at my University.

Jenny

Deaf Access

Hi Everyone,

I have had a very hard time with this post. There is a lot that I want to talk about but sometimes I am not sure where to even begin.

Sometimes I feel like my life is a rollercoaster - and it’s broken. It feels like I am able to slowly climb up that steep incline, only to be dropped backwards when I reach the top. My weekends are my peak, when I finally reach the top and then Mondays are when I plummet.

I have started to spend every weekend with my Deaf friends or Hearing/Signing friends. For the first time I want to go out and I want to be social. I enjoy it and I feel comfortable. I am not bouncing around trying to read lips, and I am not frustrated. Going out is fun and I finally understand why my hearing friends enjoy it! I become a confident person and I find myself doing things I have never done before in my life - like introducing myself to people. It is amazing how I evolve on weekends, by Sunday night I feel like I am on top of the world.

Then Monday comes. Today was a particularly hard fall when I woke up to an email from one of my professors. The email was to explain that in two weeks there will be video clips used in class. He told me I didn’t need to be there for this as there were no subtitles. I emailed him back and explained that most DVDs are CC encoded and I could explain how to check. What I received back from him shocked me, he explained that CC are too distracting and i would clutter the screen. He would prefer it if I watched the videos alone at home. I am furious about this response. I sent him another email and provided an analogy of saying that the ramp provided for students who cannot use stairs is too distracting for the students that can use stairs.

I still haven’t heard back from him.

This is only one of the many issues I have regarding access at my University. I am really appalled that no one here understands the concept of Deaf access. They seem to think that because I have people that follow me around and wave their arms all day (interpreters) that I am good. I need more than the “arm waving” to be able to access the classroom, I need CC for video materials, I need visual supports, I need proper lighting, I need one person to speak at a time, I need a copy of all written material (such as handouts for group work where they may only give one per group), and I [and the interpreters] need a break if it is a long lecture.

Then there are the issues involving interpreters. I need my timetable early enough to be able to book interpreters, the use of interpreters needs to be explained to my professors and TA’s, and there needs to be a willingness to learn and ask questions from all parties.

I didn’t think any of this would be hard for people to understand - apparently it is. I am fighting as hard as I can and putting as much of me into it as is physically possible. It still is not enough. I am a strong advocate and activist but I am starting to lose my strength. I feel like I am fighting for the same thing everyday and yet getting no where. Once I break down one wall another one is quickly put up, maybe in a different location but it still blocks me from getting through.

Thankfully I have a good deal of support from a few different sources. My audiologist will always write a letter for me, if I need it, explaining the implications of my hearing loss, the person who helps to book my interpreters is always willing to help me in anyway she can and always provides me with tons of moral support, and a good Deaf friend of mine is great at sharing her experiences and helping me to network. Even with that I still feel defeated some days.

I have emailed the head of Access Services at the University to see about proving a professional development opportunity for professors and TA’s around Deaf access. I have a few ideas and I hope that they will back me up. I want to see a Deaf population at the University. To start that development access needs to be improved and the University must prove itself to be Deaf friendly. I am going to continue to fight and advocate for Deaf rights but until I see marked improvement I am going to ensure both the Deaf and interpreter communities are of the inequities I am facing.

Jenny

Wednesday, October 29, 2008

Audiologists

Hey all,

I want to continue my thoughts on audiologists today.

I mentioned yesterday that there have only been two in my life that I have actually respected. I would like to tell the stories of how I came to respect each of these audiologists.

The first one, S., was one of the audiologists that worked in the hospital based clinic in the town where I grew up. She was Deaf herself and very stubborn. There were 4 audiologists there at that time, at least that is all I can remember. I was bounced between them because I was a horrible child. I would bite them, hit them, kick them, and eventually it got to the point that S. was the only audiologist who would work with me.

I was 7 or 8 and it was time for my yearly hearing test. My mother brought me, all prepared for a huge fight complete with kicking, screaming, and biting, but this year I had a different tactic in mind. Both S. and my mother were surprised by how calm I was. They brought me into the booth, S. stuck some head phones on me, and then when out to start the test. I heard the beeps but I refused to respond. They put me through the entire range of hearing tests but I just sat there. They knew I could hear at least some of it and S. arranged for my mother to come back again the next night to try again.

The following day a similar scene played out. I sat there through the beeps, the “Say the word baseball”, “Say the word sailboat”, “Say the word ice cream”. I never once responded. S. was ready for a fight. She wasn’t going to back down or hand me off, I think she saw me as a challenge. S. instructed my mom to come back the next evening. Again, the same thing happened.

This continued for 15 consecutive business days. The 15th attempt rolled around and I think they decided to get one of the other audiologists to stick around and help out. The other audiologist did the testing and S. came into the booth with me. She tried to coax and bribe me into responded. I gave her what she wanted and I responded, but not always to the first sound I heard. Whenever I would get annoyed by her bribing and coaxing I would kick her, hit her, pull her hair, whatever seemed easiest. The audiologist charted these responses and that audiogram is quite funny looking. It kind of looks like a bold of lightning going across the graph.

The 16th day came around and it was back to just being S. and I. Again, I sat there. Finally on day 17 I realised S. wasn’t going to give up on me and I responded to the beeps and did the test. After that day S. never had a problem with me again. I dealt with her, and only her. I respected her for sticking it out with me.

The second audiologist, E., is the one I am currently seeing. Much like S., it took E. some time to earn my respect and trust. It certainly wasn’t as big of a production as it was when I was 7 or 8, but it certainly took just as long.

I remember the first little while with E. I thought she was a bit patronizing and condescending and she is young too which scared me a little bit. E. got her share of tests from me too, although they were not in the form of hitting, biting, kicking, or screaming. Instead I played stupid. I acted like I didn’t know how to read an audiogram, how to put in an earmold, how to change the batteries, and so on. She continuously gave me all the right answers. Quickly I had nothing against her, other than the fact that she is an audiologist.

The day that E. diagnosed that my hearing had dropped drastically was the first time I started to respect her. I was so impressed with the way she handled everything and how calm she was as she explained my hearing had dropped close to 30 dB. I don’t think there was anything she could have done differently in that situation. From there she started to earn my trust. I don’t think there was one concrete moment when I started to trust her though. It is something that has developed over the past several months.

She has earned my respect and trust not only as a person but as an audiologist. She accepts that I use Sign, and that the Deaf community is part of my life. She sees the importance it holds for me now and has never once tried to talk down to me because of it. She also respects me, and lets me choose how I want to handle my hearing loss. I know she would rather me wear my hearing aids all day everyday, but she knows it isn’t going to happen, so she doesn’t bother me about it. It’s the little things like that which make the difference.

What I am getting at here is that it is fairly simple for an audiologist to respect their patients and their wishes as long as it isn’t doing them harm. I say that with caution because I know many audiologists feel that ASL and the Deaf community are doing me harm. The fact is, I am an adult. It is up to me to make my own decisions regarding communication, and my life. Having an audiologist that respects that and even goes as far as understanding that makes a world of difference for me. Why can’t more audiologists see that? It’s my life, not theirs, I am going to live it how I want and they might as well support me in those choices to the best of their ability.

Jenny

Monday, October 27, 2008

More on identity

Hi everyone,

I have continued to think about identity for the past few days and how it impacts us. There are many parts to my identity but how do I prioritise it. Sometimes I wonder what should come first. How do I decide what should even be included in my socialized identity? Normally I identify as a young Deaf queer woman, in that order too.

Young, why does it get to come first? It is certainly not the most important, or even a remotely important part of my identity. I suppose it holds more importance if you were to read a bio on me. I have done a lot in my life for an 18 year old. That is the only time when ‘young’ seems to be a significant part of who I am, when I am flaunting it. No, flaunting it isn’t the right word. When I am proving myself seems better.

Deaf, now that is important. Deaf is more than just part of my identity, it is my communication needs. Communication is paramount to success in our world and by highlighting the importance of ‘Deaf’ in my identity you also highlight my communication methods and needs. I use ASL, I speech read, I speak (but not like a Hearing person) and I use more visual information than others. ‘Deaf’ is also one of my cultures, my friends, and where I feel comfortable.

Queer, I suppose this is important. ‘Queer ‘used to hold much more significance in my identity than it does now. My life used to revolve around ’queer’ ! When I first moved to Toronto I didn’t even speak to straight people. This wasn’t intentional but that is how it ended up. I segregated myself within this community that I felt comfortable with. For the first time it was okay for me to be queer. I wasn’t ridiculed and I felt safe. I embraced ‘queer’ as much as I could. Now, a year later, I am not sure how important it is to me. I definitely am still heavily involved in the Queer community but it is starting to take a different shape now. I no longer feel a need to have queer friends and community for strength and support. They are there but they are just people. There are new young queer people, who are just ‘out’ and ready to fight. Don’t get my wrong, I will still fight when needed but I am no longer militant about it.

Woman, this is a tough one for me. I am a feminist and will openly proclaim that. I am involved in the feminist movement and I will fight for womens rights until the day I die. How important is my female identity to that though? I realise that is a dangerous statement for me to make but it is the truth. My female identity changes by the day. I used to identify as more ‘gender queer’ than female, though I am not as fluid in my gender expression as I was back then (certainly not to the point that I identify as ‘gender queer’) I don’t always feel as though the label ‘woman’ is true for me. Today it is part of my identity, but not as much as it was on Saturday.

Those four parts of my identity ‘Young’, ‘Deaf’, ‘Queer’, and ‘Woman’ are only that, parts of my identity. They are not the only parts of my identity either. There are certainly more but for some reason they get left out of my brief synopsis of who I am. ‘Young Deaf Queer Woman’ certainly defines me as the media, and activism communities see me but that isn’t me. Sometimes parts of it get dropped too. When I am doing Queer rights work, Deaf often gets dropped from my list. Rarely by my choice, normally it is done by the media, for some reason it becomes unimportant.

The previous paragraphs were really a lengthy introduction to a concern about Deaf identity. There are millions of people in North America with hearing loss, yet only a marginal few embrace their hearing loss as an identity.

I am reading a book right now called “Deaf Sentence” by David Lodge. It is about an older retired man who is very hard of hearing and how it effects his life. The main character, Desmond, considers his hearing loss to be a very negative thing. At one point in the book the main character comments that he has no idea who could find anything good about hearing loss. This got me thinking about why all people can’t embrace it as part of them.

There is certainly a negative stigma attached to hearing loss. There is a fear of being noticed and not ‘passing’ as a hearing person. There is the fear of someone noticing the rather large, awkward, plastic things encasing your ears. There is the constant use of the phrases “What?” ,“Pardon?”, and “Sorry, I missed what you said.”. There is the occasional isolation when you are surrounded by Hearing people who are talking and you have no idea what was said. Yes, hearing loss can be negative, I won’t deny that. It can also be positive too and very few people see that.

There is an entire community rallied around the fact that sometimes peoples ears just don’t work at full capacity, or at all. There are people who are proud to be Hard of Hearing and rally together because of that. There are people who are proud to be Deaf and rally together because of that. There are groups where Hearing, Hard of Hearing, and Deaf all overlap because of a common language, ASL (or another Sign Language). With this community out there, and readily available, what stops people from embracing it? There is no one answer to that question but I would like to attempt to provide a few different ones.

One obvious answer is age. Many people end up with hearing loss later in life. At this point they are often well established with a social group and feel no need to seek out a new one. This is the only reason I am not going to criticise. [When I say criticise I do not mean that all other peoples reasons aren’t valid but this is simply one I am planning to leave alone].

I would like to propose that audiologists create this segregation between the social/cultural model of disability (capital ‘D’ Deaf) and the individual model (lower-case ‘d’ deaf) . Not to say all audiologists do this, or that it is even a conscious action on the part of the profession. When someone goes to an audiologist they are normally going because they are having difficulty hearing. The audiologists does some tests, finds that the person does indeed have any degree of hearing loss, and then they set out to “fix” them. Sometimes that means hearing aids, cochlear implants, or ENT referrals. While I have nothing wrong with “fixes” they are mostly temporary solutions, and they rarely actually “fix” the problem. They are more like an annoying band-aid that keeps falling off.

Audiologists see people with hearing loss as something that is broken. They see me as someone who is “hearing impaired”, not as someone who is Deaf. They tell me that my quality of life will improve with cochlear implants and I will have more opportunities. Who are they to judge me! Audiologists are experts on hearing loss, not lives.

I would be curious to know how much training and information about hearing loss as an identity and the Deaf and Hard of Hearing communities audiologists are given during their masters programs. To me that should hold great importance for the profession. I don’t care if some audiologists will only encounter a few Deaf people in their practice, there are still that few and there needs to be an attempt to learn and understand us.

I have a feeling many Deaf people view audiologists the same way as they do interpreters, a necessary evil. I do at least. Here is the difference though, interpreters try to understand and respect us. They see our hearing loss and communication differences as our identity and culture, not our disability and not something they are there to fix. Well, some interpreters might not but the Deaf community would reject them pretty darn fast.

I think it would be great if there was an opportunity to bridge the gaps between audiologists and the Deaf community. Perhaps someone who would speak to audiologists and do education sessions on Deaf culture sensitivity. Clinics could have someone come in to speak with their audiologists about Deaf culture and how it overlaps with their profession. Give them tips on how to be sensitive to the specific needs of this community and provide them with extra resources.

I am not going to blame it all on the audiologists. The Deaf community likes the call them audists and them move on. Yes, many of them are audist, but what are we doing to change that? Education and advocacy are the keys to changing things like this. We need to battle audism within the field, not just point it out. One way of doing that is making ourselves heard through education. Perhaps it is a silly idea, perhaps it has been tried, but there is still a massive problem and we shouldn’t stop fighting for the respect our identities deserve.


Having just said all of that I will acknowledge there are a precious few audiologists out there that are respectful of Deaf identity and culture. I have met two in my life time and one of them was Deaf themselves. I didn’t like her at the time because I was about 7 or 8 and she was just as stubborn as me. She won all of my battles with her and it made me mad. I respect her for that now though. The other one is Hearing, but willing to learn and listen. That is all I want, a willingness to learn and see me as the person that I am. Not as something broken that needs to be fixed. I have been doing this long enough that I know what needs to be fixed, and I will tell them what that is. I know that thing isn’t me though, so back off and let me be Deaf!


Jenny

Saturday, October 25, 2008

Hearing Person Repellant - It Failed!

Hi Everyone,

This afternoon I was walking around downtown and one of those volunteers trying to fundraise for SickKids was on the side of the street. They flagged me down, desperate for someone to pitch to. Other people ignored them but I decided I would at least do the "I'm Deaf" thing. So I pointed at my ears and said, "I'm Deaf". Then, they sat their binder down and gave me their whole fundraising pitch in ASL...

Jenny

Thursday, October 23, 2008

Identity

Hello again!

If I were to remove myself from my body, step back, and take a long hard look at the choices I have made in the past I would see that my entire life has been spent sheltering my identity. As a young child I knew that I was different. For starters I had to wear funny things in my hears that other kids did not have to. I understood that this meant I was ‘broken’ because they were there to ‘fix’ something. At the time I did not really understand what was being fixed. I eventually came to realize that these lumps of plastic were in my ears to help me hear; I was Hard of Hearing.

Once this became clear for me I was able to reject it full force. When I turned 11 and found out that the following year I would be going to a new school, in a new town, with all new people, I made the choice to not wear my hearing aids. Some how, at the age of 11, I had come to know that Hard of Hearing was not a normative identity within society. I had been taught that some how it meant that I was ‘broken’. I did not want to be ‘broken’, or known as the deaf kid anymore. I just wanted to be me.

After long fights with my parents, my audiologist and my ENT I finally won and was allowed to stop wearing my hearing aids. I think that the financial implications of replacing all of the hearing aids I had flushed down the toilet, or let the dog use as a chew toy were starting to take their toll as well. So at the ripe old age of 12 I took my Hard of Hearing identity and threw it out the window in hopes that I could assimilate myself with Hearing society.

6 years later, at 18, I started using hearing aids once again. My hearing was changing and fast, though no one recognized this - not even myself. 3 months after I started using hearing aids again my hearing plummeted. Whatever benefit I was getting from them before was gone. I had spent 3 months trying to adjust to sound that I was losing. I don’t know how to appropriately explain my feelings at the time that my hearing dropped. I think I was initially relatively calm. I knew exactly what had happened when I showed up at my audiologists office and told her that I couldn’t hear anything with my left ear. She did the tests and told me the results and then I was spent the day bouncing between three different hospitals trying to see an ENT. I finally saw one, they told me the loss was permanent and I should get a CI. I made my way back to my audiologists office at the end of the day and that is when I started to freak out.

I had known for over 24 hours what was happening, what had happened, but it took that long to sink in. It was when I was sitting with my audiologist talking about cochlear implants that it became real. The doctor saying it didn’t make it real, I didn’t know him, I didn’t trust him, I didn’t care about his opinion at all. I trusted my audiologist though, and I respected her and her opinions. That is what made it all real for me. All of this information was coming from a real person who I knew.

I won’t say it was smooth sailing from there. I had spent years training myself to reject this part of me, and now there was no escaping it. I had Deaf friends and I continued to use Sign throughout those 6 years but only with them - it was part of their identity, not mine. Rediscovering my identity, as it was defined by hearing loss, was a challenging road. At first I refused to use interpreters. I was even looking into going to University without them. I tried to convince myself that my hearing aids were helping and I was understanding speech with them. It wasn’t happening though, I could barely understand any sound I heard. I tried to fake it through group situations, board meetings, fundraisers, work events, and I failed.

It wasn’t until May that I started to see that ‘Deaf’ as an identity may not be so bad. I was being sent to a few conferences for work and I requested interpreters for them. After just one day with interpreters I was wondering why I had tried to fake it for the past few months! For the first time in a while I realised that maybe I could actually be on an equal playing field with my hearing peers. The key to make this happen was not equality, but equity. In order to achieve this equity I needed to embrace my identity. Over the next several months I saw many changes in my attitude and my life. I stopped trying to hide my hearing aids and my hearing loss. They are both a part of me and I acknowledged that for the first time in a long time.

As I became more comfortable I started to make connections with members of the Deaf community here. I met a wonderful Deaf woman who became somewhat of a mentor for me. She has a very similar background to mine and she immediately started to help me discover the community here. She has taught me, more than anyone else, what it means for me to be a young Deaf queer woman. Without her I don’t think I would be as secure in myself as I am today. It is with her guidance and support that I am in University now and doing the things that I am. She taught me it was okay for me to stand up for Deaf part of myself.

I have always been very confident with all of the other parts of my identity. I never had an issue standing up for myself as a queer woman, so it really bothered me when I had a hard time with doing that for the Deaf part. I think part of the problem is the Deaf community itself. I don’t want to offend anyone, but WOW! The Deaf community is hard to break into! I needed to earn my acceptance and was it ever hard. After several months of sitting on the edge, somewhere between the two worlds - Deaf and Hearing - I finally feel like I have fallen into the Deaf one.

This evening I was at a meeting with about 8 or 9 other people, all Hearing. We were sitting around a large rectangular table and I positioned myself in a place where I thought I could see everyone. Immediately there were some flaws in my plan. First one man had quite a long beard, another one had a moustache, two people stuttered, and no one was looking even remotely in my direction. Now, these are all people that know me and I think they sometimes get caught up with how well I can function 1-1. I tried for a few minutes to speech read but I was so tired that after five minutes I gave up. I didn’t feel defeated though. I just recognized that this environment was not set up for me and it was beyond whatever speech reading talents I possess. I moved on and decided that for the next meeting I would ensure I booked an interpreter. I am sick of trying to adapt myself, I will to an extent but if it is going to cause me a lot of frustration - no thank you.

I think what I am trying to get at is that now, more than ever, I feel like a capable Deaf person. I feel like I am accepted by the community, I have rights as a Deaf person, I have a language as a Deaf person, and I have a voice as a Deaf person. I am able to stand up for myself, my identity, my culture, and my community and know that there are people who will stand behind me 100%. I have become someone that I am proud of and I am ready to show the world that person. I know that sounds horribly clichéd but it is true. I am finally secure enough in who I am to show it. I am ready to call other people on their inequities and attempt to make change. I am more than ready to prove every single person who told me I can’t do something wrong. I don’t know what opportunities lay ahead but I know that there will be many. I have made it my mission throughout my life to break down barriers and I am going to continue. I am ready to watch where my life as a young Deaf queer woman will go!

That is all for tonight,

Jenny

Saturday, October 18, 2008

Hearing Person Repellant

Hi everyone,

I want to talk about a common phenomena that I have observed many times over the past several months. This phenomena doesn’t have a name, at least I don’t think it does, so all I can do is describe it.

It is the thing that happens when you are at a store checkout and the cashier is chatting away and you have no idea what they are saying or if it is important. You stare at them blankly for a minute, and slowly you say “pardon me?” The voice tips them off that English is not your first language. They repeat it slower and you still miss a lot. At this point you say “I’m Deaf.” Maybe sign it too. Then you look at the persons expression, they look like a deer caught in headlights. They look around nervously, and gesture violently. You tell them “Please, just write it down.” You may even offer them a piece of paper and a pen to do so. They smile awkwardly and maybe jot down the price for you, and ask if you want a bag. Then they stare at you, smiling awkwardly still. You pay, they continue to smile awkwardly and gesture violently as you leave.

After discovering that this was almost always the reaction I decided to make it work for me. A few days after this realisation I was walking downtown, on a very main street. On the sidewalk there were those people that try to fundraise for an organization, like Greenpeace, or a children’s hospital, the ones that wear a funny looking oversized vest and hold a binder with the name of their organization and it’s logo on it. They stop people as they walk past and try to convince them to donate their money. Sometimes they are very aggressive and chase you several feet while they yell information about their organization at you.

I was waiting for the light to change so I could cross the street and one of these fundraising people started talking to me. I looked at them said “I’m Deaf!” and pointed at my ears and gestured that I was Deaf as well. The girl did just what I expected. She got a nervous look, panic stricken almost, her glance shifted from side to side, she clenched her binder so tight her knuckles turned white. Her eyes caught mine once again as she threw the awkward smile on. I couldn’t hear her but I could tell she was giggling nervously. She looked around once again and apparently found her escape route that time. She said something that I didn’t catch because of her extreme enunciation and hand gestures. Then she ran away. She actually jogged through the crowd away from me.

Now, sometimes this “hearing person repellent’ is great. It can provide me with hours of entertainment, as I watch people crumble in fear at the prospect of non-verbal communication. But, sometimes it is the worst thing in the world. It is a horrific feeling when your peers are afraid of you. When your peers don’t know how to communicate with you and therefore treat you with an awkward distance that clearly marginalizes you. I am not saying that is all my peers. I know I could be doing more too. I am a shy person in those situations, and I realise new social situations are awkward for everyone. However, I don’t think I should need to go out of my way to prove myself to my peers. I treat them just like I would treat anyone else. That is all I want, to be treated like the rest of my peers, by my peers.

I do acknowledge that equitable treatment is required in some situations, but that is already in place within my classes. I already have interpreters there to bridge communication gaps, I don’t need anything extra from my peers. That means that when we are doing group work I want to just blend into the group like anyone else. When I join a club I want to be able to participate like everyone else. That isn’t what happens though. There tend to be two common outcomes of those situations. The first one, and the most common, is that they ignore me. They treat me like I have the plague and my ‘hearing person repellent’ seems to be on full strength. The other common outcome is that my peers go out of their way to include me, and as a result make me stand out and feel excluded more than when they ignore me.

When they ignore me I can continue on with what I was doing before. I can pick up my BlackBerry and pretend to be busy. I can make myself look like I don’t care. When they try to hard it makes me feel oppressed almost. I know that may seem extreme but when they talk down to me, or always ask how I feel -- always trying to provide me with opportunity to speak it makes me feel like I am below them. I am not below them, and I do not need their permission to give my input. If I have something to say I will say it. I guess it is sometimes hard for my hearing peers to understand but I am a normal person. I just can’t hear and I communicate with Sign Language, not Spoken English. Those that take their time to get to know me know that I can communicate and cross every and any communication barrier placed in front of me.
While sometimes I enjoy being able to scare people away, especially when it saves me hours of my time because I don’t need to listen to lengthy fundraising rants. Most of them it is just annoying. The amount of time I spend with my hearing peers greatly outweighs the time that I spend wanting to repel fundraisers. If having peers that will acknowledge me means giving up my ability to repel unwanted fundraisers I would do it in a heartbeat. What does it take for me to be recognized as ’normal’ in society? Not even normal, I don’t want normal, I just don’t want scary anymore. I just want to be me, and I want people to accept that and see me. Not just “Deaf girl”. I embrace “Deaf girl” and I embrace all of my other labels and socialized identities, I just want other people to do it too. Embrace me as an equal member of society, treat me as an equal. I will take care of equitable treatment, and others will too, just focus on the equal part please - until I tell you not to!

That's all for today!

Jenny

Wednesday, October 15, 2008

Hi Everyone,

I have been pretty bad about blogging lately. The combination of school, work, doctors appointments, and everything else has been pretty tiring. I have also really discovered the Deaf community here in Toronto and as a result I have been out meeting, and networking, with people every chance I get!

I have also been distracted with writing other things. I wanted to write a detailed recount of the last several months. The last few months have been the most trying, humerouse, interesting months of my life. The people I have encountered have changed my life forever - sometimes by being my friend, sometimes by giving me life altering medical news, sometimes by presenting me with challenges I have no idea how to over come. Regardless the past months have been filled with emotional ups and downs.

Reflection has been a key theme in my last several blog posts. I think it is because the present is still difficult to process and the future is beyond predictible for me. I simply do not know where I will be physicially, emotionally, mentally, or medically next week, let alone next year! This can be hard for me because I like to plan. I need to plan. Without the ability to plan for the future I find myself stuck in the past.

While there are many things happening in the present for me I cannot comment on them right now. I need to give those things time to become history before I can truly look over them with enough consideration to write about them.

As life with my current hearing loss and hearing aids begins to settle I have begun to wonder if this blog is still relevant, if it is still interesting for people. I think now, more than ever, this blog is important. Now I am beyond the struggle, and the adapting period. I have moved on with my life and this blog is my opportnity to speak about that. To speak about how my life has evolved and continues as a result of my hearing. Being Deaf, as well as deaf, has greatly shaped where I am now and what my concerns, ambitions, and goals are. Without my d/Deafness I would be in a very different place, doing very different things. I would be fighting for different acceptance, and I would be presenting myself to the world in a different way.

I think looking at where I am now, I am happy that I am Deaf. I am happy I can't hear and the new opportunities that it has given me. That may sound backwards to some, but it is true. There are so many opportunities for me as a strong Deaf female activist and there are so many bridges to cross. My life is far from limited and I can see this blog evolving and the focus shifting. Perhaps now I will focus more on my life as a Deaf person, not my life as a deaf person. While the two aren't mutually exclusive the focus can shift, and I think it will.

I guess we will all just have to wait and see what shape this blog takes in the future!

That is all for now!

Jenny

Monday, September 29, 2008

"Bad Deaf Days", "Bad Hearing Days", and Wonderful Moments When It All Fits!

Hey Everyone,

I am taking a disabilities studies class right now and it is pretty neat. I am not learning a lot of new stuff yet but the class its self is really interesting. My prof is blind and he uses blind and deaf as examples for everything. Perhaps because he can related to the world of "sensory impairment" best. [call me hearing impaired and I may kill you, same thing goes for sensory impaired. I couldn't think of another word!]. One thing he talked about was having a "Bad Blind Day" and it got me thinking about my own life.

I have "Bad Deaf Days" and "Bad Hearing Days". I was even confused about how I can have both. When I speak of having a "Bad Hearing Day" I am referring to a day when my hearing was fluctuating, or my hearing aids weren't quite doing what I wanted. This weekend for example, it was a "Bad Hearing Day" after another. On Saturday I was out with a Deaf friend of mine at a film festival and I started off with my hearing aids on. I couldn't hear much and what I could hear didn't make sense. My hearing hadn't been that bad for a while so I just took off my hearing aids and experienced the evening in silence. When I say that, please don't interpret silence to be a bad thing. I was very content in my silence. I was surrounded by people experiencing the same silence and in that particular moment the silence was far from isolating. The silence drew us closer to one another. Even though it was a "Bad Hearing Day" it was a great Deaf day!

Sunday was much like Saturday and I watched my "Bad Hearing Day" turn into a "Bad Hearing Weekend" I woke up very early to go ride (horses) and I put my hearing aids on as I was driving to the barn. My car was pretty quite so I didn't notice anything at first. I got to the barn and once I walked in I realised that I couldn't hear very much, less than normal. I left my hearing aids on, mostly so the hearing people felt safe around me on a horse, and ignored what little sounds I was hearing. I took my hearing aids off the minute I got to my car and didn't think about them again for a few hours.

Sunday afternoon I had to go to a social event/fundraiser thing. I was the only Deaf person there so I put on my hearing aids and geared up for an afternoon of speech reading (something I really haven't done in a remarkably long period of time, here and there yes but not a whole social event) as I walked into the room full of hearing people talking I was overwhelmed. There was so much sound and I didn't know what to do with it. Without even thinking I reached up and took my hearing aids off, shoved them in my purse, and went about speech reading in silence. I didn't have interpreters on Sunday, no ASL at all. None at riding, and none at the event. I was in silence on Sunday, but that day it isolated me. There was no one else experiencing the same silence. There was no one for the silence to draw me closer to. On Sunday the silence was like a repellent. Does that make Sunday a "Bad Deaf Day"? It didn't feel like a bad day. I just accepted my fate and moved through the social situation with as much ease and grace as I could. Yes - there was some smiling and nodding, but it wasn't a bad day. That got me thinking about when I have had a "Bad Deaf Day". Immediately my mind drifted back to Friday.

Friday was by far one of the worst "Bad Deaf Days" I have had. It started at school with my first tutorial for English Literature class. The room was set up in a strange way. We sat around two large tables situated in the North and South ends of the room. Along the West wall sat the TA and my interpreter. I sat on the South side of the room but I couldn't get a good sight line of my interpreter and TA at the same time. It didn't help that the TA was wondering around the room while speaking. The most interesting part of the whole setup was the fact that the TA chose to write on the chalk board on the East side of the room, even though there was a chalkboard right behind him on the West wall. Regardless of what was taking place I could not access all of the visual information I wanted, or needed.

The tutorial got me a little bummed out but I reminded myself it was just the first one and there was plenty of time for improvements. I had an hour long break before my English Literature lecture and I spent the break sitting in a cafe with my interpreter while she ate lunch and prepped for the class. I was mostly texting my friend and just trying to relax before the two hour long lecture.

The lecture time rolled around pretty quickly and my interpreter and I made our way to the class. I always dread this particular lecture because it is in a dim lit theater, on a Friday afternoon. The dim lighting means I need to concentrate much harder to understand the interpreter. I still rely on mouthing and sign to understand and because of the poor lighting I cannot speech read and I am going on sign alone. I can understand it fine but it is draining and I am already exhausted from the classes earlier in the week. The first half hour is fine, but from there it goes down hill quickly. By the end of the 2 hours I was so frustrated and drained I didn't know what else to do but cry. I can't even speech read the professor because of the lighting and distance. My only hope to understand the lecture is to use every ounce of energy I have to focus on the interpreters.

After lecture was finished on Friday I went into my car and just cried. The crying led to an asthma attack, and eventually a trip to the hospital because I couldn't get my asthma under control. That was a "Bad Deaf Day".

The "Bad Hearing Days" rarely bother me that much. I can't really hear anyway, so what difference does it make in the end. I can't understand speech, I don't rely on my hearing, so not hearing isn't a big deal. The "Bad Deaf Days" are the hard ones for me to cope with. Those are the days when I go to bed thinking "I wish I wasn't d/Deaf", "I wish I didn't rely on interpreters", "I wonder if a cochlear implant would have been able to help me today".

Then, I wake up the next day and while I remember the day before I also think of the day ahead. There is always something to excite me about the day ahead. Maybe I am working with my favorite client, or I have one of my favorite interpreters for class. Maybe I am going out with one of my Deaf friends, or I am going horseback riding. In the end there is always something positive that replaced my "Bad Deaf Days". There is always a moment when I am learning a new sign, or understanding more in a conversation with a new person than ever before.

I remember sitting with a group of Deaf people in a restaurant on Saturday night and just observing. Occasionally I would jump into the conversation, but for the most part I was just taking it all in. Watching this vibrant community come together and come alive before my eyes. No one in that group knew everyone there before that evening. Everyone knew one or two of the people, some knew more than that, but there was one common element that brought us together. Deafness. This quality that I felt excluded me and frustrated me to point of tears the day before was now drawing us all together.

It is very hard to explain that feeling that I had on Saturday night. Overwhelming may be a good way to describe the emotions of that evening for me. I have spent the last three weeks fighting for acknowledgment of my identity and respect for who I am from my hearing peers at the University of Toronto and in that one moment all of those defences I had built up melted away. I forgot about the day before and frustrations.

Now I am left with a two options. I can either measure my life in "Bad Deaf Days" or I can choose to focus on those moments when everything just seems right. Those moments when it feels like the puzzle is complete. While it is easy to dwell on the negative experience I have encountered in my d/Deaf world but that is not how I want to live my life. I would much rather focus on those amazing days, those overwhelming days when everything fits so well I don't know what to do with myself.

One also must acknowledge that without the "Bad Deaf Days" the great ones would never exist. So what if I need to cry alone in my car to the point where I cause myself to have a severe asthma attack? I think we all need those "asthma attacks" every once and a while to remember to be thankful for the good.

Have a good night!

Jenny

Saturday, September 13, 2008

Hey everyone,

On Thursday I went to my audiologists but this appointment was a little different. This time there was a second audiologist there and she was a cochlear implant audiologist.

I had asked my audiologist about talking to a cochlear implant audiologist and she said that an audiologist with her company used to work in a an adult cochlear implant program. She called her and arranged an appointment for her to talk to me. I was skeptical going into it. I have been flip-flopping when it comes to looking into it for quite some time.

She started by telling me about implants, and that was okay. I knew a lot of that stuff before anyway. I don't know if I really learned anything new at the appointment actually. I don't even think I am any farther ahead in my decision now than I was before. It sucks.

I found the audiologist to be a bit disrespectful. She didn't respect the fact that I use ASL, and brushed it off like a non-issue. She seemed to think I didn't want to be using ASL, or associating with Deaf culture. She said I can tell you live mostly with hearing people, and when I said that I didn't so much anymore she said something along of the lines of "Oh, well that's not what you want". Who is she to tell me what I want!

She talked about how my quality of life will improve, how my life will be easier, how many more opportunities I would have. See, the thing is I don't think the quality of my life is poor, I don't think my life is hard, and I think I have every opportunity. Even my audiologist said that she doesn't think I have anywhere to go but up.

I don't need a cochlear implant and that is what is making this that much harder. I can do everything that I want to without one. If I decide to persue a CI it would be because I want it. I still can't see it as something that I want. Maybe sometimes I want it, but not even close to everyday. I may wake up thinking "If I could hear more..." once a week at most. I think it would have to be everyday, or pretty darn close, for me to say it is something that I really want.

I don't know what I want! Is that okay? Can I just not know for a while? Please!

Jenny

Sunday, August 31, 2008

Hi Everyone,

This post has a bit of a different vibe than the ones that preceed it. Today I have decided to talk about choices. Not just in my hearing but in my life.

I am currently at my parents house and I have been for 5 days now. Tomorrow I will be going back to Toronto and my Frosh Week at University of Toronto starts on Tuesday. One thing that I have been thinking about a lot lately is why did I choose U of T? Why did I choose Toronto? Why did I choose anything that I have chosen.

I find it kind of funny because I am a planner, I like to know everything that is happening well in advance. However, when it comes to decision making I always go by my gut instinct. I am always right and it has always worked for me in the past. Now I am starting to doubt myself. Is University of Toronto really the right place for me? I chose it because of the amount of options I have there, and it's location. I am also the only deaf undergrad there. If I had gone to York I would have had a thriving Deaf/HOH community and an amplitude of supports. For some reason though, I chose U of T.

Cochlear implants. That is another choice I made. I decided not to go through with it, not even the testing to establish my candidacy. I chose that because music is so important to me and I need to be able to distinguish tones that are very close together. I have been told that is not possible with a CI. This past week I was out with some friends and the frustration of being with a large group was over whelming. I couldn't handle it and I did not know what to do - so I left. I am also thinking ahead to tomorrow morning when I have a riding lesson. I know I am not going to get anything out of it, but it makes my coach happy to see me riding around the ring for an hour. I have avoided having a lesson for a few months but I promised her I would while I was home this week. Last time I had a lesson I was able to follow along and understand her very well using my FM system but now I can't. I am not sure what I am going to do, or how it is going to work. Then again, how do I know a cochlear implant would enable me to do those things?

My choice to stay in Toronto, now I don't think I regret that one. I love the city and I thrive there. For the first time I am in charge of my life. I am in charge of my medical care - and believe me that is a bigger deal than it may seem. I have a wonderful audiologist, and some decent doctors. Should that really be my motivation for staying in a city? I think part of my motivation is my sheer determination to prove my independence and my ability to function as an adult. To prove that I no longer need someone to take care of me. To prove that even though I am deaf I can lead a completely normal, full, adult life.

Really, who is to say if my choices were the right ones? I have been thinking a lot, about all of these choices, and I think that more reflection and research is required on almost all of them. I think now is the time to embark on that next portion of this journey. Now begins my time of reflection.

Jenny

Sunday, August 24, 2008

Hey all!

I go tomorrow for my music adjustments! I am so excited! I am hoping to be able to sing in a choir again. Ambitious goal, I know, but I can do it. I know I can do it. I need to sleep but I am too busy thinking! AHhh!

I do need to sleep though, I have a meeting at 9. Boo!

Night!

Jenny

Thursday, August 21, 2008

Hey all,

I have decided the Naidas are little intelligent beings, capable of abstract thought, that have been taught by Phonak to spite their users.

The left aid has started cycling through the programs. No reason at all. I will just be talking to someone and then it beeping at me and going rapid fire through the programs, or it will just go to the first program (which is t-coil...). I went to my audiologists office tonight and she tried a few things -cleaning the aid, and changing the mic covers. When she listened the aid she said it sounded staticy and seemed to think that was wrong. They always sound staticy to me and I just assumed it was my ears.

I am going on Monday to do some adjustment with my music program to see if I can sing again. I am kind of excited. I will write about that after it happens. We have a follow up appointment booked for next Wednesday as well to make any other adjustments I want after applying Mondays to the real world. I don't need much time to adjust to know what I want to have changed.

I was thinking today and there was something I really wanted to blog about and now I absolutly cannot remember. Hmm...maybe it will come to me later. Until then I am sleeping!

Good night!

Jenny

Sunday, August 3, 2008

More hearing aid pictures!

Hey all,

I decorated the hearing aids to match my shirt. I thought they were pretty exciting looking so I took some pictures...






































Above is one of the pain causing pink earmolds, I don't like it.

edit: I am allergic to the earmolds. I have been having progressivly faster and worse reactions since I got them on Thursday. Today I reacted to the extent that my ears swelled shut around them and they were really hard to get out. They make my ears swell, red, itchy, and sore. I had to got to the hospital and be given meds to stop the reaction the last time. I hate my body, and it seems to hate me. I am allergic to everything...

That is all for now!

Jenny

Trip home...

Hey all,

I went home for the weekend because there was a family BBQ. I tried to get out of it but in the end I was sucked in. See, I hate family gatherings and for many reasons. I am so different from my family in every way that there is no way that I can socialize with them. We just have that few of things in common. I am also the only D/deaf person in my family. A few of my family members know some basic basic basic sign, but nothing beyond the alphabet and counting to 10. Basically I am expected to socialize with people who don't try to adapt themselves to me at all. I am forced into a group of people and made to speech read. Speech reading is hard enough with a small group of 3-4 people. Last night there were well over 10 people here and it was horrible for me. I couldn't follow conversations, I had no idea who was talking when, and I was just lost. On occasion someone would see me looking confused, summarize the conversation and then continue the conversation in the same matter that it was before.

I snuck away right after dinner and went out to a movie with my friend. She is learning ASL and I made her not speak and only sign for well over an hour. It was great. It was hard for her but I think she learned more doing that than she has ever learned before. I told her stories in ASL, and taught her a bunch of new signs. By the end we were making our way through a decent conversation. I was asking her questions and she was responding appropriatly. I was pretty impressed by her really!

That same friend is coming to Toronto at the end of August to help me and my audiologist with some hearing aid adjustments. We are going to see what we can do to make my hearing aids better for me to sing with and understand music. My friend is also a musician so she is going to help and see if I can sing with her. I have already told her that at all times, aside from when we are with my audiologist, she is not allowed to speak. We are only going to sign. I have a feeling she is frantically studying her ASL dictionary as we speak! LOL.

In other news, I think I may be allergic to the new earmolds. I can tolerate them in my ears for less and less time before needing to take them out. I am not taking them out because of the sound, but because I am so conciouse that there is something in my ear. Sometimes my ears get itchy, other times the molds just feel really really tight. I mentioned the tightness to my audiologist in an email and she suggested that it may be an allergic reaction. She told me to use my old molds for the time being but I didn't bring them home with me. I go back tomorrow though and will switch them as soon as I get back! I am only wearing them when I need them right now, like when I am out with hearing people. Speaking of that I am going out with a few friends in 15 minutes so I should probably stop writing and go get ready!

I will update later!

Jenny

Thursday, July 31, 2008

New molds, part 2

Hey all,

I got my new earmolds today. I sat there with them in my ears for 15 minutes, without the aids attached, to see if I would be allergic to them. I wasn't, or at least not yet, you never know with me. Though I don't seem to be allergic to them there are several initially obvious problems with them. First, the left one hurts. The left mold always hurts the first time around. I don't get it. The remakes have always been much better but the initial mold never is. I emailed my audiologist about it and we will see what she says. The second problem is that they aren't vented. Without the vents I may get a whole lot of ear infections. It is a double edged sword though, one way I get ear infections, the other I don't have as much gain to use because of feedback issues. Which is more important to me right now? I don't know. Third, and this isn't important, they are pink. Not very pink but they are pink regardless. I don't think it is noticeable in my ear but it is outside of my ear. They are pink...

It is late and I am sleepy! So no more for tonight!

-Jenny

Wednesday, July 30, 2008

New molds

Hey all,

Well, tomorrow morning I am going to get my new earmolds. We are hoping these ones will fix the feedback issues I experience. I am also going to ask her about some making some adjustments, not necessarily tomorrow but in the near future. She had changed some stuff because I had been feeling off balance between my two ears. She solved that problem, for the most part, but now my ability to pick voices - or anything really - out of the other sounds is almost non-existant. I initially thought I would adjust but I haven't. It is truly possible that this has everything to do with a change in my hearing and not the hearing aids. It is hard to tell at this point. I will ask her tomorrow what she thinks. In the mean time I am looking forward to getting new molds, kinda. I am not sure what exactly I am getting but I will find out tomorrow. She had mentioned a whole slew of different materials they could be made out of and I don't remember which one she had picked. I did research the ones I could remember though and several were not hypoallergenic which scares me a little. I am known to have allergic reactions to earmolds!

Anyway, I want to read a little and then go to bed...short post for today!

-Jenny

Saturday, July 26, 2008

Pictures!

Hey all,

I have decided to post a few pictures of my hearing aids. I like to decorate them with stickers and stuff since I have short hair and they stand out anyway! Here are some pics!

Yes, I realise they are all my right ear, I can't really take pictures of the left side of my head easily on my own! hehe


Thursday, July 24, 2008

I have it back!

Hey everyone!

I went and got my right hearing aid back again today. They ended up just sending me a new one which is fine I guess. We still aren't sure exactly how my hearing aid broke. She changed the battery and then the battery door was broken. I think we have decided it was faulty from the start and something she did just made it evidently faulty. It works now though!

I don't like the sound at all. I have actually sent my audiologist a few emails saying that I hate them and if I never had to use them for speech again I would be better off, and then there were a few saying I missed them and wanted them back. I mostly missed music and being able to hear it. Actually I have been listening to music all night but when I am listening to something that isn't music, IE ambient noise, I am miserable. I hate the sounds. I think it is because I can understand the music. I can't understand the noises and environmental sounds very well anymore. I think with time and practice I could but I don't really have anyone to help me with that. I need someone who can devote an hour a few times a week to helping me learn sounds. I need someone to quiz me with different sounds, and someone who can explain what all the sounds are. If I am alone in my apartment and I hear something I don't understand it can be near impossible for me to trouble shoot what the sound is on my own. I can't always tell the direction of sounds or the volume of them so I basically have no perception on where, how loud, or what the sound is. It can be very frustrating sometimes to simply not understand the auditory world at all. I can understand the visual cues, and I can understand the tactile information but sound just doesn't make sense anymore. I think that is more frustrating for me than not hearing it. I am happy in my silent world, though I miss music, and then someone comes along and tells me I need to wear these plastic things on my ears that makes everything seem loud and foreign. I slowly start to get used to the sounds and then somebody takes them away for some reason. Then when I get them back I don't understand anymore and I need to start over again.

Then there are the adjustments! Every time my audiologist adjusts my hearing aids I can't understand anything for a long time. This is especially annoying if I had already adjusted to them enough that they were helping with speech reading. Then if my audiologist changes something I can't really communicate easily for any specified period of time. It is annoying!!!

Anyway that is all I have time to write. I am hoping to have a VLOG up in the next few days!

Jenny