Journeys of a Deaf Girl

Where have all the Deaf feminists gone?

2010-12-09T21:30:00.001-05:00

Part of my role with both my business and within my community is to facilitate workshops. Most of my workshops are around Deaf culture and access. Tomorrow I will be facilitating a workshop for hearing professionals who work with Deaf women who have experienced violence. I use violence as an all encompassing term to me anything from domestic violence, to stranger rape, to childhood abuse.

In researching for this workshop, I attempted to find some statistics relevant to the Deaf community. To my surprise there were none. There were many hypothesized stats, but nothing concrete. What is hypothesized and published is that 50% of Deaf women will experience violence in their life time. The basis of this is that these are the stats for the hearing population. I think this is flawed logic because of the societal perception of Deafness as a disability. The violence statistics for disabled women are much higher, closer to 90% of all women with disabilities will experience violence.

Beyond that, violence is not part of the discourse in our communities. Women don’t talk about these things at all. These are silent issues which are shrouded in denial by those who experience or witness it in the community. Without an active and continued discussion about the issues, important information is not passed through the community. I think as a Deaf feminist, and hopefully with fellow Deaf feminists reading this, we need to open up this conversation in our communities.

I have plans to do so, which are developing slowly. We shall see where it goes.

I'm Back

2010-10-31T12:59:00.001-04:00

Hi All,

Since my last post I have changed schools. Where I am not is AMAZING and they are absolutely great. I have interpreters, notetakers, and anything else I need without issue. The campus is small and there are several Deaf students.

Jenny

School sucks

2009-09-24T19:07:00.000-04:00

I am so done with school! So DONE! I have impeccable luck with interpreters and I give up. The University is not providing interpreters for University recognized co-curriculars or events which is frustrating beyond belief but I am now seeking legal action to remedy that.

Beyond that I was having issues with an interpreter and her approach (one of those “I only interpret for the professor, hyper-over professional, code of ethics, the University is my employer so I won’t accept feedback from the Deaf person, kind of interpreter). After telling the University about the issues, which I was assured by other Deaf people and interpreters were valid concerns, and nothing happened I got the interpreters and accessibility services together for a meeting. let’s just say that the meeting didn’t go to well.

The interpreter was defensive (obviously) and continuously tried to pin things on me. For example: classes start 10 minutes after the hour, but interpreters are booked and hired from the start of the hour. This interpreter didn’t feel a need to show up at the start of hour because the prof wasn’t presenting yet and when I mentioned that sometimes students or the prof or the TA want to talk to me before the class starts she had the nerve to tell me that she has been working a long time and knows that Deaf people know how to communicate with hearing people. That I live in a hearing world and go to a hearing school so I should be able to do it without an interpreter. I was shocked that she had the nerve to say that.

The meeting got nasty and when I got home I started trying to replace her and a few minutes later was told that she quit. I was not impressed with her at all.

Something goes wrong with interpreter every term. Sometimes part of it is me and I accept that 100%. Really- there have only been problems like this 2 times all together. The other times I have lost interpreters mid term were because 1 didn’t feel qualified (and she wasn’t) but we are still on good terms and I will work with her again. One wasn’t a good match for me, we both agreed, no hard feelings and all is still fine there. Then there was one who I had a conflict with. That was both of us and the boundaries were fuzzy there from the beginning so a bit different. Today it was this interpreter I had never worked with before this term and it just didn’t work for either of us. My expectations did not match her style.

Now I am down one interpreter for one class and while I would rather be down an interpreter than have to work with her again it is frustrating. Sometimes I wonder if I am made for this University thing. At least this hearing university thing. Gallaudet is looking better and better these days and I would so go there if I didn’t have to move to a new country….

I need to vent. Thanks for reading!

I was denied an interpreter at a hospital!

2009-05-19T01:33:00.001-04:00

On May 18, 2009, around 12:00pm I went to a hospital because of a back injury. I was with a friend, who was there to wait with me and make sure that the incident that caused the injury was recounted properly since she was there when it happened.

We got there, filled out the initial patient information form and I handed it in and went to sit an wait. During this time my friend was calling the emergency after-hours interpreter number to get a terp for me. After several unsuccessful attempts to contact one, she finally got through to an operator. At the time she called there were no interpreters available. Shortly after that the triage nurse called my name. My friend and I were communicating in American Sign Language (ASL) and I was not aware of the nurse calling my name. Soon a nurse came and told me was her turn.

I entered the triage area and the nurse began speaking to me in English. I gestured to show that I am deaf and the nurse continued to speak. I then gestured that the nurse should write and she wrote “how old are you?” I responded in writing, and the nurse began to speak to me once again. I then firmly pointed to the pencil and paper to make sure the nurse understood that she must write. The nurse finished taking my history through writing notes back and forth and then told me to go to registration. I gave the person at the registration desk my health card and showed her a note that I had typed into my blackberry saying “I need an ASL interpreter”. The woman at registration smiled and gave me a “thumbs-up” and gestured for my friend and I to go sit down.

My friend and I sat in the waiting area for a few minutes and continued to communicate with each other through American Sign Language. When it was time for me to enter the patient care area the woman from registration called my name. My friend made me aware of this, but since I was the patient I expected direct communication unless there was already an ASL-English interpreter there. The woman from registration continued to call my name and then started to ring the bell at the desk to get my attention. She then proceeded to bang on the desk and slowly come around the desk, continuing to call my name and bang on things. Eventually she entered my peripheral vision and was able to get my attention and gesture it was time to enter the patient care area. I showed the woman the note saying “I need an ASL interpreter” once again before entering.

Me and my friend entered the patient care area and once again showed the woman from registration the note asking for an interpreter. The woman from registration then told two nurses at the nurses station that I needed an interpreter. The triage nurse then exclaimed that I did not need an interpreter because they had I could write and read and the entire history had been completed that way. I then showed the triage nurse the note requesting an interpreter and once again the nurse said no and refused to get one.

At this point the triage nurse walked away and began to discuss me and exclaim that I did not need an interpreter with another nurse in a public area, showing no respect for me. The triage nurse then came back and asked me for a urine sample through spoken English. When I did not respond the nurse then wrote a note explaining what that she needed a urine sample and how to do it. I showed the triage nurse the note asking for an interpreter one last time. The nurse then spoke to me once again exclaiming that I did not need an interpreter.

My friend then recognized that the triage nurse was going to continue to ignore my request for an interpreter and then explained in spoken English (with my permission) explained that I needed an interpreter and that the hospital had a legal responsibility to provide one. The three nurses that were there continued to argue that this was not the case and they did not have to because I could write and read. My friend continued to explain that if I were to be a Chinese, Portuguese, or Italian patient the hospital would provide an interpreter and that this was the same situation. When the nurses continued to refuse to call an interpreter my friend then asked for a pen and wrote down the name and number for Ontario Interpreter Services which the nurses ignored.

A nurse then came around to the outside of the desk with a mask covering her mouth and nose asking who spoke and understood English. My friend said that she did and then nurse told her to “tell your friend to go sit down”. My friend refused and told the nurse to ask me herself and I gestured for communication to be direct and wrote a note on paper saying that my friend was not an interpreter.

Then nurse then turned to me, with the mask still covering her face, and began to ask me if I understood her. My friend then told the nurse that I could not lip read the nurse when the mask was covering her face. Once again the nurse told my friend to “tell your friend to go sit down”. My friend then asked the nurse what she would do if she were not there, to which the nurse responded that she did not like my friends attitude. A nurse also said that if my friend were not there that I would not be either. My friend continued to explain that I had a legal right to an interpreter and that the hospital was responsible to hire one. The nurses all said that they were not responsible to “hire” anyone because they were nurses.

At this point I decided that I should go to a different hospital and asked my friend to interpret a few things for me. I commented that I could not access medical services at the hospital without proper communication, and that English was not my first language. Then I said I was going to leave and go to another hospital. By this point the nurses had called security and they arrived as me and my friend were leaving. The nurses said that other hospitals would not serve me with the attitude that we had.

We then went to another hospital and along with the service of a professional ASL-English Interpreter I received medical care and treatment.

My Ears Hear Wrong

2009-04-27T16:17:00.000-04:00

My ears hear wrong. It is a plain fact. There is no point in hiding it, trying to conceal it, or doing anything other than embrace it.

Really, ears do not hear at all, until chunks of plastic encase them and amplify sounds to a point where my eyes twitch and my head starts to throb. The sounds that assault my ears begin to take over my world and grasp me in a tight restraint. All of my senses succumb to my obscene auditory environment as I desperately try to distinguish the sounds I am hearing. The noise overwhelms me as I try to separate the overlapping sounds, to create something that my brain can process and identify.

Once I can establish one of the sounds from the group, I start to workout what it may be. The noises continue to smack me repetitively, threatening to rip the one sound I picked out away from me. I struggle to keep a grip on that one sound and figure out what it is. I begin to survey my visual environment - a difficult task given the constant attack on my auditory sense. I am not sure what this sound could be attached too. It is a constant sound with only slight intermittent pauses. It has a growling quality and I start searching for a cat, perhaps a dog. Then I remember that I am in a lecture hall and the probability of there being a cat or dog in a linguistics lecture is slim.

My eyes continue to dart around the room as I start to focus on my tactile sense. I am feeling lots of thing. The most obvious are the footsteps of the person walking in front of me. Through my notebook I can feel the vibrations of the voice of the man next to me. Neither of these match the sound.

Suddenly the sound disappears. As quickly as I was able to pick it out, it is gone. I try to dig it out of the mass of noise ambushing my cochlea. I cannot find it though. It is gone. I turn to my right and notice a student pick up her cell-phone a begin to speak. The sound was her phone ringing.

Deaf vs. deaf

2009-04-20T21:14:00.000-04:00

The notion of the binary is something that is often challenged in the discussion of identity. Many binary scales are opposed in anti-oppression frameworks, perhaps the most famous and common being the gender binary of male and female followed by the race related binary of black and white. However, one binary that I rarely find challenged is that of Deaf and deaf.

I have a strong Deaf identity and I have valued roots in the Deaf community. At the same time, I have roots in the Hearing community as well, coming from a Hearing family in a Hearing community. My Deaf identity is not on a binary scale but rather a fluid forever changing entity that exists within me.

On a recent trip to my hometown of Kingston I began thinking more about my identity. To my friends and family in Kingston I am not Deaf. No matter how much I tell them about my Deaf community, my Deaf friends, and my beloved language - ASL - I will never be Deaf to them. They never get a glimpse into my Deaf life and subsequently into my prioritized identity. In Kingston, I am deaf. I am oral and ASL is simply a three letter phrase that holds little meaning. For my friends and family to even begin to conceptualize that I use a completely separate language 90% of the time is impossible.

As I got onto the train this afternoon to return back to Toronto I automatically switched back to my culturally Deaf identity and away from my oral deaf identity. I turned off my voice and stopped lip-reading, communicating mainly through notes and gesture. Upon my arrival in Toronto I will reunite with my Deaf friends and community and for the first time in 5 days my hands will be back at home doing what they do best - communicating!

The difference with my Deaf identity in Toronto is that my community and the people I interact with, for the most part, can conceptualize and understand my counter identity. They can imagine me speaking and interacting with the hearing world using their language, because for most of them it is their lived reality too. I have some people in my life who may not be able to see the deaf side but I am sure most of them can.

Within myself I can see both sides at all times. I am constantly aware of the binary scale that I am supposed to adhere to at any given moment. The thought of me living in both realities at once terrifies me as I envision what my separate worlds would do as they collide. Would there be an explosion? A war? Or maybe they would shake hands and get to know one another? It is impossible to say what would happen as my two worlds collide in what would quite possibly be an epic moment which perhaps would create a new solar system for my identity to explore.

In May the true test will become a reality as my Deaf friends and I make a journey to Kingston for a three day get away from the city. My worlds will meet, mingle, and perhaps even mix and that will be the true test of the strength of my identities. Which one will prevail in such a volatile environment? Even I am not sure how to answer that question and we will have to wait and see.

Blinged out hearing aid!

2009-03-20T19:47:00.003-04:00

Big City Accessibility

2009-02-21T22:37:00.001-05:00

Hi everyone,

I recently returned to Toronto after spending a week in the small town where I am from. For that one week while I was there I was oral only. I normally live “voice off” but when I am in my home town that is pretty much impossible given the mentality there and people expecting me to speak.

Today was my second day back in Toronto and I was so pleased to spend all day “voice off”. I have come to value how accessible Toronto is to me and the rest of the Deaf community in general. Sure, there are many improvements to be made, but as a whole it is decently accessible.

When I go out for lunch, no one gets freaked out if I gesture and point to the menu items to order. The waiters are willing to write notes, sometimes even initiating it themselves. Then there are all the people that know a little ASL, and regardless of how minimal their ASL knowledge is I really appreciate the effort.

Today I ordered my tea in ASL at Starbucks. The person working was fluent in ASL and it was great to see that. Then I went to Indigo and at the cash the woman know some basic ASL. Enough to communicate with me in a basic sense.

Today just made me very happy and I wanted to share.

Jenny

University problems

2009-02-20T20:33:00.001-05:00

Hi everyone,

Educational access is a struggle that I think any Deaf student in the mainstream will face. It was a huge fight for me in school, but when I started University I naively thought that everything would be okay.

One month ago I had a meeting with someone at my University. She oversees the Accessibility Services office, and I met with her to discuss the many access concerns I have faced. Those concerns included interpreters, professors, lack of awareness, and the incredibly limited number of TTY’s on campus. After our meeting she promised to follow up with me within the week.

A week came and went, and then two weeks - so I emailed her and told her what steps I had taken since the meeting. Another week went by without a response so I emailed her again let her know what steps I had taken in that week and to encourage her to fill me in on what she had done. Another week passed and today I sent her a forward email expressing my concern. I would like to share it! I am nervous that I may have been a little too forward. Let me know what you think!

Dear Ms. ______,

I am very disappointed that you have not followed up with me yet. I strongly value commitment. I do not take commitments lightly and I have strong respect for those who honour their commitments. In our meeting on January 23rd, you said that you would follow-up with me within the week and to see that this has not yet happened a month later is incredibly disappointing to me.

I have been putting an enormous amount of my time and energy into making sure that the environment at the University of Toronto is made as equitable and accessible for its Deaf students. I feel that it is unfortunate that the University places little value on our culture, our language, our rights, and our education.

I want to be at the University of Toronto and I plan to stay here for the remainder of my undergraduate degree, and possibly to pursue graduate work. I have the same right to be here as any other student and the way I have been treated by people in this institution is disgusting. I haven?t been in a more audist environment in a very long time - if ever.

I want to work with the University to see change. I am not interested in escalating any of this, but with the blatant disrespect and lack of commitment I have seen to this point I am starting to feel that may be my only option.

I am willing to educate, advocate, provide feedback, ideas, and support establishing change anyway I can. I genuinely want to see the University work with me on this and I do not want to feel like I am constantly fighting for recognition of the unique issues I face as a Deaf student.
_________has been an amazing support for me this past year. She is one of the few people in the University who has shown genuine concern for the inequities that myself and other Deaf students are facing. I am so appreciative that I have this support and that _____ is willing to learn from me and work with me to make sure the University is accessible to me as possible.

Even with ____ doing all she can, it is not enough. There are policies and procedures that Accessibility Services are to follow that are simply not up-to-date. There are fundamental issues that go beyond Accessibility Services and beyond _____'s control. For those, I need your help. If this is not something you are interested in helping me with please let me know and direct me to someone who you feel would be better suited to helping me address these issues.

Sincerely,

Jenny

So, I want feedback! What do you think???

Jenny

Social Effects of Hearing Loss

2009-02-15T16:25:00.000-05:00

Hey everyone,

Today I want to talk about the social effects of hearing loss. This is a topic I have seen pop up on message boards a lot recently and it also comes up a lot from medical professionals when they are trying to convince me about the cochlear implant thing.

When I think of my social experience in context of being Deaf, there are 3 common scenes that come to mind.

Scene number 1:

I walk into the large lecture hall about 15 minutes before the start of my class. It is relatively empty which gives me the chance to get the best seat possible to allow me to access as much of the visual information as I can. As the class fills up, the seats around me remain empty. Soon I glance around to notice the room is almost filled to capacity, yet I still have a bubble of space around me. No one ever approaches me, looks at me, or tries to communicate with me in anyway. As far as they are concerned I am contagious. They isolate me.

Scene number 2:

I walk into the large lecture hall about 15 minutes before the start of my class. It is relatively empty which gives me the chance to get the best seat possible to allow me to access as much of the visual information as I can. As the class fills up, someone sits in the seat next to me. She pulls out a blank piece of paper and writes “Hi, how are you today? Are you worried about the quiz next week?”. From there we start a written conversation about our class, our quiz, our professor, and before we know it the lecture is starting and our conversation must end. During the brief breaks we take the opportunity to chat some more, just like the rest of the students.

Scene number 3:

I walk into the large lecture hall about 15 minutes before the start of my class. It is relatively empty which gives me the chance to get the best seat possible to allow me to access as much of the visual information as I can. As the class fills up, someone sits in the seat next to me. We strike up a conversation, recapping the weekend that had just concluded. Our hands are moving extra fast as we try to use every valuable second of social time we have. As the class starts we find ourselves still drawn into our conversation. Slowly we relinquish the hope of continuing for an hour and pay attention to the class. Every time there is as much as a brief pause, we catch the opportunity to chat.

For me, these three scenarios come up often. My preference is number 3. The third scene is played out when I am around people who use my language to communicate. For me the social effects of hearing loss are the same as the social effects of being dropped into a new country where you can’t speak the language. When I am surrounded by people who don’t know ASL, I do my best to communicate and often they do the same, but I am - and always will be - most comfortable around Deaf people and using ASL. To me, saying that I am “suffering the social effects of hearing loss” is the same as saying that someone is “suffering the social effects of being French”.

Jenny

Cochlear Implants

2009-02-08T23:56:00.001-05:00

Hi everyone,

Cochlear implants - it’s a topic I have avoided like the plague. I will touch on it briefly and then run screaming in the opposite direction. The only person who has been subject to multiple serious conversations about CI’s with me is my audiologist and I am pretty sure that at this point, she groans at the very mention of the device when I am involved.

My audiologist and I have been through it all. Every pro and every con. We have had lengthy in person discussions on a near bi-monthly basis and the occasional email that could be published as a short novel. It has almost been one year since the discussion started and I honestly cannot say I am any closer to making a decision.

Right now I have my audiogram in front of me. It looks something like this…

Freq. R L
250Hz 105 100
500Hz 110 105
750Hz 115 105
1000Hz 120 115
1500Hz NR NR
2000Hz NR NR
4000Hz NR NR
6000Hz NR NR
8000Hz NR NR

SRT: DNT
Speech Discrimination: CNT

Basically I am Deaf, both audiologically and culturally.

With that audiogram you would think it would be an easy choice for me. I love music, I have a Hearing family, I’m young, and I have a ton of potential. At the same time, I understand music through vibrations and enjoy listening to it with my hearing aids, I don’t spend a lot of time with my family and they live several hours away, I’m young, and I have a ton of potential.

Recently, in an email to my audiologist, I laid everything out on the table. I said exactly how I felt about everything in that exact moment. I would like to quote some of that now…

“I realized how much I have changed as a person in the last year. I am not sure I can pin point how I have changed exactly but my personality, my views, and my opinions have all evolved a considerable amount. I know part of it has to do with me living on my own in a new city, part of it has to do with growing up and maturing, and part of it definitely has to do with my hearing loss. I feel like the idea of getting a CI is more connected to who I used to be than who I am now. I do not feel like I fit best with Hearing culture anymore, I definitely feel like I fit better with Deaf culture.”

“I believe strongly that things happen for a reason. I have been through a lot in my life and I have had many profound experiences that have influenced me in ways I don't even know yet. I have already seen how my hearing loss has affected others in positive ways and ways in which I have been able to use it in positive ways. When I go to work and I see my kids that have a hearing loss and the way they react to be because I am the same as them…it's really interesting. I can't explain how it is impacting this decision for me but it is.”

“I'm not torn between hearing more and hearing what I can now. Honestly, I am quite comfortable with what I can hear now. I am torn because it is choosing between cultures and languages. It goes beyond all of the audiological stuff and becomes an argument of which world I feel best suits me. In the end though, if I were to get a CI, I wouldn't really fit in either world. I wouldn't be Hearing and I wouldn't be Deaf. I remember being in that spot before. I can remember the concentration it took for me to be in school and how much I missed. I don't want that again.”

Even with all of that I found myself pulling out my Cochlear and my Advanced Bionics information packages and flipping through them for the millionth time in the last year. I can’t help but wonder what it would be like to hear a little bit more but at the same time I am terrified to find out.

Every time I meet a new audiologist and the discussion about cochlear implants comes up I get apprehensive and set up a barrier. Often the audiologist is completely disrespectful of my Deaf culture and ASL which is also a massive turn off for me. Right now, I have an amazing audiologist who respects every choice I have made so far. I am confident that if she truly believed I was making the wrong choice, she would fight me on it but up to now she has been 100% supportive.

In the fall we met with a cochlear implant audiologist together. I would never have done it if my audiologist wasn’t there with me. I left that meeting completely turned off the idea and was adamantly against it for a month or two before returning to it once again. This is the trend for me. I get curious and look into it again and then run in the opposite direction. I don’t know if I am running out of fear or of genuine disinterest and until I can figure that out, I can’t make a decision.

That’s all for tonight!

Jenny

Hearing For A Day

2009-01-19T23:25:00.000-05:00

Hi everyone,

I have been a little absent from blogging for a few weeks. Classes just started up again and I have been preoccupied with fighting for equal access for d/Deaf students at my university.
Today I want to talk about what I would do if I were to be hearing for a day. If I had 24 hours with perfect hearing, what would I do with it?

Someone asked me that question recently and I was not sure how to respond. The concept of having perfect hearing is foreign to me. I have no idea what perfect hearing is - what it sounds like. People have tried to describe it for me. I have been told what I hear, with hearing aids, is muffled. Perfect hearing sounds crisp, fresh, and rich. Without being able to contrast the two myself I cannot comment on what I hear in comparison to what a hearing person would.

I think people would expect to answer the question with some romantic, dream like response. I would want to hear the voices of the people that I love, I would want to hear the music that I love to feel, I would want to hear the sound of the ocean and birds flying through the sky. I don’t think I would. I think if I could be hearing for one day I would want to hear my voice and I would want to hear someone say words that I struggle to pronounce.

I don’t care about the birds, the ocean, and my friends and family’s voices. I have never heard them the “right” way before so why would I want to hear them now. I have no idea what I have apparently been missing and I am not really interested in finding out. What little sounds I do hear with my hearing aids scare me enough.

Sometimes I do want to hear. I do want to hear words and the way they are pronounced but when I do suddenly hear a new sound or experience more sound that normal I get scared. I feel nervous and I don’t understand this strange new expansion of my auditory world. It is culture shock for me when I hear that new sound. Some people adjust to those situations better than others, and I do not adjust at all. I recoil and take my hearing aids off - preferring my silent world over the strange, bizarre sounds that make my eyes twitch and my head ache.

So if I could be hearing for day, if I could survive the day without plugging my ears, I would want to hear my own voice and try to learn how to pronounce a few words. Beyond that I have little interest in my auditory environment, that vast scary world that encompasses most of the people I spend my days with.

That is enough for tonight!

Jenny

Short Story

2009-01-05T18:05:00.001-05:00

Hi All,

I was looking through old files and I found this story I had written about my first day of high
school. I wanted to share!

As I walked up to the cold metal doors for the first time I was immediately appalled by the awkward green paint that had been slapped on them. The doors were a hard shapeless mass of heavy steel. They seemed to be an impenetrable barrier between myself and my secondary school education - and I was fine with that. I took a slow, deep breathe and apprehensively opened the vast metal expanse to peer inside. What lay beyond those doors was a sea of youth. A melting pot of emotions and sexual tension. It was at that moment that I knew that the next four years of my life were going to be hell.

I slowly made my way through the cinder block maze to room 108. The door was open and as I looked inside it seemed like a serene haven compared to the unorganized chaos of the hallways. I stepped inside with a sense of urgency. I examined the room; every corner, every wall, every window, every door and every person. It was a strange shade of steel blue and the walls were adorned with posters filled with witty, dull comments about education. I sat down in the desk in the back left hand corner of the room. I pulled my purple notebook out, turned to a fresh page, and began to write. The only other people in the room were all sitting together. They sat in a little clump in the front two rows in the right hand corner. They seemed as though they had known one another for a while.

I watched the group and tried to make some observations. There were five of them in total. Four girls and one boy. That is what they looked like too, girls and boys. Not young adults. All of them looked as though they had been dressed by their parents. All of the girls were wearing conservatively long skirts. Their shirts were basic plain coloured tee's and all but one of the girls had a knit sweater over top. They all had long hair, in varying shades of sandy brown, that reached well past their shoulders. The one boy was wearing painfully short jeans and a sweater that was clearly knit by his great grandmother. He had bright red socks that protruded from his unfortunately large shoes. His hair was a mousy brown bowl that balanced precariously on his head. I started to watch their lips so I could see what they were saying. One of the girls was talking about her church. Or maybe their church. She glanced up and noticed me staring so I quickly looked away.

Soon other students started to flood into the room in little packs. I watched them all as I furiously scribbled notes about each and every one of them into my purple notebook. 'Girl who looks like a mouse: seems to be timid and afraid to breathe...maybe she will suffocate, Boy who looks like the stock surfer character in a bad shark attack film: Judging from what he is saying about his tractor he is just trying to look like a surfer...I doubt he has ever seen an ocean, Church girl: keeps eyeing me in funny ways, make sure to avoid her' Those were my first impressions of my new classmates. Girl who looks like mouse, stock surfer boy, and church girl.

The chatter was overwhelming. Everyone seemed to know one another. They were all talking their summers and their plans for the new year. Timetables were being compared, teachers were being discussed and I could see the cliques forming at that very moment. I tried to take in the whole room at once. I tried to see the class as one. It couldn't be done we were all too different. As I was surveying my new classmates someone appeared beside me. I could feel her gaze piercing through me. I glanced up to see Leah smiling nervously. Her bright red hair was shorter than the last time I had seen her. It fell just below her chin, framing her freckle-filled face perfectly. She had gotten new glasses which she seemed to hide her bright green eyes behind. She had grown quite a bit and her tall slender frame towered above me. Her outfit was well planned. She had on jeans and a deep turquoise knit top that fit her perfectly. They hugged what few curves she had, accentuating her female attributes. Leah was no longer a lanky, awkward kid. Leah was beautiful.

A moment after I realised who she was she sat down in the desk next to me and started regaling me with details of the past two years. We were deeply engaged in conversation when we noticed that the room had fallen silent. We looked around to notice everyone watching us. They were fascinated and seemed to be studying every movement we made. Neither of us knew anyone else in the class and no one else knew us. Some of the kids started whispering to each other and quickly conversations broke out across the room. Leah and I started up our conversation once again. We were in the midst of comparing timetables when the teacher walked into the room. He walked straight to the white board and scrawled "Mr. Addison - Grade 9 Geography" across it in the most horrific cursive writing I had ever been forced to read.

Mr. Addison was a tall, slender, nerdy looking man. He had an awkward, distinct gate and he seemed to trip over his feet with every step he took. He was wearing a plaid dress shirt and khaki coloured dress pants. His shoes were polished and produced a blinding glare when the light hit them just right. He plunked his bag down on his desk and started sorting through a folder of papers.

I looked back over at Leah who was now searching through her mauve backpack. She pulled out a black case and walked toward the front of the room. She approached Mr. Addison and handed him the small black transmitter. I could not see what they were saying but I know she was explaining the FM system to him. A short while later she returned to her desk. She asked me if I was going to give him my transmitter. Then she glanced up at my ears to see that they were empty. Her face held a look of concern. "Are they broken?" she asked me. They weren't broken. I didn't have any.

Mr. Addison flicked the lights a few time to signal that class was about to begin. I turned my attention to the front of the room and quickly found myself lost. The expressionless drone about our high school careers was not particularly engaging and I soon found myself drifting into a dream land. Before I knew it the bell rang. It was loud! The desks shook with it and all of the students jumped. Everyone except for Leah and I. I waited for Leah while she collected the FM transmitter from Mr. Addison and then we ventured out into the sea of youth that was pouring through the halls. We jumped into the current and let it carry us to room 106.

We entered room 106 to find an average looking, young man. He had sandy blond hair and an awkwardly large nose. His arms seemed to dangle and move about in a spaghetti like fashion and he over enunciated every word. Leah and I took the two front and centre desks and started to chat again. We were in the midst of a heated debate about the students who were in our Kindergarten class when the average looking man interrupted us. He said "You must be Jenny and Leah, I am Mr. Wilson!". Leah and I identified which one of us were which and soon found ourselves engaged in conversation with Mr. Wilson. He had so many questions for us! He was quite young and it was only his second year of teaching. Not only had he never taught a hard of hearing student before, but he was also new to teaching in general. He wanted to know where to stand when he taught, if the desks were set up well for us, and how the lighting effected our ability to speech read. He was curious about the FM system and most of all why I didn't use one. I was dreading that question. I hated having to explain to people why I chose not to use hearing aids or any other sort of amplification. It is hard to explain to someone that I was sick of the doctors and all of the tests. I was happy with my quiet world. I could get enough sound to have speech reading support, to use a phone - provided it was loud, and to function in school. I did not need any other sound. I was comfortable with what I had. People did not understand that. They could not understand that. Mr. Wilson seemed confused by my explanation but dropped the subject. I am sure he could tell by my body language that it was not something I was interested in discussing.

I had been so involved in our conversation that I had neglected to notice the small groups of students filtering into the room. As I surveyed the room I noticed a few other students that I knew. I had gone to elementary school with them. I excused myself from the conversation and left Leah and Mr. Wilson to talk. I walked over to Lauren and sat down on her desk. Lauren and I had known each other since third grade. We had kept in contact throughout middle school at dance and the barn. Just as I started to ask her what her other classes were the bell shook the school again. This was the signal for class to start. I scurried back to my seat and prepared to be bored to death with more meaningless chatter about highschool and how it will be different from middle school.

I was wrong. Mr. Wilson did not lecture us on highschool. He wrote a formula on the board and started teaching math right away. I did not even attempt to pay attention. Once there were letters and numbers being used consecutively I was lost. There was no point in me even trying to follow along. I let my mind wander and thought of the days spent at my middle school. I missed the friends that I made there. I missed dancing every day and being surrounded by artistic, crazy, fun people. I missed everything about it. I could have continued on in the program for high school but for some reason I felt a real pull to be at Ernestown Secondary School. I was not sure what had brought me there or why the pull was so strong. Maybe I would never know. As I contemplated the reasons I glanced up at the clock to see it was 11:51am. A moment later the bell shook the school once again.

All of my classmates leaped up and ran into the hall. For many of them this was their first day of having a cafeteria at school and they were excited to buy their lunches for the first time. Mr. Wilson intercepted Leah and I on our way out the door to question us on his lesson. He wanted to make sure he had done everything correctly. Leah handled his questions with an amazing sense of ease and provided criticism in the most tactful manner. She really had developed into a young woman since our last meeting. I hadn't though. I was still the awkward, flat chested, lanky, linear kid I had always been. My conservative black metal glasses still held coke-bottle lenses that distorted my eyes, the large gap between my front teeth still made it look like I was missing a tooth, and my long hair still hung lifelessly on either side of my face. I looked like an overgrown 8 year old. I acted like one too.

Leah and I made our way to the cafeteria without saying a word. We clutched our lunch bags and apprehensively made our way through the halls. We sat down in a corner of the cafeteria and didn't even try to find a table. The floor was fine and we could hide there. I opened my lunch bag and pulled out my salad. Leah had a sandwich of sorts and we began to eat. We chatted a little bit as we ate but we were both too nervous to have too much of a conversation. We didn't want to call attention to ourselves. We ate quickly and set out to find our next class after only 15 minutes in the cafeteria. It was easier to talk when we weren't so exposed to the whole school. At least we could hide in a classroom.

Our next class was English with Mrs. Wyatt. It was on the second floor, a place where we had not yet ventured. We found a stairwell outside the cafeteria and as we started to head up it we were met with a stampede of children. They were running past us and around us. We stood there stunned and waited for it to pass. What seemed like several minutes later the rush subsided and became a slow trickle of stragglers. It was only later that we found out half of the second floor housed a middle school. The stampede that nearly killed us was a group of 7th graders heading out for recess.

Once at the top of the stairs we made our way down the short hallway to room 207. Just inside the door was a large desk with a petite woman sitting cross legged on top of it. She was going through a pile of papers and jumped when she saw us entre the room. She held our her hand and introduced herself as Mrs. Wyatt. I was a little shocked that this was our teacher. She had a curly blonde mop of hair that somewhat resembled a poorly groomed poodle, her glasses looked like they were designed in the 80's and her outfit was appallingly bright. I could not tell if she was wearing a long shirt or a dress with pants underneath but either way it looked like a rainbow had thrown up on her.

Leah and I introduced ourselves in a very timid manner. We were not sure if this woman would bite. "Leah and Jenny! You're the new deaf girls!" she exclaimed. She quickly switched from Spoken English to Signed English and continued her welcome. Her signing was rough and quite hard to follow but she was making and effort. Leah stopped her after a few minutes to inform her that we were hard of hearing, not deaf, and we could both read lips. Mrs. Wyatt switched back to Spoken English seamlessly and continued her ramble. Just as she was telling us about a monkey that she once used American Sign Language with another student showed up. Mrs. Wyatt was quickly distracted and Leah and I darted for the nearest desks.

Mrs. Wyatt only remained occupied for a few short minutes. Just as Leah and I were settling into our desks she came bouncing over to us. Before we knew it she was rambling on about her time spent in Lima, Peru. On occasion I would glace over a Leah and see her watching intently. She was absorbed in Mrs. Wyatts every word. She nodded in all of the right places and said only the right things. I, on the other hand, was a timid and fearful creature. I was very unsure of this whole situation. Why had I gone back to this group, back to Odessa? I was content in Kingston with all of the city kids. They were more like me. We were all different but in the same way. Here I was just different - and afraid of all of the other different people. Especially Mrs. Wyatt.

The day was flying past and I seemed to be missing most of it. I been stuck in a dreamland ever since Leah had shown up. Her charisma and intelligence had scared me away and I had retreated inwards. As I was deciding to engage in the conversation taking place before me the bell shook the school. A herd of students began to flow into the classroom and occupy the desks around me. Mrs. Wyatt redirected her attention to all off the new bodies in the room and left Leah and I alone. I noticed church girl come in. It was the first time I had seen her since Mr. Addison's class. She looked at me and I quickly changed my gaze to the student behind her. It was the boy with the red socks. They took the desks next to Leah and I. The bell shook the school once more to signal the start of class.

Mrs. Wyatt leaped to the front of the room and began what has come to be the most animated English lesson I have ever witnessed. She read us poetry for the entire class. She never introduced herself, she never spoke of class expectations, she never did any of the things one would expect during the first class. She just read. Her reading was amazing. She used her whole body to convey even the most simplistic of words. She danced and twirled around the room. Her movements and words enthralled the class. For some, I am sure it was the first time they had ever truly listened to poetry. There was something very special about this teacher - as scary as she may be. With all of her movement it was hard for Leah and I to follow her words, yet because of her movement we understood every word. It was a strange experience, one that is hard to describe. I knew right then that this woman would be someone who would understand me. She would get who I was. As we sat there mesmerised by her darting about the school shook with the ringing of the bell once again. We all waited for her to finish the poem she was reading before quickly escaping the room. Although it was one of the most interesting lessons I had ever experienced, it was a bit of a sensory overload and I needed a break.

Leah and I found ourselves fighting against the current to get to our next class. We pushed our way down the hall, down the stairs, and through a remarkably crowded cafeteria to room 119. In room 119 we found a multi-levelled floor covered in a hideous grey stained carpet. The chairs were set up in four rows and curved around the room. Amongst the chairs darted a tall slender man. His hair was purple and blue with spots of grey. His was wearing acid wash jeans and a bright blue concert shirt that said "Blue Skies" across the back. He had on rainbow coloured glasses that were far to large for his face. He seemed oblivious to our presence until he almost ran us over. He stopped the instant that he noticed us and took off his glasses. He inserted the arm of the glasses into his mouth and began to speak. Leah quickly stopped him to inform him that we were hard of hearing and needed to be able to see his lips as he spoke. He hooked the glasses onto the collar of his shirt and began speaking once again. "I'm Mr. Rush! Welcome to grade 9 music!" he said with a goofy smile "Sit anywhere for now and we will divide into sections once we do instrument selection!". Then he ran off.

Leah and I took the seats near the piano and watched the other kids filter in. Once again church girl, red sock boy and the rest of their friends entered the room. This was my third class with them now. I did not know why they fascinated me, but for some reason I was intrigued by them. My gaze was interrupted by the bell shaking the school. Mr. Rush continued to dart around for a few minutes before starting the class. We began music theory right off the bat. I almost fell asleep. It was hideously boring. F-A-C-E, A-C-E-G, E-G-B-D-F, G-B-D-F-A, sharps, flats, the repetition was mind numbing. Leah was feeling the same way and we found ourselves signing behind the stands. We discussed our fellow students throughout the entire class. Eventually the bell shook the school for the final time that day. Everyone jumped up and ran to their lockers. They was a fury of activity throughout the halls as students collected their belongings and ran for the buses. I didn't have a bus to catch since my mother had the day off. I observed the activity much like I had that morning. I watched from a different perspective this time though. I was no longer on the outside looking in. I was on the inside now. I still thought that my time spent there would be hell. One thing that I knew at that time, that I had not known that morning, was that the time I spent there would prove to be life changing. I still did not know how it would change me, but I knew that I would never leave that place the same person I was when I entered. Now it was time to sit back, ride through my adolescence and watch how I would develop and how this mysterious place would change me.

I heard words!

2008-12-17T13:07:00.003-05:00

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

The Reality of Inclusion

2008-12-16T23:50:00.002-05:00

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

Hidden Passion

2008-12-15T00:03:00.001-05:00

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

Vlogs! Pah!

2008-12-13T12:04:00.002-05:00

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

Hearing aids: Why, Why Not, and When

2008-12-07T23:47:00.002-05:00

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

Mr. Marley

2008-12-03T21:44:00.004-05:00

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!

Christmas and What I Like About It

2008-12-02T15:13:00.003-05:00

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

Blog Topics?

2008-12-01T17:23:00.002-05:00

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

'Terp Talk

2008-11-30T22:47:00.002-05:00

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

Respect

2008-11-24T21:36:00.000-05:00

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

Purple Hearing Aids!

2008-11-21T19:58:00.000-05:00

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!

Lessons Taught By The Unexpected Person

2008-11-04T01:29:00.001-05:00

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

2008-11-04T01:13:00.001-05:00

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

Audiologists

2008-10-29T00:13:00.001-04:00

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

More on identity

2008-10-27T16:50:00.000-04:00

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

Hearing Person Repellant - It Failed!

2008-10-25T16:48:00.000-04:00

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

Identity

2008-10-23T23:56:00.000-04:00

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

Hearing Person Repellant

2008-10-18T22:10:00.000-04:00

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

2008-10-15T18:10:00.000-04:00

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

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

2008-09-29T00:09:00.000-04:00

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

2008-09-13T20:37:00.001-04:00

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

2008-08-31T22:02:00.000-04:00

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

2008-08-24T22:42:00.000-04:00

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

2008-08-21T21:45:00.000-04:00

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

More hearing aid pictures!

2008-08-03T23:42:00.001-04:00

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...

2008-08-03T18:30:00.000-04:00

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

New molds, part 2

2008-07-31T23:36:00.000-04:00

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

New molds

2008-07-30T21:29:00.000-04:00

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

Pictures!

2008-07-26T15:28:00.000-04:00

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

I have it back!

2008-07-24T21:16:00.000-04:00

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

It broke again...

2008-07-17T21:45:00.000-04:00

Hey all!

I am hearing aid free for a few days! I am still trying to decide if this is good or not. I like not wearing them and that scares me a little. Every time I adjust to something, something else changes. I had just adjusted to wearing them again and then the right one broke. Still not sure exactly what caused it to break though. On Monday the battery in the left aid died and I was about to go to a meeting in an building very close to my audiologists. I had no batteries on me so I ran to her office to buy some I bought a pack and because it is me she wanted to change the battery and test the aid before I left just in case it was more than just a dead battery. My audiologist took both aids and changed the batteries and all was fine so I left. At my meeting my right aid started turning on and off again. I changed the battery again but it kept happening. I dealt with it for a day then went to her office but she wasn't there so the receptionist made me an appointment for this morning. I don't know exactly what is wrong but it was something with the battery door. She sent it in today so hopefully I will have it back early next week. My theory is that she broke it when she changed the battery. She didn't refute it so we are going with that! LOL.

She didn't have a loaner Naida for me which means I can't use any aids until the other one is back. Since they are so loud I need to have both or I feel off balance and can't really walk in a straight line. One of my jobs requires that I have my hearing aids on, so she gave me another loaner aid so I have something to put on and make it look like I am using my aids. Basically I have them on but there aren't any batteries in them. It makes the appropriate people happy and that is all that matters. I aim to please.

I went in this morning planning to be there for 30 minutes max and I ended up being there for an hour and ten minutes! We just got talking about a lot of stuff which was good because it was a lot of stuff that needed to be talked about. A little about past things, a little about the future. I think one of the things that I really respect about this audiologist is that I can be honest with her and she doesn't mind. I think we have a really good ongoing communication that allows for honesty on both ends and I trust her 100%. I really don't know how I could have done all of this without her. Now, 5 months ago I would have said something different but she has earned my respect and trust. I even like her which is more than I can say for any other medical professional in my life at the moment.

What else is new in the world of my ears? OH! This isn't really ears but well, kinda. Anyway, I have a few V-Logs that I want to get around to posting on here. Mostly just ranting about some stuff but still I would like to get them up. Now that it is written here I will have too!

I have to go to bed though!

Jenny

Long Time, No Post!

2008-07-12T13:16:00.000-04:00

Hey all,

I realise I haven't written in a long time. I have been very busy with work, friends, life, and of course - my ears.

Since the last time I wrote my audiologist was able to fix the off/on problem. It was a frimware problem that she was able to update and it has been much less frustrating since that has been fixed. My hearing has also changed again. I don't know the exact numbers now but I can say that my right ear more or less matches my left ear. As a result of the drop my audiologist adjusted my hearing aids and I started having an uneven feeling. I also hated the way everything sounded after she adjusted them and it was much harder to speech read as I had adjusted to having sound to support me. As a result, I stopped wearing my hearing aids. It had been about a week since I had stopped wearing them and I went back to see my audiologist to have new impressions taken for yet another set of earmoulds, and she adjusted them again. Since the new adjustment I can tolerate the hearing aids again. She made them a bit quieter and adjusted something else and I like it better. I told her to slowly adjust the volume back up to where it is supposed to be for my loss and hopefully I will be able to adjust if it happens slowly.

I have become a lot more shy about using my voice since the last drop too. I think I sound different, though everyone else has told me I don't. Regardless, I am nervouse to use my voice. When I was at my audiologists last week she said she was going to search out an SLP for me. She said that once before and forgot. Maybe she will forget again. She said it would be good to get on a waitlist so that I can start in the fall. I don't know about it though, I hate SLP's. When I mentioned that to her she reminded me I used to hate audiologists, but I like her. I don't think I like having an audiologist that knows me! Hehehe. I don't know - maybe it will be good and I will get over my fear of speaking. Who knows.

That is all I have time for right now!

Jenny

2008-05-21T02:41:00.000-04:00

Hey all,

My right hearing aid started turning itself off today. I am ready to through these stupid things out a window. They are fine for two weeks or so then BAM! They start turning off, or turning on and off, or having what I would describe as a hearing aid seizure. I emailed my audiologist today. Hopefully I will either get yet another replacement aid or an answer soon!

Some good news is that my ear infection seems to be nice and cleared up. I hope I can keep them to a minimum this summer. It will be hard to work if I can only use my aids sometimes. I really need whatever sound I can get at work since I work with kids. I need to hear crying and stuff.

Anyway, it is very late and I really need to try to get back to sleep. I crashed when I got home at 5:00 and then woke up at 11:45. Now it is 3:00am and I really need to get back to bed. I actually need to get up in the morning tomorrow!

-Jenny

And then the left aid...

2008-05-18T18:36:00.000-04:00

Hey all,

I have been kind of bad about blogging lately. Life has been crazy!

My left aid started the on and off game. I am not sure if I mentioned that or not already. I got a new left aid last week, and now for the first time in months have to functioning aids. I am so relieved to have that problem solved. I can now get down to perfecting the sound. I still can't understand speech, but I don't know if I am capable of understanding speech anymore. I don't think I have ever posted my audiogram on here. Here it is:

Freq. R L
250Hz 90 100
500Hz 95 105
1000Hz 85 110
1500Hz 90 110
2000Hz 95 NR
3000Hz 100 NR
4000Hz NR NR
6000Hz NR NR
8000Hz NR NR

Speech Discrimination-Could Not Test at 110dB

I am pretty sure it has changed since then. I know my left ear is worse. I am going to assume my right one is too. We haven't bothered to re-test though.

In other news, last week I was leaving my apartment (I live in a basement apartment) and I was walking around the side of the house. As I got to the gate I tripped and hit my head off of the fence. The fence post hit my earmold on a perfect angle to jam it into my ear and yet not hurt the aid or earmold at all. It hurt a lot! I took out my aids and didn't use them for a day so my ear could recover from the trauma LOL. On Friday when I put my aids back on I couldn't hear anything out of my left ear and it was still incredibly tender. I let it go for the day to see if it was just my allergies. At 3:00pm I still couldn't hear with my left ear so I went to see a doctor. I couldn't see my own family doctor, but I saw another one in the practice. I was pretty sure I had ruptured my eardrum and that was why I couldn't hear. Turns out I had a completely un-related ear infection.

The doctor was very alarmed that the ear infection would cause me to have no hearing in my left ear. It wasn't a bad infection and he was very concerned. He tried to refer me to see an audiologist but I refused. He said that the little extra conductive loss that I would get from an ear infection shouldn't cause my hearing to reduce that dramatically. He knew I am deaf, and he even saw my audiogram. I was getting very frustrated with him. He tried tirelessly to convince me that I needed to see an audiologist for further hearing assesment. I refused. In the end I signed a paper saying that I was denying further testing and care, and promised him I would talk to my own audiologist. I wouldn't have seen whatever audiologist he had refered me to until next week anyway, by then I can just deal with mine. I sent her an email telling her the situation. Hopefully she will agree that the doctor was crazy and not make me do anything. I hate hearing tests and she knows it.

OOH! Also, school problems are resolved! We have a new teacher for the last month and she is GREAT! She was so easy to 'train', it only took one reminder to not talk to the board. She is awesome! The desks are also in a circle now, so much easier! YAY! My audiologist wrote a letter to the school. It wasn't a mean letter or anything but it bluntly explained my hearing difficulties. It helped a lot! Anyway I have a million things to do so I probably shouldn't be writing.

-Jenny

And then there were allergies...

2008-05-06T20:04:00.000-04:00

Hey all,

Well, I think everything is squared away with the aids! Yay! I got my new right aid yesterday and it doesn't turn on and off every five seconds! I am happy happy happy!

That being said, my allergies are killer right now and I am all stuffed up. I hate spring! To top it all off I am going to be house/cat sitting for a friend for the next three days starting tomorrow, and I am allergic to cats. As a result of all my stuffyness my ears are all plugged up. I have been jacking up the volume on my aids so I can still hear. When I am no longer stuffy, hopefully Thursday when I get new allergy meds, I am going to have some very loud aids because of the stupid self learning thing that they do. I wonder if that can be turned off....I should look into that. If I am going to have allergy problems all season, regardless of what meds I am on. Maybe it wouldbe a good idea to turn off the self learning thing for the summer season, but then in winter I get ear infections and colds. Maybe I should see if it can just be turned off all together. I will check next time I see my audiologist.

Anyway, I have some seriouse researching to do for a new hearing related things. I am going to get on that and I will explain later!

-Jenny

And then there was the CI debate...

2008-05-01T11:18:00.000-04:00

Hey All,

I am note sure if I mentioned this is yesterdays post or not but I told my audiologist that I would go meet with the cochlear implant audiologist. I do not want a CI. I am sticking with that, but there isn't a harm in looking into it is there? I have read a whole bunch of stuff from Cochlear Americas, Advanced Bionics, and Med-el. I have watched all of their videos, and read all the stories from recipiants of their implants. All of them have the same story, 'My life was over and ruined by my deafness. Now I can hear and I am forever greatful. My life will once again have meaning and purpose." I have watched videos and read stories about people who hated their implants. I have looked into the medical complications, and the risks involved. I have spoken to people face to face about their implants. I have talked with people who love their implant and use it every waking hour, people who only use it when around hearing people, and people who used it for a few months and haven't touched it since. I think I have given myself a glimps of CI's from every side of the argument. I still stand firm, I don't want to do it.

Yesterday, for the first time, my audiologist told me she wanted me to go and look into it. She had never said she wanted me to go before. When I asked what she wanted me to do, or how she felt about it, she would always say it didn't matter to her. It was completely up to me and if I wanted to do it then she would arrange the appointment for me in a heartbeat. Yesterday, she actually said she wanted me to go. Knowing that she wants me to go, I told her yesterday that I would. I think my main motivation behind agreeing is making those around me happy. All of my hearing friends want me to get a CI. None of them can really understand why I wouldn't want it.

My circumstances are a bit different from most peoples. Yes I have a progressive loss, and yes I participated in the mainstreamed hearing world my whole life, but I have also been signing my whole life, and I have had Deaf friends my whole life. I truly feel as though I am stuck between two worlds right now. I think that going and meeting with a CI audiologist will give my hearing friends, parents, and my audioloigst some peace of mind knowing that I really did explore all of my options and I am making an informed decision. I do understand where my audiologist is coming from, wanting me to go, she just wants to ensure that I am making an informed choice and that she have given me every opportunity to do so. I get that.

I guess the previous paragraphs were me convincing myself that I actually wanted to go to this CI meeting. It was unsuccesful. I will do it anyway though.

In other news, my audiologist ordered me a new Naida for my right ear. I think it is a problem with the battery contacts. I have noticed that it mostly dies when I tuck my hair behind my ear, or adjust my glasses. I think that the little jostle it gives the hearing aid is causing the battery to lose contact with the...um...contacts. I should have the new aid next week. Hopefully this is it too. I need this all to be solved by summer when I start working full time. That leaves two months as of today. I know that seems like plenty of time, but me of all people, knows what can change in two months. A lot can change in two months. At least my thresholds have stabalized. My sensorineural ones anyway. My conductive thresholds are always going to fluctuate. My sensorineural thresholds are about 10-15dB better than my conductive ones. For my that 10-15dB is huge! I also don't want to be loosing more of my hearing to a conductive loss. My audiologist wants me to talk to an ENT about preventing it further. I am going to talk to my family doctor about it on Monday. See what she has to say about it. I know that for various reasons I wasn't a candidate for tubes when I was younger. Maybe that has changed now. We shall see.

Anyway, I have school soon so I should be heading out.

-Jenny

And then I had two ears...

2008-04-30T21:31:00.000-04:00

Hey all,

I went to my audiologists today to get my new left earmold! I am happy! I have two ears again! I guess I had two ears before too, with the temporary mold but I didn't use it very much. It was quite incomfortable.

Although having two aids again is a good things, I am not free from hearing aid related challenges yet...My right aid seems to turn it's self on and off as it feels it is necessary-which is far more often thatn I feel is necessary! It is frustrating. I will be in the middle of a conversation and then *BAM* silence. A minute or so later I here the little "doo doo doooo doot!" to let me know it is on again. It is annoying as sin! I asked my audologist about it today and she changed some stuff to see if it would help, and then I was walking down Church St. with one of my friends and silence. I don't get it. I sent my audiologist an email asking if she could program my left aid for my right ear and my right aid for my left ear until we have it figured out. I don't use my left ear so it is okay if that one turns on and off. My right ear I need!

I also talked to her about school stuff. I hate the school stuff. I don't want to talk about it right now, so I won't.

I just want this all to be over! I was reading over some of my old journal entries in my personal journal. I read the one from the first day I met with this audiologist. I found it kind of entertaining...

"I had an appointment with an audiologist today. I had another hearing test and as I
suspected my hearing has dropped. I had impressions taken for earmolds and ordered new
hearing aids and everything. I should have them in two weeks. I hate having to admit that
I need them, and I hate having to work with an audiologist again. I hate audiologists! Oh
well, I will only need to see her like 3 times. Once today, once for the initial hearing aid
fitting, and then once for a follow up fitting. This is a good thing because she was super
patronizing! She talked to me like I was a five year old, who knew nothing. She also looks
like she is fresh out of school, which often translates to being inexperienced, and not
knowledgable. I do not like her at all. I am not going to be bothered trying to find someone I
do like though because I only need to see her twice more. Then I can find someone else in
future. I can deal for now!'

I think that is so funny! I use that audiologist still and I love her! I wouldn't trade her for the world. She is the best audiologist I have ever worked with. Funny how people change when you give them a chance. I don't think she was actually patronizing -I think I made her out to be in my head. Although she is young, and fresh out of school, if she doesn't know something she will research it and talk to be people. I think I have come to value a willingness to learn in the medical professionals I deal with. I think it is much better than to have someone who thinks they know everything! I also find it funny that I was so insistant that there would only be three appointments, and it would be fine. I had appointment number 17 today. We have also emailed each other back and forth at least once a week since that initial appointment. It really is a good thing I don't hate her anymore!

Anyway that is enough for tonight!

-Jenny

And then I was sick...

2008-04-26T23:23:00.000-04:00

Hey all,

The good news is that last week my audiologist gave me a temporary earmold for me to use while I was waiting for a new one. The bad news is that I got a very bad ear infection so I couldn't use my hearing aids anyway. Thankfully the ear infection is cleared up now, but in it's place I now have a tonsil infection. I also had an allergic reaction to the amoxacillin that the doctor gave me. I have never been allergic to it in the past. It kind of sucks that I am now allergic to penacillin based anti-biotics because I am also allergic to sulfa based anti-biotics. Having allergies to both sulfa and penacillin bascially ensures me having to pay a lot for anti-biotics because I can't use any of the common ones. It goes nicely with my luck.

I get my new earmold this Wednesday and it is also my follow up appointment for the Naidas. I don't think there are many adjustments to be made which is nice. I do need to discuss some stuff with my audiologist though. School is getting harder, I don't know how much longer I can pretend that I can follow along. I don't know how much longer I can fake my way through the conversations and the academic settings. It is hard, I get tired, and I don't know how much longer I can pretend that I understand everything. My audiologist is aware of the problems with school and said she wants to talk about it when I go in on Wednesday. Hopefully she will have some ideas or answers for me.

Even with the frustration I am still holding my ground on the cochlear implant choice. It isn't going to happen, as least now. Maybe in the far off future I would consider but right now, not a chance.

Anyway I am sick, and want to sleep. I will update after my appointment on Wednesday.

-Jenny

And then there was the good...

2008-04-17T22:08:00.000-04:00

Hey all,

The good has started to come rapidly from the aids! I have been wearing them despite the discomfort caused by the earmold because I love them! Last night, after only having them for 48 hours, I was in a board meeting and I was starting to hear words! What I was seeing and what I was hearing were starting to match up! It was awesome! Then today I went to school and the other students and my teachers told me that my own voice sounded 110% better!

None of this came without work though. Since I got them I have been watching so many news broadcasts so I can read the person and hear them. I have been working harder at this than anything else in my life! I have been working on my own speech to. Working on making it sound the same as other peoples. I am so excited to go to my audiologist tomorrow and see what she says about my speech! It will be the true test! Yay!

That being said, tomorrow I am going to get another impression done for a new mold for my left ear. She is also sending the mold that I have now back. This means no left hearing aid for an undefined period of time. Last time it took two weeks to get my news molds. This is not good. I have become very dependent on my aids in a very short period of time. I need the sounds. I think I can use the right one alone provided I don't try to walk, or drive with just the one. If I am sitting I don't get to dizzy or off balance feeling. I am hoping I can still use the right one at school, work, in mettings, and so on until I get the left mold back. I don't think I am getting much from the left aid anyway. My thresholds are much worse in that ear. I am mostly getting some environmental sound from it with the aid. It helps with balance too. I walk like a drunk person if I only wear one. Hopefully the earmold situation can be rectified sooner rather than later!

Yay for new hearing aids!

-Jenny

And then there was pain...

2008-04-16T15:28:00.001-04:00

Hey all,

In true Jenny style things are no longer going smoothly with the aids. The left earmold hurts. There is definitely a pressure point or two. I went to my audiologists office today and she filed it down a bit but it is still hurting so she wants me to get a new earmold. This means going in, doing another impression, and waiting even more! I hope she lets me keep the earmolds I have now until I get the new one. I really like my hearing aids and thus far I have had great success with them! I really don't want to have to go without them again. AH! I am turning into one of those hearing aid dependent people that I always vowed I would never be! Hopefully I can get in to see my audiologist soon and do the new impression, get earmolds that fit, and then move on in my hearind aid journey.

I sometimes wonder how my life would be different if my ears were fully functioning. It would certainly be very different. Would it be better? I don't know...

-Jenny

And then I had my aids...

2008-04-15T19:11:00.000-04:00

Hey everyone!

I have my new hearing aids! I am sooo happy! I went today at 2:45 and got them! It was nice because my audiologist had already done all of the programming so it really reduced my appointment time.

It has been a month since I last had aids and I am over joyed to have them again! I have Naida V UltraPowers and so far they are pretty good!

I can hear people speaking but it isn't speech. Basically I am hearing sounds but they don't make sense and/or words. I understand that that might take time, up to three months or so I have been told. That being said, when I listen to a song or something that I know I can pick out words here and there.

I was at a group meeting tonight and there were about 20 people there. I was able to tell which direction the sounds were coming from and therefore easily identify the speaker and read them. That being said, the since I am only getting sounds it is very difficult to speech read. I find myself focusing a lot more on it, and asking people to repeat themselves more often. Hopefully this will improve with time.

I also seem to be having some feedback problems. Though I can't hear it, those around me can. I have been asked a few times now why my head is squeeling.

Nothing sounds the same as it did with my old aids. I don't know how much of this is the Naidas, and how much is my current hearing thresholds. I will talk to my audi about that next time I see her.

Over all I am fairly happy with the aids! If anything I am getting environmental sounds which was all I really wanted. They are keepers for sure!

-Jenny

And then it was the day...

2008-04-15T10:25:00.000-04:00

Hey y'all!

Well today is the day! I am going at 2:45 to get my new hearing aids, the Naidas! Yay! I would love to write more about how excited I am but I have a job interview soon to so I have to go! But YAY!

-Jenny

And then there was one more day...

2008-04-14T22:25:00.000-04:00

Hi all,

Well, one more day went by in my life without hearing aids. I did get an email from my audiologist this evening though saying that my earmolds would be in her office tomorrow at 10:00am and she would email me as soon as she gets them to arrange for me to go in and get the aids! That is something at least! I was driving when I got the email (via my BlackBerry) and I was so excited I emailed her back right away and nearly killed myself and several other people. I am going to take that lesson and learn not to text, or email people while driving. Anyway, hopefully I will get the aids tomorrow, if not before the end of the week.

I had a bit of a rough day. I just really want my hearing aids! For most people who have a profound loss, or even severe loss, their lives stop without their aids. I am lucky enough to have the skills to get by without them. My speech reading abilities are superb and I speak quite well too. That has made this month of silence a bit better. At least I am not condemned to a life of solitude without them! I am forced to work 100 times harder to communicate though. There is only so much complaining about not having hearing aids that I can possibly subject a person to. I think this is enough for tonight. We shall see what happens tomorrow!

-Jenny

Edit: "For most people who have a profound loss, or even severe loss, their lives stop without their aids"- let me clarify by saying oral people with a profound or severe hearing loss.

And hopefully tomorrow is the day...

2008-04-14T01:11:00.000-04:00

Hey everyone,

Well, it's Sunday night. That means that tomorrow is the earliest ETA for my earmolds and therefore my fitting with the Naidas. I am getting very excited because I should have my hearing aids this week without a doubt! I am really looking forward to having some sound again. I live in a hearing world and I need to be able to easily interact with hearing individuals. Although I can make it look easy when I communicate via speech reading and Spoken English - it is hard as hell! I get frustrated very easily, and I am exhausted by the end of the day. It takes all of my energy to negotiate my mainstream school for the afternoon. The fact that I need to take a nap after school is so frustrating for me because I am the kind of person who likes to go, go, go without distractions. I know I seem stupid for not wanting a CI, but I just can't do it. I am not against those that have them but it just doesn't seem right for me. I just want my hearing aids!

This is the first time in my entire life when I really NEED hearing aids. When I got my last set I did become quite dependent on them. I wouldn't have a conversation without them, unless it was with my audiologist. I didn't like not being able to hear what the other people were saying. I also didn't like not being able myself clearly. It was horrible! Luckily I never had to go without them. Now I have been in silence for one month. It was one month today that I went to see my audiologist and we did that audiogram that revealed the profound loss. It was one month today that I sat in waiting rooms for several hours, to see several doctors, who all told me several times that there was nothing they could do. It was a month today that my hearing aids stopped helping me. Now a month later, I am still waiting for my new aids and frustrated beyond belief.

In this past month I have almost dropped out of school, almost moved back to Kingston, almost quit life in general, and then pulled myself back up out of sheer determination to over come whatever is placed infront of me. I have seen more doctors than I can count on both hands in the last month. I have had 5 audiograms done in the past four weeks, and had more people look in my ears than I can count on both hands AND feet. I finally called all of the doctors appointments off and low and behold my stress levels greatly reduced and I was able to refocus my life. I have redirected my energy to deciding on a Univeristy, and finishing highschool.

I think everything is starting to come together and slow down a bit for me, which is more than good. I need a breather for at least a week! Once I get my aids that should be able to happen. I can't wait calmly for them much longer! I hope I get them tomorrow, but it's me. So I won't. I know it though, so it's okay. This week, if I can just get them this week - Please, this week. Please.

-Jenny

And the waiting continues....

2008-04-12T21:23:00.000-04:00

Hey all,

Last week I emailed my audiologist to see what was up with the Naidas. I was getting very anxious to get them because their success or failure will dictate my choices for Univeristy next year. My audiologist emailed me back saying that though she had the aids in her office, the new earmolds weren't there yet. She said that she called the person making the molds who said that he would get them to her on Monday, or Tuesday at the latest. With my recent luck this means I should hopefully get them by next Friday. Pardon my pessemism.

In other news I have started ASL classes. I am taking a beginner class because it was all that was available. That being said I am also exhausted by the end of the school day and I don't think I could honestly keep up with learning anything by that time of night. I am really enjoying the class though! It is easy yes, but the teacher is great and I am learning stuff from signing with her. It is great to be in a situation when I don't need to talk or speech read for 3 hours once a week. For once communication is equal for me and hearing people. It is wonderful!

I guess my recent happiness relating to ASL class, evens out my recent despaire regarding my hearing aids. Hopefully I will get them soon!

-Jenny

And then there was more waiting...

2008-04-01T16:58:00.000-04:00

Hey everyone!

Well good news, and not so good news. The not so good news is that I now don't get the hearing aids until the end of the week. The good news is that I got to try them for about 15 minutes yesterday and I heard my audiologist speak! It was awesome! That being said I couldn't tell what she was saying without speech reading too. It was just sound, it wasn't speech. Everything sounded really muffled, and mumbly. But hey! I heard something! Both the Phonak rep that was there, and my audiologist said that my ability to understand the sound should improve with time and practice.

My audiologist also took impressions for new earmolds. I am really hoping that there is a more hypo-allergenic soft material that we can use because I really don't want hard molds. They are uncomfortable, or at least I think so.

Why can't I just have fully functioning ears? If they can't hear things for me the least they could do is not be allergic to things trying to help me. That would be simple though, and it is me that we are talking about. Anyway, I am anxiously awaiting the end of the week! I want these new hearing aids!

-Jenny

And then it was the big day...

2008-03-31T11:46:00.000-04:00

Hey y'all!

Well today is the day I get my new aids! I am going to get them in 2 hours and 15 minutes! I have been so excited that I couldn't sleep at all last night! I have never been this excited, or excited at all, about hearing aids in my life! I can barely contain myself! I am trying not to be too excited incase they don't help me but it is so hard!

I had a friend call and cancel my doctors appointments today. No more doctors for me! We shall see what my audiologist says. I have a page worth of defences prepared if necessary! AH! I am too excited to focus on writing anything right now! I will report on the new aids when I get back!

-Jenny

2008-03-31T01:11:00.001-04:00

Hey y'all!

Well, it has been decided! No more doctors for me! At least for the time being. I need to focus on stuff that can actually have an impact on all of this, like working to get the most out of the new hearing aids (which I get tomorrow!), finding/working with a good SLP, and bringing my ASL up to speed. I don't need to waste my time with all of these tests, and doctors appointments especially now that I know this is probably genetic. So that is it, I am done. I am going to tell my audiologist at my appointment tomorrow. Hopefully she will go along with my plan. I want to continue to work with her, just no more doctors. We shall see what she says!

-Jenny

And then there was the ENT...

2008-03-29T00:48:00.000-04:00

Hey all,

Today I had an appointment with my ENT. I have been officially diagnosed with a rapidly progressive sensorineural hearing loss, I knew this already but a doctor has said it now. He doesn't know why though. He offered to put me on a week long course of high dose steroids but I decided not too. The risks aren't worth the incredibly minute chance that I will recover any of my hearing. If it were to work too it probably wouldn't be a noticable change for me anyway. And really, do I care if I can kinda, sorta, barely hear 2000hz at 120 db? I don't think so personally. I saw an audiologist at the hospital too. She did another audiogram (I am getting sick of those) and pretty much the same as my last one. I didn't respond to 2000 or higher in either ear, and the lower frequencies were all in the 90-120 range. I had one frequency, I think it was 250hz. in my right ear at 85 which was a bit better than my last test.

The audiologist was bad though. She made me take off my glasses and without my glasses I can't see to speech read. She kept trying to talk to me and I kept telling her I couldn't understand her without my glasses, so what did she do? She wrote me a note. If I can't see well enough to speech read, how can she expect me to read a note? Anyway that was frustrating. Then after the testing she tried to tell me that my loss was in the severe range because I tested at 85db on the one frequency. She couldn't even do a speech discrim test, and my SRT was 95. With all of that she argued that it wasn't a profound loss. And with the bone conducted test she told me to tell her if I could feel it, or if I could hear it. So I pressed the button when I could feel it, but I never heard anything. She then tried to tell me that feeling it was the same thing as hearing it. Which it clearly isn't. I know the difference and my audiologist lets me ignor it when I can feel it and tell her when I can hear it. I tried to tell this other audiologist that I could tell the difference but she was insistant that I couldn't. So I argued with her enough that she finally write Vib beside all of the <'s and >'s so that my audiologist and the doctors would know that I couldn't actually hear it but I felt it. Anyway that was my day...

After all of that I went straight to my audiologists office. No appointment or anything just to give her a copy of the audiogram from the hospital. She wanted to talk to me while I was there and she went over the audiogram with me, and talk a bit more about the Naidas, which I get on Monday. We just went over stuff, no new info really but now she is up to date and can use todays audiogram to program the Naidas on Monday.

The ENT wants me to go back at the end of April for another test. He wants to do a BAER test on me. I don't know if I want to go do more testing. I don't think it will change anything. I have dealt with a lot of medical problems through out my life and I have stumped many doctors who just want to find out why something is happening. The answer to why doesn't change anything, they just want to know. I have already been told that there is no 'why' so far, and if they find one it won't change anything so personally, right now, I don't see the point of this test. I have always had a progressive sensorineural hearing loss, this isn't something new. It just progressed a bit faster in recent months. I am just sick of doctors and want to focus on school and things that are more important to me right now. I know my hearing should be important but it's not going to come back so why should I still be worrying about it? I would rather invest my time in trying to work with the new aids, and speech therapy, and things that can be worked on. Not doing more tests to find out nothing that will help. That's just the way I am...anyway that is enough for tonight!

-Jenny

And then there was the day I signed up for ASL...

2008-03-26T19:45:00.000-04:00

Hey all!

Today I went to George Brown College and signed up for beginner ASL. I have a feeling the course is going to be a breeze for me because I already know a fair amount of ASL but I am looking forward to being in a completely ASL environment at least once a week. I am yearning for any kind of Deaf culture. Just knowing that the instructor is Deaf makes me excited to go to the class. I need to be around other Deaf people. This should be a good experience and if nothing else get me a little more networked in the Deaf community here! Yay! I am excited!

I was also surprised at how many students I saw wearing hearing aids and/or signing at the school. I can't wait until my class starts! One week tomorrow!

-Jenny

And then there were more problems...

2008-03-25T23:03:00.000-04:00

Hi all,

Today I saw a general practitioner at the same clinic as my family doctor. I went to see the doctor because I had a sharp pain in my left ear. I was hoping it would be an ear infection because that would be a nice and simple answer. Of course, the doctor didn't see any sign of infection. She did however see something in my right ear. She said that the entrance to my right ear canal looked red, inflamed, and 'bumpy' and she said it could have been caused by my earmold. Maybe an allergic reaction.

Being allergic to my earmolds is the absolute last thing I need right now! Hopefully my audiologist will be able to tell if I am allergic to them or not soon. I guess possibly needing new earmolds isn't that big of a deal. It's not a time consuming endevour, and my right mold doesn't have a good seal anyway. I sent my audiologist an email and hopefully she will tell me what she thinks I should do tomorrow! I am ready for this all to be over!

-Jenny

And then there was another week...

2008-03-24T23:50:00.000-04:00

Hey all,

My audiologist emailed me today and my appointment to fit my new aids isn't until NEXT Monday at 2:00PM. That is a whole week away! I have been in silence for almost two weeks now. I am getting used to it but I am very anxiouse to find out if these aids will work for me. If they do work it would be fantastic! That being said, if they don't lots is going to have to change.

I guess lots is going to have to change anyway. Even if the aids help, I am still going to have a profound hearing loss. The aids aren't going to 'fix' it. I am not looking for a fix. If there was one I would probably do it but only if it was guarenteed. I was offered steroid treatment just after the sudden loss but the ENT doctor told me that the risk was huge compared to the very very minimal chance that I would benefit. He also said it may not be smart with the asthma meds I am on. He left it up to me and I decided right away not to do it.

There is also the option of a CI. My audiologist is setting up an appointment with me to see a cochlear implant audiologist who will do a full assesment of my hearing and discuss my options. I have already decided that at this time I don't want a CI. It just seems really invasive for me at this point. Since I am adjusting to my silent world really well so far I want to wait a while before putting myself through surgery. I would need to make sure it is 100% what I would want to do before I were to do it.

The journey is just beginning and the next scheduled stop is this Friday at the ENT clinic at Toronto General Hospital. Hopefully I will able to stick to the schedule for the remainder of the journey, if not I will take all of the bumps, twists, turns, and even crashes in stride.

-Jenny

And then the speech went...

2008-03-22T02:50:00.000-04:00

Hey all,

I was talking to a few people today and I have been told I now have a 'deaf voice'. I wasn't sure if it would happen or not, and clearly it has. I don't know how bad it is yet but I will be seeing my audiologist next week so I will ask her. Whenever I speak to someone I know they give me a funny look and ask me why I am talking funny. It kind of sucks. Oh well...c'est la vie!

-Jenny

Rough day at school...

2008-03-21T17:06:00.000-04:00

Hey All,

I go to a small alternative highschool and that means a small tighy knit group of students, right? Wrong!

The other students know I am deaf, they know I wear hearing aids, and they know I don't always respond if they call my name. When I lost the vast majority of my residual hearing a week and a half ago I didn't expect that I would have any problems with my classmates. Yesterday I was sitting in the classroom while we were on break and two of my classmates were sitting near me. Apperently they started talking about me and were talking about how it was funny that I couldn't hear them. It was just stupid and juvanile. The teacher told them to stop, but none the less it is frustrating. I know I shouldn't concern myself with imature individuals but it still hurt me when I was told what they were doing.

-Jenny

A little bit about me...

2008-03-20T22:20:00.000-04:00

Hi Everyone!

Well, this is my first blog post! It's kind of exciting!

To start things off I will tell you all a little bit more about me! My name is Jenny, I am 18 years old, and I live in Toronto Ontario. I am currently finishing up high school, working, and figuring out how I want to live my life in the future. To say that I have a busy life is a bit of an understatement. Up until one week ago I spent my time going to high school, taking a course at a Univeristy, taking dance classes, singing in a choir, working at two different jobs, and when I had a free moment hanging out with my friends.

Then one week ago on Wednesday, March 12, 2008 I noticed that there was a sudden drop in the hearing in my left ear. I didn't think much of it at the time, having dealt with cronic ear problems and hearing loss for my whole life. It was some what normal for my hearing to fluctuate because of infection, or pressure changes. The following day I noticed another drop. This one was late at night and did concern me. I had none of the symptoms of an ear infection, perforated ear drum, or pressure changes. I was a little worried at that point but it was late at night and I had an appointment with my audiologist in the morning to make some programming adjustments to my hearing aids.

I woke up on Friday morning and the hearing still hadn't come back. I went to my audiologist and told her what was going on. She first checked my hearing aids and they were fine. She looked in my ear and everything was fine, she tested the pressure and everything was fine. She then suggested that we do a quick tone test in my left ear. She said just with the inserts, no bone conducted test, no test with the head phones, just to see where I was at. So she tested my left ear and then came into the booth and said she was going test my right. She tested my right ear and then came in and said she wanted to test me with the head phones. She tested both my ears, came back in, and said she wanted to do a bone conducted test. She tested both ears, came back in and said she was going to try the bone conducted test while masking my other ear. Very quickly this quick test of just my left ear was turning into a full audiogram. She finished the testing and sat me down and told me not only was my hearing dramatically worse in my left ear, but my right as well. We looked at the change that had occured since my last audiogram, just a month and a half previous. The last audiogram showed a 60-90db loss, the new audiogram showed a 90-120db loss with a few NR's.

My audiologist said she wanted me to see and ENT right away and tried to arrange for me to see one that day. The ENTs that she knew were all on vacation (it was March break so anything with a child was on vacation) Neither Toronto General, or Mount Sinai hospitals had an ENT that I could see, they were all on vacation. My audiologist then told me to see my family doctor and try to get an ENT referral from them. I couldn't get a hold of my family doctor so I went to the hospital that she is based out of, and waited in their urgent care center. It took two hours to be seen by a doctor but when I finally saw one she got me a referral to see an ENT at Sunnybrook Hospital the following Monday, this meant waiting the whole weekend. I talked to my audiologist and told her this. Apperently she then called the ENT and was very firm that he saw me that day. I got an appointment and headed to the hospital right away.

The ENT told me the loss was permanent. He didn't examine me at all and just took what my audiologist said to be true. I trust my audiologist 100%, but the fact that he didn't even examine me, and said it was permanent anyway was unnerving. I went right back to my audiologists office, by now it was 5:00 PM and my first appointment with her was at 9:00AM. She was going to adjust my hearing aids and bump them up as high as she could. My aids are Phonak Savia Arts, they are good aids, but they don't have as much power as I need now. I get only very limited environmental sounds from them. My audiologist ordered me Phonak Naida's that should be in next week. I am very excited to try them! She had also secured me an appointment with and ENT at Toronto General for the 28th. She made this appointment while we were looking for an ENT to see me that day.

On Tuesday, March 18 at about 1:00AM I noticed that there was a warm sensation in my left ear, and then the tone of my tinnitus changed. After the sudden hearing loss my audiologist made me promise that if anything else happened I would get it checked out right away. Not wanting to deal with the wrath of my audiologist, I went to Toronto General at 2:00AM. I had my friend call ahead to let them know a Deaf person would be coming in. I got there and signed the sign in sheet and went to wait. I spent 5 hours in that ER waiting to see a doctor. I dealt with a nurse who wouldn't look at me when she spoke, another nurse who accused me of ignoring her, and a drunk man freaking out at me. All in all it was a wonderful experience. I finally saw a doctor after 5 hours and he said he didn't know what was happening, there were no signs of infection and he wanted me to see an ENT. I waited another two hours to see an ENT resident who said there was nothing he could do and to go home. I emailed my audiologist and told her what had happened. She wanted me to come in that afternoon to make some programming adjustments to my hearing aids, so I went home, slept, and then went to see my audiologist.

We made some quick adjustments to my hearing aids and then she said she wanted to do another quick test, just my left ear with the inserts (where have I heard that before?!?!) The situation played out much like the one on the previouse Friday and it quickly became a full audiogram. This time she even decided she wanted to do a speech discrimination test too. The last one I had done was on January 25, 2008. I had got 84% at 105db. I got 0% on Monday.
The new audiogram revealed aother 10db of loss, putting me at a 90-120db loss still but with many many more NR's.

We don't know if it will drop more, there is no way of telling because we don't know why it is happening. I have an appointment with a cochlear implant audiologist, another ENT, and many more appointments with my audiologist coming up. It is going to be a busy few weeks while I decide what to do....and that's me!

-Jenny