Audiologists

Hey all,

I want to continue my thoughts on audiologists today.

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

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

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

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

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

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

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

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

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

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

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

Jenny

More on identity

Hi everyone,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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


Jenny

Hearing Person Repellant - It Failed!

Hi Everyone,

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

Jenny

Identity

Hello again!

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

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

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

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

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

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

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

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

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

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

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

That is all for tonight,

Jenny

Hearing Person Repellant

Hi everyone,

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

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

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

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

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

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

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

That's all for today!

Jenny

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