My Triumphant Return

...To blogging and the frustrations of job hunting

Oh my! You thought I died in a plane crash on the way home from Milwaukee last summer, didn’t you? Well, I did not. I’m still alive, though I can’t really say “well.” I’ve been going a bit insane looking for a job over the past three months. I have a degree! I can write. I can edit. I can organize. I can use a copier, a fax machine, a scanner, the internet, and all your basic Microsoft Office programs. Now will somebody please hire me? I’ve had all kinds of things I could have written about in terms of my experience as a young person with hearing loss over the past few months, but I was either too busy working or too busy trying to find work and better techniques for doing so.

I’ve been attending workshops at the One-Stop (a place for job seekers organized by the state) and they all say that staring at job boards all day is not the way to go about getting a job. The real trick is networking. Well, that’s all fine and dandy, and I do the best I can using social media sites and whatnot, but what about real, human, face to face interaction? Let’s say I go to a job fair. There are a hundred people in one room, most of them trying to get a job, and all of them talking at once. My head is reeling. I try talking to a few people, but I just end up nodding as if I heard what they said, when I really didn’t hear more than a few words. The one thing I do understand is that they aren’t looking for English majors. I even joined Toastmasters and used this phrase in my first speech: “Job fairs aren’t exactly hard of hearing friendly, but then again they aren’t exactly English major friendly either.”

I can’t even manage turning ordinary social events into networking opportunities. I was at my cousin’s wedding reception yesterday. They had a DJ booming music inside. Most of the people outside were busy supervising children in the bounce house. Before the wedding I made a few business cards to hand out, but with my hearing loss and introversion I found it nearly impossible to talk to anyone who wasn’t already familiar with me and my hearing loss. It was quite frustrating.

Don’t even get me started on the difficulty in determining how much to disclose about my hearing loss to potential employers. I know the laws, and I know that they all claim to be “equal opportunity employers,” but I can’t help but wonder how much of an influence my hearing loss may have on their decision, consciously or unconsciously. My hearing loss (and my introversion) are what the people at the One-stop call “barriers to employment.” That isn’t to say I’m not in the midst of trying to overcome them, but it’s sure been a challenging ride.

I'm Off!

I'm leaving for the airport to go to the convention in about half an hour. Be sure to follow me at

http://hlaaconvention.blogspot.com

Sorry, no time to fidget with it and make it a link. Just copy and paste.

HLAA Convention

Check it out. I'm going to be blogging for the HLAA convention.

FYI: Whatever blog updates I make in the next 2 or 3 weeks or so will most likely be on there.

Music and Cool Gadgets

I've been working at my current temp job for over a month now. My boss had said long ago that I could bring in an iPod or something of that sort to work so I don't die of boredom. (I'm doing some really tedious work organizing a room full of personnel files, but hey, they're paying me a real wage, so I can't complain). I tend to feel kind down when left to my tedious file sorting, but since I started listening to music while I work I feel a lot better. I guess music therapy really does work. In fact, I have a friend graduating with her degree in music therapy tomorrow.

Anyway, it took me a while to figure out how to go about finding some sort of music player to bring in. My new hearing devices are cool since I can’t stand headphones. They’re either big and bulky and irritate the back of my ear, or they’re tiny and irritate the inside of my ear. Either way, I have to trade my hearing aid for them and vice versa if someone wants to talk to me. That’s why the iCom and Phonak Versata are so cool. Unfortunately, I don't own an iPod, and my walkman cd player is a bit unwieldy and would take up too much space on the already-cluttered desk. My only other choice was a cheap mp3 player that holds about 30 songs on it. So I ended up using my mp3 player and I'm just about to the point where I'm getting sick of the songs that are on there. They're all good songs, of course. In fact, sometimes I try to quietly sing along, because if I sing too loud I'm likely to be thought of as the crazy girl working in the file room. My cousin read my facebook status and said,

“Sing and dance girl! Who cares if you look crazy. At least you are enjoying yourself. If it makes people around you smile then your listening to music has made their day better too” to which I replied
“ Even if Good Day Sunshine is a happy song, I doubt my singing is going to make anyone’s day better.”

Oh well. The music helps the day of tedious work go by faster at any rate. My boyfriend also said he might give me his old iPod shuffle and buy himself a new one. It sure would be an improvement on what I’ve got, but even with my little digital mp3 player I still feel like the “cool kid.” When I’m in my file room I’m off in my own little world. Remember that cool hearing aid I got a couple months ago? It’s pretty awesome. Even though I haven’t gotten anything except my cell phone to connect with my iCom device wirelessly via Bluetooth, I can plug the device into any headphone jack for audio output and listen directly through my hearing aid, no bothersome headphones necessary!

Even though I’m pretty isolated most of the time, every once in a while someone will come in and ask me something. They don’t know right away that I’m listening to something. I usually have the device around my neck and the wire connected to the mp3 player in my pocket, but I may or may not be listening to music. No one else can tell because I’m not wearing headphones or anything. Someone starts talking to me and I’ll tell them to hold on a second. Seeing me press the button, they’ll start talking again, and I’ll have to tell them to wait just one more second. Because the iCom and mp3 player are connected to my hearing aid it takes another second for the hearing aid to recognize that there’s no sound coming from the device and reconnect me with the real world. When I explained how it worked to my boss she thought it was so cool that she had to bring me over to our co-worker’s office so I could show her, too. Everyone I explain the devices to is pretty impressed, and here I thought I was lame because I don’t have an iPod… I guess my gadgets are pretty cool after all.

Some Exciting Updates!

I've been pretty busy with work and work related issues. I haven't posted anything at all since I started a temp job at the beginning of April, but I have good reason to get back into blogging mode... Today I received an e-mail from Nancy Macklin, Director of Events and Marketing for HLAA, and she offered to make me the OFFICIAL BLOGGER for the Hearing Loss Association of America's national convention in Milwaukee next month! Also, I haven't blogged in so long, I never announced that I'd won a scholarship to the convention! I and 5 other young adults each received a complimentary convention package as well as $500 for travel and accommodations. This was in addition to the two Rocky Stone scholarships for this year's convention.

If anyone has never gone to an HLAA convention and is interested in going next year, be sure to apply for a scholarship at the beginning of the year (applications are typically due by the end of March). The scholarships are only for first-timers and HLAA is always trying to encourage more young adults to attend!

I attended a leadership training for the Southern California division of HLAA in March which was fun. A lot of it was for leaders of established HLAA chapters,
but it was informative nonetheless.

Let's see, what else? My hearing aid is working fairly well now. Turns out the beeping noise I thought was some sort of "interference" was just the low battery warning.
My old aid supposedly had that but I never heard it. It just sort of gradually went out. The volume control is awesome. I didn't have that one on my old one. The t-coil for landline phones is a lot better than the one for my old one. I wish I could tell if it works well in looped rooms, but I never come across any. With all this HLAA talk maybe I should actually attend a meeting to try it out. They always have the room looped.

Other than HLAA stuff, I also missed an opportunity to spread the word about the awesome new documentary "See What I'm Saying!" It's about 4 deaf performers and includes spoken words, ASL and captions! It's the first commercial film of its kind in that respect. It was really inspiring and I could especially relate to a lot of what
hard of hearing singer, TL Forsberg, had to say about being hard of hearing in a hearing world with a completely separate Deaf culture. I saw it with some friends in LA
on opening weekend and it was amazing. Seriously, if you're Deaf, deaf, hard of hearing, hearing impaired, have fully functional hearing, I don't care what your status
is as someone with a hearing loss or not, go see it! Apparently with help from people like me and my friends spreading the word the film is doing really well and has been opened up for more screenings in LA and around the country! So go see it! Look for local showings and show your support for this amazing film. Tell all your friends. It really is an inspiring flick.

The only other new thing I can think of is the fact that I'm having some issues with a certain job position right now and I'm investigating to figure out if I might have an EEO (equal employment opportunity) or ADA (Americans with Disabilities Act) case here, but first I'm going to try to rationally settle the dispute. It's rather personal and I'd rather not get everyone up in arms about equal rights if I can calmly come to a reasonable agreement with said employer. That said, I think I may have covered everything. I'll be sure to post again soon, so if I can think of any other updates I will be blogging about those in the near future.

Technological Advancements

They're really great, aren't they? Especially for the hearing impaired. I haven't updated in a while. I've been focusing on the job search. However, I have some very important updates, to be detailed further in another blog when I have more time and have discovered more about these things. Anyway, here are three technological advances that have either affected me or I hope will have a positive effect on my life and the lives of other hard of hearing, hearing impaired, deaf, and Deaf people in the near future!

1) Google announced today that auto captioning will be available to everyone! I'm excited. The sample video of Obama's speech about the earthquakes in Chile looks really good. Read the official YouTube blog for more information. I will update as I learn more about this, but the update was just made today.

2) I've been hearing more and more about a kind of captioning glasses- similar to the concept of 3D glasses- that have been developed by a group of grad students at UCLA. I missed the opportunity to attend a focus group to test these glasses, but I hear they're trying to figure out how to market them in the near future. This is such an awesome idea. With these glasses everyone who wants to see captions would be able to, and those hearing people who are bothered or distracted by captions won't have to see them. It's really an ingenious invention. Sure movie theaters offer a limited number of captioned showings of each movie they play, but I don't think it's enough. At any given theater, they will show a movie with captions for 2 or 3 days, 1 or 2 showings per day, during the whole month they're showing the flick. Who says my friends and I aren't just as busy as "hearing" people? Who says we can fit our schedules together during such a small time frame? Well, the movie theaters say we should be able to or just wait for the film to come out on DVD. It's just not right. I'm hoping these glasses get on the market soon, because they'd definitely solve the problem. Then again, waiting for DVD has its advantages, too. For one thing you can rent a DVD for 5 bucks instead of paying for tickets at 10 bucks a pop, plus whatever buying or renting these glasses might cost. Ideally they would be widely available for free to those who need/want them for accessibility purposes, but we do not live in a perfect world, so I suspect that it may cost us something to use this great new technology. It would definitely be worth it, though. I'll post more once I learn more about them.

3) I recently got my new blue tooth enabled hearing aid, the Phonak Versata P in cobalt/black and was scheduled to go in for a follow up today to tell the audiologist what needs to be adjusted. However, that's not going to happen until tomorrow, and boy do I have reasons to complain. I've only been wearing my new aid off and on because it bugs me so much. Oh, don't get me wrong. The blue tooth is awesome. Of course, I'm still getting used to the fact that I can just press a button on a device around my neck to answer the phone instead of searching the room for my phone, and there's a bit of interference, but for the most part it's been cool. I haven't gotten it to connect wirelessly with my laptop yet, but the device I got with it can be plugged into any ordinary headphone jack for audio input. It's still a pain to be plugged into my computer, but it's so much better to be hearing directly from my aid instead of having to take it out and put on huge headphones that press my glasses into my head. The most annoying thing that's been happening is that the interference- at least I think it's the interference- causes any little bang, clang, clap or snap to trigger a loud popping noise directly in my ear. I have to either switch out to my old hearing aid or put it on mute in order to do the dishes. Otherwise I'd go insane. The click, click, click when I turn on the gas burner on the stove? Pretty much unbearable. Sometimes even just typing loudly can trigger it. I'm hoping either it's something temporary or that it's an easy fix. Otherwise I really am likely to go insane. I started hearing this "beeeep beeeep", like one of those emergency tests on television, and it was getting more frequent with time. It took me a while to figure out that maybe it was an indication that the battery was low. My previous hearing aids supposedly had "warning beeps" but I never heard them. My aid just sort of slowly died. I'd be able to turn it off and on again and get it to work for another 5 minutes a few times until it finally died completely. I was also told that with my old aid my batteries would each last about two weeks, but this one seemed to go much faster. I don't know if it has to do with how often I've been plugging it in to the computer or what, but I changed the battery and guess what? The beeping has stopped. We'll see what happens at the audiologist tomorrow. It would be really cool if I could get this thing to connect wirelessly with my computer. We shall see.

YouTube

So I just submitted this blog for a possible "unpaid social media internship." It sounds like I'd be getting to do the same stuff I always do, but I'd get to put on my resume that I did it for a company, albeit one that's just starting up. Anyway, here it is.

The day I discovered YouTube was a very unproductive day. Here were thousands of videos available to watch as I procrastinated on school projects and looked for things to entertain myself with. However, since that day, something had always frustrated me as a hard of hearing person. There were no captions available for most videos. The only time I saw words on the screen was when the audio consisted of a song playing in the background and the visuals consisted of the lyrics to the song. Don't get me wrong. That can be cool sometimes, but I've gotten frustrated with user-made videos in which people speak at a fast pace or mumble or have a funny accent. Unlike my friends who were born deaf or lost their hearing at a young age I'm not very good at lip reading and my mom always worries that I'm doing even more damage to my ears when I wear headphones with the volume turned up. Naturally, when I heard that YouTube was going to make it easy for users to add captions to their videos I got pretty excited. I'd been waiting for something like this to come along.

Then I realized- months after this announcement had been made- that hardly anyone was using this option. The little [cc] button was there for most videos, but 95% of the time rolling over it just gave me a message that read "captions are not available." Recently, I decided to investigate. I made a YouTube account and a short, 20 second video on my digital camera. Then I posted the video and researched how to add captions. I figured when YouTube said it was "easy" to add captions that it was a simple cut and paste sort of thing, the kind of mindless activity that allows any moron to post a blog. Apparently, I was wrong.

The first thing that was a bit annoying was that I had to "research" how to add the captions. It was not clearly explained on a main page on YouTube, though there were a few videos explaining the process, and it was easily found among “help” files on YouTube. With the help of my comp sci major boyfriend, I finally figured it out. You have to create a special "SRT" file that can be created in notepad. It involves numbering the captions in order and timing them within the video. It looks something like this:

1
00:00:01,000 --> 00:00:04,000
(hr:min:sec to hr:min:sec)
Hello, everybody
Welcome to my video

Now, this was fairly easy to do for my entire 20 second clip. However, I can see how it might get tedious for a 5, 10 or 20 minute video. An entire movie would be extremely time consuming. Consider writing the file, uploading it to the video, playing the video, fixing the timing or wording accordingly in the SRT file, refreshing the page and going through that process over and over.

Google has come up with technology including voice recognition and automatic timing. However, the use of this new technology is limited. It's only available to some government channels and Google partners. Feel free to watch this interesting video about the need for captioning and the new technology that's being developed.

If you'd like help adding captions to your own YouTube video you can go to the YouTube help page .

I appreciate captions on videos that I watch even more now that I know how much work it actually is for most people to add them. However, being the lazy Web 2.0 user that I am, I can understand why most people don't bother. We're not all the type of pros who make fancy html web pages every day. All I can say is that I look forward to the day when Google perfects its captioning technology for mass use and all web content will be fully accessible to the deaf and hard of hearing.

Hearing Aid

Apparently I was wrong about how old my hearing aid is. According to my records at the audiologist, I got my current hearing aid at the beginning of 2004, the second half of my junior year, not the beginning of high school. So I was a couple years off. It's 6 years old, not 8 or 9. Still, it's falling apart, and I read somewhere that the life of a hearing aid is typically 5-7 years, which would make sense.

Going to see various audiologists and researching the features of various hearing aids online has been fun. Technology is so cool. Now nearly every hearing aid is blue tooth compatible if you buy a separate little device. I hear the sound quality should be much improved as well.

I "sold" my parents on the Phonak Versata after various audiologists told me that it was the way to go for my specific hearing loss. My current hearing aid is a Phonak Perseo. They don't even make the Perseo anymore, apparently. Amazing how fast technology moves along these days. I'm going to HearX this week to discuss my options with Kaiser discounts and such. I went through the whole rigmarole with voc rehab and they said based on my family's income I would be responsible for the whole amount, so I'm not going to bother to go through their vendor anymore.

At any rate, it'll be really cool once I figure out where I'm going to purchase it and how much it'll cost. I'm trying to decide if I want to get a funky color or something or go with a plain gray like I have now. The Versata comes equipped with "whistle block" (feedback reduction) and "wind block" (for outdoors). The best thing is that with blue tooth capability I can get sound from the tv, phone, my laptop, etc. to go directly to my hearing aid, so my mom won't have to worry about me taking my hearing aid out and blasting the sound through headphones, possibly doing even more damage to my hearing. I'm so excited! I can't wait to actually purchase it. Oddly, it feels weird to always be using singular to talk about my hearing aid,
since usually one buys them in pairs. Thank goodness I can only use one, because typically hearing aids are a couple thousand dollars each.

New Year!

I am terribly sorry to have let this blog go during the holiday season. There's been a lot on my mind what with Thanksgiving, Christmas, New Year's, looking for a job and sorting through my resources. Now that I've apologized for the absence of new posts over the past month and a half, let the new blog commence.
What do I plan to do this year? In 2010 I hope to continue to get more involved with the young adult movement in the hearing loss community and attend the convention in Milwaukee, to maintain this blog more consistently, and to use my resources wisely towards landing a great job.
Although, I’m having some issues sorting out the resources I have available to me. I have connections with the Department of Rehabilitation, but the state of California is flat broke right now. I went through the rigmarole to try to get them to pay for a new hearing aid for me, but I’m still claimed as a dependent on my parents’ tax return so I’m not considered impoverished enough to get help. Although I have to rely on my parents right now monetarily, I’d really like to start becoming an independent adult, which is what most of these services are supposed to help me do.

I am realizing more and more that I need to practice my ASL. I am usually sent to "deaf services" departments and the people who help me are sometime interpreters but sometimes they're deaf themselves, and I feel kind of bad when I start talking more to an interpreter than the person I came to see.

I feel like some of these services were meant to improve on the independence of people who are poor and people who have mental or mobility issues. I am simply hard of hearing. I am a highly intelligent young lady, a college graduate, and a self-advocate as much as possible. I merely lack money and some of my hearing. Do I really need these services, or do I just need some cash and a confidence boost?

I’m supposedly getting help obtaining interview clothes. There have been some issues with this, however. I have been authorized to receive a couple of outfits, but setting up an appointment has proven difficult. The organization has called me and left a message telling me to call a certain number and set up an appointment. I called said number and was informed by a recording that I was to leave a message with my phone number in order for someone to call me back and schedule an appointment. I’m hard of hearing. I don’t always hear my phone. Even if it’s right by me I may not figure out exactly where it is until it’s too late. You can imagine how this goes on. Not being a fan of phone tag, I informed my job developer at Goodwill about the situation and she has agreed to help me get this sorted out. Still, the issue has not been resolved… yet.

Anyway, it sure is nice to have a couple other people at various agencies helping me look for appropriate jobs and work on my resume. It’s also nice to have a back-up advocate, just in case. I suppose that’s it for now. I’m still recovering from New Year’s Eve/Day. I camped out for the Rose Parade with a group of friends. Now I can say, “Never again.” I don’t actually recall having too many hearing issues. In fact, if I could hear even less maybe I would have been able to sleep a bit more. Of course there was the ever-present “group” issue, but that wasn’t too bad. All in all it was exhausting and- in my opinion- not worth the effort and lack of comfort and sleep.

Happy new year, everyone! May 2010 be a great year for the advocacy efforts of young adults with hearing loss in California and across the nation!

Updates and Action Alerts

I guess I really have been neglecting this blog. I'm spending hours on Craigslist trying to find jobs to apply for that I might actually have a shot at. I started on my Nanowrimo project, but it wasn't really going anywhere so I've been focusing on the job hunt, going through the motions with DOR so they'll buy me a new hearing aid and looking for other resources for help finding a job, specifically help for people with a hearing loss.

I can't believe I never wrote about the Walk for Hearing! It was awesome. I met my goal of raising $500! We had a lot of young people show up and a I made a few new friends. The walk itself around the marina was pretty nice, but we didn't have the kind of visibility we would have liked. I mean, sure, it's great if we raised a lot of money for hard of hearing advocacy and support, but the walk was also supposed to be about visibility, especially for us young people. There were a bunch of sorority girls that showed up and I hope that we made an impact on some of them. We sat in a big circle and shared our hearing loss stories. Then we went to BJ's which was fun. It was an exhausting time, and now I've got to figure out something new to volunteer for! I did make some connections at the walk. I talked to someone from GLAD and they told me about the EDD program. It sounds a lot like DOR but better.I would hope they can help me with services faster than DOR, because I'm getting tired of sitting at home with my eyes glazed over Craigslist.

Another update! My friend Rhi, who got the Hear YA Now team together for the walk, has informed me of an important accessibility issue. Apparently the Disney/Pixar movie "Up" has been released to rental stores without captions or English subtitles. She told me that the DVDs bought at the store do have subtitles, though they are not very easy to get to. However, in a "marketing decision" subtitles were left out of rental copies of the DVD under the premise that they are "special features." I happened to see "Up" in theaters with open captions, though there wasn't a lot of options as far as showtimes go. That's always the case with captioned showings in theaters, as if me and my friends have no lives and can just go to the movies any time. Anyway, back to the issue at hand. It's not fair that deaf and hard of hearing people should have to buy the $20 version of the DVD when everyone else can rent it for a couple of bucks. We need to let Disney know that this isn't fair and we're not ok with it. I've been told the number to call and voice your opinion is 1-800-723-4763. Call the number in an outrage and let them know we won't stand for this. Even if you don't make the effort to call, boycott "Up" and don't buy or rent it until it is equally accessible to both the hearing and the deaf/hard of hearing communities.

NaBloPoMo???

Oh my goodness! I just found out about "NaBloPoMo" last night! So not only is November "national novel writing month" but also "national blog posting month" as well. I wonder if I can do both.... Is that an achievable feat?

Ok, I got it. My plan is to write a story from the perspective of a young hard of hearing girl writing in her daily journal. It'll be like Princess Diaries, except it will be a hearing loss journey rather than a royal journey. I'll make a new entry into the "journal" every day, and then I'll post about it here. Ah! I'm so going to do this! I haven't started on the NaNoWriMo project yet but I'm going to..... now!

Negligence and Story Ideas?

I am sorry to say that I've been neglecting this blog. I havent written in nearly 2 weeks. I've been busy trying to figure out how to get a job, how to raise more money for the Walk for Hearing, and what I should write for National Novel Writing Month. (Be prepared for more negligence as I embark on this literary endeavor)If you don't know what National Novel Writing Month is all about, here's the deal. The idea is that a ton of people across the nation and the world pledge to attempt 50,000 words over the month of November. I suppose the most common form is a novel, but I'm sure it can be anything you want; a screenplay or what have you. Of course, when I tell my parents about it or ask them for suggestions they say something like "I know, why don't you get a job!?" Yes, Mom and Dad, thank you for that brilliant idea. However, times are tough right now, especially for what Businessweek calls the "Lost Generation." That is, people between the ages of 16 and 25- like myself- who are being hit the hardest in terms of unemployment and detrimental long-term effects on careers. In other words, why not attempt writing a novel? It will give me something to do other than sit in my pajamas until noon with my eyes glazed over craigslist looking for anything I could possibly hope to qualify for in the writing/editing field. Besides, all the "real" writing jobs require samples of your work, and what have I got to show for 4 lousy years of college? A stack of hurried, BSed essays a mile high.

Anyway, back to the "hard of hearing young adults" issues this blog is supposed to be about. I've been trying to decide what to write about. I definitely want to try something that ties into the "young adults with hearing loss" theme. However, I'm not quite sure how I want to go about it. Do I want to write something fictional yet semi-autobiographical? I'd have to be sure I didn't make the fictional characters too much like the real people in my life. Should I try for a memoir type style? Should I write in the form of a journal, like Meg Cabot does in The Princess Diaries books? I'm not entirely sure. The good thing is that the main point of "NaNoWriMo," as it's called, is just to write! Get all your ideas out there. No editing. December and beyond can be dedicated to the cause of the perfectionist. November is for getting 50,000 words written, no matter what they end up like. Still, perhaps some of you other young adults with hearing loss might have some ideas of what issues I should address or what the best format for doing so would be. I'd like to hear any ideas you might have. Thanks

Exhausting Weekend

Last Friday, the 9th, we went to Deaf Night at the Block of Orange. We met some cool people from Cal State Northridge (known for its deaf studies program) there. My friend Rhi, the activist, got really excited and insisted that we go up to CSUN the next weekend (this past weekend). We ended up going at presumably the worst possible time traffic-wise (Friday evening) but it wasn’t too bad. I was, however, a bit frustrated with the trip as a whole. It was definitely fun in the end, but I spent money I don’t really have on a dinner I didn’t really like, and I had a hard time communicating with anyone! There was a large group of us; some deaf, some hard of hearing, and some hearing. Because there was so many of us I never knew what was going on in the conversation. I had to keep asking what was going on, but my boyfriend didn’t even know, because neither of us is very skilled at signing yet and a lot of our friends have slight “deaf” accents so I have a hard time with that. Overall, it was a long drive and a long night. I got home around 2 in the morning.

Saturday I was exhausted, of course, but there was a fundraiser for OCF-OCF that I’d been looking forward to going to. My boyfriend and I were wishy-washy about whether or not we had enough energy to go, but in the end we went. It was a casino night at the local Elks Lodge. My parents paid for us to go. We got free drinks, played black jack and such, and my boyfriend even won a poker set. It was fun. It was also very, very loud. There was loud music playing and the bass was louder than any conversation I could have possibly had unless I was screaming. I had to have my boyfriend repeat nearly everything directly to my hearing aid.

Both of these instances were ones in which I definitely wish I could lip-read/ sign better! Sometimes I feel like I’ll be in big trouble if I ever actually go deaf. I didn’t learn these skills naturally at a young age like a lot of my friends. I’ve decided to write this weekend off as a loss. It’s been a loss of actual weekend/relaxation time at least. I can’t wait for the Walk to come. At this point it’s partly because I’m excited to meet new people with whom I can connect and partly because I’m exhausted from work that doesn’t seem to be getting me anywhere. It will all be worth it when I make a bunch of new hard of hearing friends at the Walk, right?

SoCal Walk 4 Hearing

I’ve been trying to become more active in the Young Adult Movement among the hearing loss community for the past couple of years. For the longest time after I got my first pair of hearing aids I had felt major self-pity about my hearing loss. “Only old people wear hearing aids,” I thought. “The hard of hearing community is made up of grandparents and people who were born deaf,” I thought. That is, until the people in my lip-reading class (all at least forty years older than me) encouraged me to seek out other young hard of hearing adults. Since I set off on this journey a couple of years ago I’ve made some progress, though I still don’t quite see myself as a major leader in the young adult movement. I’ve made friends, and I’ve realized that each of us has our own story. Everyone’s hearing loss journey is different. I don’t feel so alone anymore. Some of the people I’ve met are older people from the HLAA. Some are young and hard of hearing like me. I’ve joined a social networking site specifically for hard of hearing young adults called Hearing Loss Nation (http://hearinglossnation.ning.com). I’m getting there, but something big is coming up that I think may have a major impact.

The HLAA’s Southern California Walk for Hearing will be held next month on November 8th in Long Beach. Certainly this is a great opportunity for the HLAA to spread its message of access, education and advocacy for the general hearing loss community. This year, however, it’s our turn as young adults to bring attention to our presence, issues, and needs.

Why is our presence at the walk important?

1. Visibility- Raise awareness about the impact and existence of hearing loss.
We are here (hear) now!

2. Support- Provide a space to share our common experiences in a world dominated by the black and white division of deaf and mainstream hearing.

3. Communication- Talk about issues with technology and the 21st Century Communications and Video Accessibility Act of 2009

4. Networking- Meet other young hard of hearing adults.

5. Advocacy- Speak up for yourself, your hearing loss community and hard of hearing people across the nation.

The Walk is a starting point for future discussion and collaboration on long term issues that affect today's young adults with hearing loss who are faced with rapidly evolving technologies that can support our needs. Taking advantage of social media networks and passionate interpersonal encounters with other young adults creates opportunities for us to merge our ideas to facilitate real, sustainable change in accessibility and communication technologies in education and the workplace. Please join us at the walk. The Hearing Loss Association of America (HLAA) is currently working on initiatives that will involve more young adults at the national level. Your donations will be funding these efforts in the state of California and at the national level.

I'm part of Hear YA Now, the young adult team. If you are interested in joining my team, or donating, go to: http://www.walk4hearing.org/ Under the list of “2009 Walks” find Long Beach, CA at the bottom and click on it. When the next screen comes up click on the foot print marked “join a team” and search for “Hear YA Now.” When you get to the team page click the link that says “join team” one more time and fill out the information on the pages that follow. You do NOT have to make a personal donation, but you should set a personal fundraising goal. If you would like to join our team, please contact either Team Captain Rhianon Gutierrez (rhianon.elan@gmail.com) or myself (mccal106@mail.chapman.edu) so we can send you more information and a basic fundraising letter to send to friends and family.

Identity

Recent charity events have got me thinking about identity and how I identify myself. I am a cancer survivor, but I’m also a hard-of-hearing young adult. Both of these affect me on a day to day basis, but the former has for so many years- and in such a subtle way-that I hardly notice anymore. It’s certainly part of who I am, but I haven’t had to deal with the day-to-day medical hassles for so long that it’s become trivial. Most people who knew me when I was a kid recognize me primarily as a childhood cancer survivor. Most who have met me since probably know me better as a hard-of-hearing young adult. I have been a cancer survivor for about sixteen of my twenty-two years. Of those, about fourteen have been post-treatment, so unless someone is a good friend of my family or has really gotten to know me, they might know me as a hard of hearing person but not as a cancer survivor. My identity as a cancer survivor was formed when I was far too young to understand the implications. However, my identity as a hard of hearing person is still continuing to develop.

As I grow older and more knowledgeable about the world around me, I’m also more keenly aware of how my hearing loss affects my daily interaction with others. Cancer comes in so many different shapes and forms that once someone is done with treatment it may no longer be obvious that he or she has had cancer. You may or may not have a hint about a person’s hearing status by having a few conversations with them, noticing that they wear a hearing aid, etc. Both conditions can be somewhat less visible than others. As I mature I think I’ve tried to make my status as a cancer survivor less visible and my status as a hard of hearing young adult more visible. It used to be quite the opposite. I was so open about my cancer diagnosis that I gave it out like any random fact. “I was diagnosed with a brain tumor when I was five” was as casual a thing to say as “I’d like to learn to swing dance.” I tried to hide the fact that I wore a hearing aid, but how long can you carry on a conversation with someone and hide the fact that you haven’t heard half of what they said? I was caught in a double “in between trap.” I didn’t fit in with the Deaf or hearing worlds. Even among the hearing loss community I was in between the elderly who had lost their hearing because they were old and the young people who had been born deaf. However, the more hard-of-hearing young adults I come across, the more I realize that we are a unique group, and among that group our situations are diverse. Thus, I’ve decided to stop trying to define myself as belonging to a certain group and work on the issues I find important to me as an individual.

Phone Messages

This will be a short one. I thought it would be appropriate to follow up the technology post with this. I'd established that phone calls are for the most part a thing of the past, or they should be in my opinion, for people who are hard of hearing. Anyhow, I've noticed recently that phone messages really annoy me. I will admit that I am guilty of long, rambling messages, so I guess I'm a bit of a hypocrite. The majority of people I know are not hard of hearing, but I know plenty of people who have the same sort of issues with phone messages as I do. Here are my top 10 phone message pet peeves in no particular order:

• messages left from a crowded public place with lots of background noise and chatter
• whether there's other background noise or not, wind blowing into the mouth piece
• messages left from a place that is supposed to be quiet so the person is almost whispering
• a bad cell reception that goes in and out as the person leaves the message
• people with heavy foreign accents giving important info such as medical results
• call-back numbers that are not left in a clear manner
• particularly ones left at the end of the message so you have to play the whole thing over
• most especially when the rest of the message is slow but the number is given fast
• when the whole message is given at lightning spead and thus incomprehensible
• messages that are so difficult to interpret that I have to resort to having someone else listen to them and interpret them for me

The last one is something I was discussing with a friend of mine who has cochlear implants. It really is frustrating as a hard of hearing young person to have to have another person interpret a phone message for you. Not only is it a bit depressing that you don't get the pleasure of hearing and "getting" the message yourself, but there are just some conversations you don't really want your mother hearing. Some messages are confidential. My friend actually said her biggest pet peeve was that people still leave her voicemails even though her voicemail message says "Please, don't leave me voicemails" for these very reasons.

Technology

Alright, alright. I've let another week slip by without posting. I need to try to write more often. Topics, topics, topics.... Hmmm. Well, something I tend to come back to thinking about a lot is my social life. How is it affected by my hearing loss and how is it affected by my introversion? One doesn't have to be hard of hearing to know that quality is greater than quantity when it comes to friends. I find myself hanging out with just my boyfriend a lot in recent months as opposed to going out with groups of friends. People say, "Hey, we need to hang out some time!" Then they get busy and never call… or respond to messages left on their phones. Things never get arranged. It may literally be months or years before we ever end up seeing each other. Sometimes I feel like I lack social motivation. I'm not the one to call, but is it because I don't like talking on the phone or because I'm afraid people won't want to (or won't have time to) hang out one on one? You'd think with all the ways we have now to contact one another we'd be able to keep in touch, make arrangements and work out our schedules. I admit to being a little addicted to things like facebook, e-mail and texting. Phone calls are a thing of the past, right? I mean, who actually calls people on their phones anymore when there are so many other ways to communicate? Older hard of hearing friends have suggested TTY before. I really don't like the thought of it. It seems like ancient technology. It's so slow. Besides, I wouldn't feel right using it, not for a private conversation. For those unfamiliar with TTY; you have a special phone that types out what the other person is saying onto a screen. There's actually an operator in the middle typing that out for you, so not only do you have to stop and wait for them in the middle, but you can't have a really private conversation. Today we have things like aim, skype, text messaging, etc. I really don't see why TTY is necessary at all anymore, unless you're 80 years old and a total technophobe.

I was just chatting with a friend about the phone interview I'd had. He seemed almost surprised that I was able to do an interview via telephone. When I asked why he was so surprised he said that he "never had any reason to think I couldn't use the phone, but he realized that he had never talked to me over the phone, so he wasn't sure." We went on to discuss how I feel about talking on the phone and about how most people of our generation feel about talking on the phone. I told him that I'm actually fine talking on the phone as long as it has decent volume control. He wasn't surprised when I said that every guy I've been on a date with up to my current boyfriend, every one of them "hearing," seemed less willing to talk on the phone than I am. Usually the only phone conversations we have go something like this...

Me: "Hey, I just finished dinner. I'm getting ready to leave the house. I'll be over in about half an hour."

Him: "Ok, see you in a bit."

... or vice versa. This conversation is so minimal it might as well have been conducted via text. Calling sometimes gives one a little more of a guarantee that you’ll actually get a hold of the person while the message is still relevant. Of course, that depends on whether or not they constantly check their phone for messages. Some people text back so fast that you wouldn’t think they’d had time to receive the one you sent them. We talked about how a lot of people our age prefer new technology to old, not just the hard of hearing. So I'm left with these questions: Do guys in general dislike talking on the phone? Is it just a sign that the times are changing? OR Are they all aware of how verbose I am and want to avoid a conversation like the plague?

Camp!

Sorry I haven't posted in about a week. I haven't had much to write about and I'd been preparing for camp anyway.

This weekend I went to camp with the Orange County Foundation for Oncology Children and Families (OCF-OCF). If the name isn't enough of a hint, it's a group for children diagnosed with cancer and their families. What made this camp special was that this was my first time going as a staff member rather than a camper. I don't have the best of memories, but I don't think this experience was really all that different from when I was a camper, except maybe that four of us got a whole cabin to ourselves. We had been going to June and September family camp ince I was diagnosed with a brain tumor in 1993 up until my sister and I hit high school and schedules started conflicting with band competitions and such. Before I knew it I was over 18 and no longer allowed to go as a camper, but I was too busy with school to go as a counselor. Now that I'm done with school I got my chance to go back.

I actually wasn't a cabin counselor. I helped out with the little ones too young to be in a cabin, the so-called "tiny tots." We'd have sessions of a couple hours where the parents could leave the kids with us and go do other activities. It was fun and the kids were really cute, but it got really exhausting. Not only was I pulling the girls around in the wagon and swinging them around at the Friday night dance, but I was also really straining to figure out what they were trying to tell me. You know how little three-year-old kids talk. Some of it I could just nod my head or respond "Oh yeah? Really? Wow!" to. Sometimes, however, they'd be asking me if I'd take them to go see the horsies, or asking if I wanted their juice box and it got a little frustrating as I tried to figure out what it was they wanted. My sister seems to think that I wouldn't survive as an actual cabin counselor: "What if a kid needs you for something important in the middle of the night?" She had the youngest girls cabin, so I guess she'd know, but we also have a kind of hostile relationship and she probably thinks I'm incompetent. If I had been in a cabin I would have had a couple of co-counselors to back me up and I could explain my hearing situation to the kids right from the start. I think I could handle it. The only way to find out would be to give it a try, right?

Anyway, I shared a cabin with the two ladies who have done "tiny tots" for the past couple of years and another patient who grew too old to be a camper anymore who was helping us out with the kids. We got it all to ourselves because the two youngest girls' age-brackets were combined into one cabin this camp. Each cabin sings a ditty before each meal, which is usually a version of a popular song with things about that particular cabin's day at camp mixed in. We never had to do any ditties at meals because our kids were too young, but we dressed them up for dinner, which was fun. I really had a hard time understanding the ditties this time around. I'd always had a little difficulty, but I couldn't even tell what most of them were about this time. Campfire was alright. I knew all but one of the songs they sang, and most of the skits involved a microphone, although I've always had a little trouble with those microphones. I was just hoping and praying that they wouldn't call me up during "chuggy chuggy" or the "elephant walk," which they didn't. Come to think of it, I don't think I'm very popular around there.

It's strange, but I feel like I'm only known by some people by association with my parents or family, even though I was the actual patient and the reason we started going to OCF camp. That could be due to my introversion or my hearing loss, I guess. I think my social status most everywhere is a combination of the two. I feel like if I hear and respond incorrectly to something once or twice, no matter where I am, I must get some sort of social stigma attached to me. I suppose that's why I never really bonded with my cabin-mates when I was younger, or perhaps it was a maturity level thing. My cabinmates would be outside flirting with the boys' cabin and playing whatever ridiculous pop songs were popular at the time, while I was inside having a quiet, mature conversation with one of my counselors. I guess maybe that was kind of weird, because the point of the camp is to forget about all your worries and just be a regular kid. Oh well. That was then. This is now, and I'm going to do the best I can with the gift of the present.

FYI: The photo in the corner is a couple of our kids. We dressed up as "101 Dalmations" for the "movie magic" dinner on Friday night.

ASL and Grammar

Yesterday my boyfriend and I were trying to think of something to do, so we went to the library and looked for DVDs to check out. We ended up getting Sense & Sensibility (with Alan Rickman, yay!) and a sign language DVD which promised to teach you 300 words in an hour! We thought it might be fun to see if it was at all helpful or just odd and dated. At any rate, it's been about a year since I last took an ASL class and I could stand to brush up on my signing. I really don't have much use for it, because most people don't know it. Like I said in my last post, most of my hard of hearing friends lipread, and my hearing has never been so bad that I've needed to learn sign. I'm certain the show that we watched originally came out on VHS, because there were no DVD subtitle options, but you could turn on the tv's closed captioning. They also talked specifically about the law passed in 1993 that stated all televisions should have closed captioning options without having to pay extra for the special device. I was certainly reminded of why ASL is so difficult. Even something as simple as finger spelling is done at a rapid speed by people who know it well, and many signs are similar to one another and are easily confused. For example; "month" could easily be confused with "condom" based on whether you slide your right index finger down the front or the back of your left index finger. This was an actual example used in the movie. I also seem to recall a hilarious incident in one of my ASL classes in which a classmate made this very mistake. Watching the video was a bit of a refresher for me, but 300 words in one hour is a whole lot. One would probably have to watch the video over and over and practice continually to actually learn all 300 words. My boyfriend has decided to at least learn finger spelling. Since we're both novice signers, we wouldn't be spelling super fast, and it would be a way to simplify communication. For example; if someone had said the word "bat" but I had heard the word "mat" ('b', 'm' and 'p' are very similar, even if you're lipreading) he could repeat the word and make the sign for "b."



Signing can definitely help a hard of hearing person, but ASL is primarily associated with the deaf/Deaf community. It certainly isn't essential, and for someone who has not been deaf their entire life, ASL is just as difficult to learn as any other foreign language. I typically compare my knowledge of ASL to my knowledge of French. After taking 3 years of French in high school and one semester in college I only "utulise un petite phrase ici et la, mais mon grammair est terrible." Similarly, I only "use little phrases here and there" in ASL, but the grammar is actually quite different from plain English. This is how I was taught in my classes, by a deaf teacher, no less. "The blue bird flew south" (if I remember correctly) would be something like "south bird blue it fly(+ past tense) it." Although ASL is meant to represent spoken American English, the grammar structure is very different. It's understandable that some deaf or severely hard of hearing people have some grammatical issues when they write. This does not mean that they are unintelligent. I have read some brilliant ideas on forums for the hard of hearing. The meaning of the author is clear enough, but because he or she may not have the same sense of spoken English as a "hearing" person would, their grammar is sometimes way off from what you and I are used to. I see this as an opportunity for me to help those that have a more severe hearing loss than myself. Some day I might establish a career in editing in which I could help these people express themselves in a manner that the mainstream may understand and admire. I hope that some day I may obtain this goal to help others in a similar situation to be their own advocates. ASL is a helpful tool, but unfortunately the "hearing world" tends to hold a "black and white" view. There are hearing people and there are deaf people, and often deaf and hard of hearing people are seen as inferior to their hearing counterparts because they do not communicate in exactly the same way. Likewise, I seem to get a sense of aloofness from the deaf community, and I have heard the same from others who identify specifically with the "hard of hearing" community. Can't we all just learn to communicate with one another in whatever way we can and not ridicule those who do it a bit differently?

Lipreading

Each of the past two nights I have had a meal with a friend at a crowded restaurant and thought, "Man, I wish I knew how to lip-read better!" This is one of the major ways in which I differ from a lot of young hard of hearing people. The reason I see for this is that I had developed language skills long before anyone even suspected my hearing loss. Many young hard of hearing people were born deaf or with significant hearing loss, so they have depended on lipreading pretty much their entire lives. I, on the other hand, although I have been losing my hearing from an early age, had fully developed my language skills before my hearing loss ever became significant. I was a fairly smart kid, so "filling in the blanks" when teachers were saying something wasn't too hard for me, even though I couldn't lip-read. Perhaps I did, and do, lip-read at least a little, subconsciously.

However, my tendency is to place my good ear close to someone when they're speaking, rather than face them. This becomes a little obnoxious for all involved when I start leaning over and going "What? Huh? What?" as I did with my friend last night. Most of my hard of hearing friends insist that you face them, so that they can read your lips. I usually just want you on my "good side." I've had my hearing aid ever since my hearing got really bad, and I do pretty well with it... except in these crowded settings. I eventually give up leaning over and asking the other person to repeat herself, and I miss out on half of what's been said. Last night when we were saying goodbye in the parking lot I finally figured out that my friend was moving to LA for a job she was going to start and had an internship in Aliso Viejo which was about to end. All I had really understood prior was that she was working in Aliso Viejo now and planned to move to the LA area soon.

These are the times I really wish I could lip-read better! "You should take a class," one might suggest. The thing is... I've already taken a class, and it really didn't help. It was a "distance learning" class through Saddleback College. It was held at the senior center down the hill from my house. I was the youngest student by about forty years. Each class it seemed a different classmate would start talking and bonding with me, like I was their "honorary granddaughter" for the week. That experience is actually one of the first major sources of encouragement I had to start seeking out other young, hard of hearing people to connect with. As far as the class itself goes, activities were exagerated and slow and when I tried to practice in everyday conversation the difference was drastic. Practicing with myself in a mirror like the teacher suggested was difficult because of my slight facial paralysis. All of this was so frustrating that I guess I kind of just stopped trying. Maybe I quit too easily. Perhaps I should give it another go; take another class, read a book or try practicing in everyday conversation. My hard of hearing friends who do lip-read always seem to have more of a clue than I do, and they probably catch some side conversations even "hearing" people miss. I want to be in-the-know! I think it's time I gave lipreading another shot.