Hearing Loss of America, Kansas City Chapter Blog

Here’s the post I typed up for HLAA KC Chapter’s blog about the convention. Be sure to check out other people’s thoughts on the convention here.

Kelly’s Take on the HLAA Convention
I was able to attend this year’s HLAA convention in Milwaukee thanks to Starkey’s Scholarship for Young Adults. Dennis and Sarah did a great job blogging about all the awesome lectures and events that went on during the convention!

For those of you who are curious about my background. I was born with bilateral profound hearing loss which wasn’t discovered until I was 20 months. Sign language is my preferred mode of communication even though I do have some speech. I went through 5 pairs of hearing aids and rebelled against hearing aids as a teenager before I decided to receive a cochlear implant last year at the age of 25.

I have to admit I didn’t think I would be as welcomed as I was. I’m used to being looked down on for using sign language. I’m also used to being looked down on by culturally deaf people for wanting to hear. I honestly thought there would be several situations where I would feel left out because I preferred sign language and didn’t have progressive or sudden hearing loss.

Boy, was I wrong.

I met an amazing group of people who were so eager to meet other people with hearing loss that they didn’t care how I communicated or how I became deaf. This was one of the most diverse group I’ve ever met. Everyone had different types of hearing loss, lost their hearing at different ages, and utilized different technology to hear. What struck me the most about this convention was how willing everyone wanted to communicate.

COMMUNICATION. Anyone with any type and degree of hearing loss know the importance of communicating. Not once did I hear or see anyone say, “never mind” or “oh, it’s not important.” Everyone wanted everyone to understand what was going on and what was being said. People were doing all they could to make sure no one was left out. It was a beautiful thing to witness and be a part of. I witnessed an amazing amount of ACCEPTANCE and PATIENCE that I never knew was possible.

Best of all, I didn’t have to explain myself and I didn’t feel lost. I have been to other conventions/conferences in the past where I was the only deaf person and I always feel so lost at those conventions/conferences. At this convention, I could attend any workshop I wanted at anytime I wanted without having to make prior arrangements which gave me a sense of FREEDOM and FLEXIBILITY that I’ve never had. Networking was easy. Everyone knew the importance of getting the other person’s attention before starting to speak, making eye contact, and speaking clearly but normally.

For once, people understood where I was coming from. I didn’t feel like I was the odd one out for being the only one who couldn’t hear.

I saw people take PRIDE in wearing their HAs/CIs. I saw people wearing decorative items on their HAs/CIs and they didn’t want to hide them. They saw their HAs/CIs as part of who they are and wanted to declare it to the world. That attitude made me feel refreshed, energized, and ready to take on the world.

I’m already looking forward to next year’s convention in D.C.!

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HLAA Convention 2010

I was able to attend the HLAA (Hearing Loss Association of America) convention in Milwaukee thanks to a Starkey Scholarship for Young Adults.

There’s so many things I want to blog about which is why it’s taken me so long to type up this post. I decided to just type up a few items from my notes because there’s no way I can get around to blogging about everything in detail.

THURSDAY, JUNE 17TH
I rode up to the airport with Dennis where we met up with Sarah (who also received a Starkey for Young Adults scholarship). We met up with Victor later in the day at Milwaukee. We arrived early enough to check into the hotel, pick up our convention items, and get settled in before attending the afternoon lectures.

Below are some random notes I took from various lectures.
–A child’s socioeconomic background may actually have more of an impact on a HOH/deaf child’s language development than a HA/CI itself.
–Sign language early on doesn’t have a negative impact on a child’s oral language as he/she is going through the CI evaluation process. If nothing else, it gives him/her an important foundation for developing language.
–Some congenitally deaf adults decide to receive a CI before they become a parent so they can hear their child.
–A 10 month old baby in the U.S. and a 10 month old baby in the Japan response to the same sounds. After age 1, the Japan baby cannot hear certain sounds that is found in the English language. Babies’ brains are completely undifferentiated until age 12-14 months when some areas of the brain becomes dedicated to recognizing certain sounds.
–It could take 2-4 years for a deaf adult to understand what they’re hearing after being implanted. It’s a VERY demanding process since it requires reshaping of brain connections.
–You can tell if a person could hear in their first 4 years of life based upon their speech patterns.
–The implanted ear might actually be a good candidate for stem cell regeneration due to the auditory nerve being active. CIs do not damage nerves, just hair cells which could mean that stem cell restoration might be okay in the implanted ear. (There’s a lot of conflicting theories about this).
–The CI incision used to be 6 inches long but now it’s 1.5 inches long.
FRIDAY, JUNE 18TH
–A hearing aid company is exploring including zen chime music/tones in their HAs to reduce daily life stress.
–Should we disclose our hearing loss during job interviews?
I didn’t take a lot of notes this day even though there was a lot of helpful information. This is when I started getting to know other young adults a bit better. A bunch of us went out for dinner and then met up later on at a bar near the RiverWalk. I decided I wanted to see a bit more of Milwaukee since Dennis and I couldn’t get tickets to the Harley Davidson museum event. We took a walk to Lake Michigan where we discovered a firework show going on. It was awesome being 50 feet away from fireworks being set off while it was lightning nearby. I could actually hear the sizzle when they lit each firework. Let me tellya, it scared me being able to hear the fireworks….especially that close! I love being able to hear, feel, and see something all at once!
SATURDAY, JUNE 19TH
I ran a 5K in the morning at the zoo. I was a bit annoyed because I couldn’t follow anything that was going on. There were 2,000 people registered for the run and no way I could get near enough to lipread the instructions for the run. The run and walk were supposed to start at the same time but with different routes. I ended up following a large group of people (because I didn’t see anyone go anywhere else) and found myself with the walking group. I couldn’t turn around and go back since there were too many people heading in the same direction. I was so frustrated because I had missed out on such an important information when I thought I had reviewed the map and schedule thoroughly the night before to avoid something like this. I was ready to bail and head back to the hotel when I happened to go around a curve and saw the very last group of runners passing us by. I stepped out and waited until the volunteers weren’t watching and sneaked into the last runner’s group. I actually ended up running about 3 of the 3.1 miles and finished it in about 27 minutes according to my pedometer. My official time ended up being around 35 minutes because of the confusion that had occurred.
–The CI process is a relearning how to hear process. My question with this comment has always been…what if a person never heard before?
–There was an interesting lecture that touched on auditory confusion which is something I believe happens to me and is why I can’t hear certain things even though my audiogram suggests I should be able to (e.g. sirens). An example that was given was that there are neurons dedicated to certain types of inputs (e.g. low frequency input neurons, mid frequency input neurons, and high frequency input neurons). When a person loses hearing in the high frequency range those high frequency input neurons start responding to mid frequency inputs. When that person gets a hearing aid, the mid frequency neurons will gradually start to respond to the high frequency inputs again. It takes time for the neuron to reorganization. The process of reorganization is called acclimating.
–I loved how the CART captioners included everything they were hearing even if it was just a dog barking.
–There were a lot of people who decorated their CIs/HAs with stickers and other decorative items.
–Auditory/aural training is like brain training. Your ear is the window to the brain. You do NOT hear with your ear, you hear with your brain.
The young adults were invited to a comedy club where CART was provided. It was such an awesome evening filled with laughter and smiles.
SUNDAY, JUNE 20TH
We all were exhausted by Sunday but were able to make it to the awards breakfast before heading to the airport.

Hope to see you all in D.C. next year!

Sound Localization

I have always been terrible at locating sounds. I can remember doing some aural rehab back in my bilateral HA days where I had to try and locate sounds (e.g. left side vs right side). I failed miserably to the point where the speech therapist/audiologist gave up.

I usually locate sounds via a trial/error, visual, and elimination process. I cannot remember a time in my life where I’ve located a sound just by hearing…well…until last week.

I was over at Dennis’ place bright and early Thursday morning to ride to the airport together where we met up with Sarah to head to the HLAA convention (more on that later). I was waiting on Dennis to finish packing. I kept hearing something but could not figure out what it was.
I had a little light bulb moment and realized the volume changed as I walked around trying to figure out what I was hearing. It seemed to get quieter as I walked in a certain direction and when I moved my head in different directions (e.g. CI side away from the source of sound). I was able to figure out that the sound I was hearing was upstairs so I headed in that direction. As I approached Dennis’ bedroom I was able to guess what the sound was before I saw it.
It was Dennis’ bed alarm going off. Apparently he hadn’t put his CI on yet. 😉
Locating sounds is a natural skill for hearing people but a learned skill for deaf people.

My First 5K!

I finally took the plunge and ran my first 5K Saturday. It was a challenge even though it was a flat course. My 2 main goals were to run the 5K without stopping and under 30 minutes. I accomplished both goals and completed the run in 27:55. I placed 16th out of 46 women in my age category and 50th out of 161 runners.

I don’t run to win. I run to reach personal goals.

I am very pleased with myself for completing this race without stopping. There were a few moments where I was VERY tempted to stop for a few seconds but I didn’t. Mind over matter.

3.1 miles may seem like nothing to some people but it’s a pretty big deal for me. I could NEVER seem to do the 1 mile run in elementary, middle, and high school. I could beat all the boys in elementary school if we sprinted but I was always dead last in the mile run. When I first started running last year, I couldn’t even run 0.5 miles without stopping.

Running a 5K is still a challenge for me. I just don’t have the endurance some people are born with. It is something I want to continue with and I hope to continue to set goals for myself.

It was a lot of fun starting the race out with Morgan! Thanks to Dennis and my parents for waiting for me at the finish line. Props to the Dukes for meeting up with us for brunch afterwards.

I’m also playing on a sand volleyball team. We had our first match last week which went well. We won 2 games and lost 1. We practiced yesterday in the rain which was a lot of FUN! 🙂

Do I Want a Christian Missionary to Cure My "Deafness?" (Part 2 of 2)

I haven’t bumped into the Christian Missionary guy since he gave us that note (see previous blog entry). I have had a few people ask how I reacted and what I said to him.

I said nothing. I just acknowledged him and waited for him to leave. Others took the same approach. We, unfortunately, have found ourselves in situations like this more than once.

I was actually impressed that he knew deaf people could read and write. So I do give him props for that.

I do wonder if he was really cured of his allergies and what the full story behind that is.

I can’t help but be curious about those so called cured deaf people. There’s NO cure for hearing loss/deafness no matter how strong your religion beliefs are. I want to meet those people because they’re lying. I want to find out why they lie and give people false hope.

It does give the message that deaf people are not “normal” and that people do feel sorry for us. I’m perfectly fine with being deaf. Sure, there are frustrating moments but that’s life regardless of if you can hear or not. Being deaf is part of who I am and for someone to suggest that being deaf is a “bad” thing makes me wonder how people really truly view deaf people.

Now, I can’t be 100% annoyed with this person. He was doing what he felt was right and he wanted to be helpful. People just don’t always realize that being deaf is not such a horrible thing. People want to be helpful, but they don’t realize that most of the time they’re taking the totally wrong approach. I know he was trying to be helpful according to his own heart and beliefs. I can accept that. I can see the good in that. I’m sure it took some guts on his part to write up that letter and approach 4 strangers.

He wasn’t pushy about it hence there was no reason to really get into a discussion with him. I wanted to relax and so did my friends. None of us wanted to launch into our “let’s educate people” mode. We do need breaks from that mode since we’re almost always in that mode.

Sometimes it is hard to not jump into defensive mode.

If he ever approaches me again, I will likely explain in a friendly way that I’m perfectly happy with being deaf. I will explain that most deaf people are not looking for a cure, instead we want people to accept that it’s okay to be deaf. As much as I hate being approached with things like this, I do try to put a positive spin on it. It’s possible that I might be the only deaf person they come into contact with and they do judge all deaf people based upon one deaf person. Hence, I might mention that it was great he actually wrote down what he wanted to say. Not many people do that or even think to do that.

If for some reason he just can’t accept my explanation then I’ll just take the “respect but ignore” approach with him.

I guess the main thing about this that bothers me is that this attitude is still around. Every time I think society has taken a huge step forward, society takes a few small steps backwards.

Do I Want a Christian Missionary to Cure My "Deafness?" (Part 1 of 2)

The summer season is in full swing! I’m hoping to have time this week to post more.

This note was given to me and a few other friends at the pool yesterday. Things like this happen from time to time. At least he knew we could read unlike some people who actually ask if I can read. 😉

“Hi, my name is Randy. About a year ago I had severe allergies. I could only eat a few foods and I could not go into a pool because of allergies to chlorine. A Christian missionary prayed for me and I was healed. I can eat anything, without any allergy reaction. This Christian missionary has prayed for deaf people and God has completely healed them to enable them to hear.”
“This Christian missionary will be in Kansas City this summer. Would any of you who are not able to hear well or not at all be interested in this missionary praying for you? Let me know, Randy.”