Brian's Ramblings

My thoughts in text, photo, and video form

Sunday, January 30, 2005

Apprehension Leads to Confidence

This week was a week dedicated to hard work. I didn't have any class sessions on Tuesday, so I was able to put in more hours at work. This turned out to be a a positive as I was able to have a discussion with Dr. Skouge (Jim). He informed me that he volunteered me to serve as "host" of a conference sponsored by the University of Hawaii's Center on Disability Studies (CDS). At first, my initial reaction was, "What?! You did what?!" But, I kept an open mind, listened to Jim describe what my duties would be as "host." It took me a little while to fully process everything, but as I had time to reflect, I realized that I have a great opportunity ahead of me. I was particularly appreciative of the timing of this opportunity, or at least the announcement of the opportunity on Jim's part, as my confidence in myself wasn't exactly at its highest. I was a day removed from internalizing the whole situation regarding my augmentative communication device; a situation that I perceived as a lack of confidence in VR's part in MY abilities, for I would venture to guess that if they had complete confidence that I can achieve (whatever that might be), they would do all that they could to support me.

I suppose the whole situation left me questioning myself, questioning my abilities. Here I constantly tell others about the importance of self-advocacy, my BA is focused on Advocacy for the Disabled, but yet I can't successfully advocate for myself?! This definitely causes one to step back and really look at one's self. You also have faith that VR would be one of the main supporters of my goal to achieve self-sufficiency, be it as it relates to employment AND life in general. Asking someone to jump through all of these hoops, watching that person do so, and not holding up your end of the agreement demonstrates a lack of...confidence, perhaps, maybe even a lack of respect?? I called and spoke with my VR counselor, being extremely polite and cordial, and calmly explained the frustration I was feeling regarding this situation. I constantly reiterated the fact that I appreciated all of the efforts that I believed had been put forth to expedite the situation; I also explained that after a while, hearing "1 month" (regarding how much longer it will take) grows old when you hear it over and over. I was dismayed by the fact that the counselor made a comment to the effect of, "You need to be just a little more patient." Furthermore, the counselor seemed to defend the VR system when I brought up the fact I found out that another client had a DynaWrite ordered by VR in less a week; I called to follow up on this only to hear, "That client received replacement parts for an existing device." At this point, MY faith in VR has hit a low, so I will pursue other avenues of advocacy this week. I owe it to myself to do so, even if I dislike causing waves, rocking the boat, etc. I MUST thank all of you who have posted comments of support, I do appreciate them!

So, Jim's announcement came at a great time. I thanked him for believing in me and expressed my excitement about the opportunity to do something that I wouldn't have dreamed of. I think the expected audience at this conference will be 75-100 people.

On Thursday, after a long, but good day, I had a moment of more confusion! My late class ended, and I waited for my ride to come. Guess who the driver was?! It was the driver from a couple weeks ago, the one who dropped the cell phone and reached to pick it up! At this point, I was exhausted from a long day and knew I had another long day ahead of me, so I wasn't about to refuse my ride home. As I rode home, sure enough the cell rang, the driver answered it, carried on brief conversations; I really didn't know what to think, and I still don't. However, I shared this story with my friend, who pointed out the fact that it was disrespectful on the company's part to promise that this particular driver would never pick me up again, only to go back on their word and send the driver again. In order to be a smart consumer, aside from practicing my self-advocacy skills, I will plan to contact the company this week to express my disappointment.

Positives, positives, surely there must have been more positives this week! Ah, Friday would bring a superb opportunity for me to grow as a person and future professional. Jim invited a young man with cerebral palsy to come and visit our world; this young individual just started attending a community college last fall after graduating from high school. He uses an augmentative communication device as well, except its a different device from the one I use. I'm very aware of privacy and confidentiality, so I'll give him the pseudo-identity of "B." I was admittedly a bit apprehensive about this visit, as Jim had placed the responsibility on me to serve as his "host," at least on this day. Jim and I believe that "B" will visit our office on a regular basis and will become another colleague in our world. I knew just a little about "B," through watching him tell jokes as a young child on a video that Jim had shot, but that's about it. I also haven't had interactions with other individuals with CP who use augmentative communication, I'm also not your "hosty"-type of person; many, including myself, would classify me as shy.

So, "B" arrives , Jim and I welcome him; Jim took the initial lead which was nice, then after about 5 minutes, Jim says, "Okay you two, I'll leave you in peace so you can talk." Let the fun begin! I guess the fact I had little time to think was a plus, I just had to dive right in. I started asking "B" questions to get to know him, and I shared info with him about who I was. It didn't take long at all for me to feel at ease, and not be caught up in the whole moment; the conversation began to feel natural. I quickly appreciated the meaning of being patient, as it took "B" some time to prepare what he wanted to verbalize on his augmentative communication device. I always had a sense of what it meant to be patient, and how fortunate I was to have people around me who are, indeed, patient to allow me to communicate at my own pace, but this interaction put everything into a clearer perspective. I wasn't antsy as I waited, I was genuinely eager to hear what "B" had to say. I also observed that "B" was interested in what I had to say, as he stared intently on my screen display as I entered my messages. Eventually, the conversation became so relaxed and easy, that "B" threw in a few jokes. Having one talker deliver a "knock, knock" joke and have the other talker reply with "who's there" was just a classic moment. "B" soon discovered that we have Beauty and the Beast playing in the office, so that distracted him just a wee bit; who could blame him, that's a good movie to enjoy! I suppose after seeing it played day in and day out, I've become accustomed to having it play without being distracted by it; I actually find myself "needing" it to be on in order to feel comfortable.

We would take a tour of the campus, and again, I'm not really one who is of a hosting type, so this was another challenge. I took "B" around, he followed closely behind me in his powered wheelchair, and I pointed out various buildings, like Sinclair Library, Campus Center, Student Services, etc. etc. I think "B" found this enjoyable as he watched and listened as I described/pointed out each building. We'd make our way back to the office and proceeded to have lunch. Pizza would be the choice of food on this day, and we ate together. After I ate, I noticed a water bottle in the bag on the back of "B's" chair, so I took it out, opened the bottle, put the straw in and held the bottle as he drank. No words had to be exchanged, I just knew what I was supposed to do. It felt great to finally do something "right!" "B" would finish drinking, and I put the water bottle back into his bag, disposed of our trash.

I had a meeting to attend and "B" was given the option to tag along with me, but on this day he chose to remain with Jim in the computer lab and compose a story using software called Storybook Weaver Deluxe. It was a great day overall spent with "B," one that began with apprehension and ended in my having a bit more confidence to take on new risks, knowing that most often it WILL turn out just fine.

I attended a disability culture training that was presented by Steve and Lillian Brown, resident scholars of CDS. Although I had seen and heard them talk about disability culture in the past, I really enjoyed attending this. Steve shared a poem called Tell YOUR Story, which I connected with in particular because he spoke about the need to take risks in order to pave your path to glory. I listened to this and thought, "wow, I shouldn't be hesitant to rock the boat or cause waves." I left this training session feeling inspired!

I quickly headed to meet with the deaf girls from Pohnpeii. On this day, only one of them would be present, Sharon, as the other girl had to meet with a tutor at school. Steven (my co-worker) and I worked with Sharon to demonstrate how to create a story book using pictures that she had taken. We showed her how to enter text to go along with the pictures, and she did a great job in quickly catching on to this concept. Our visit ended after a couple hours. I was ready to head on home, ending a long but productive and meaningful week!

On Friday afternoon, my mom shared with me that the person from McCoy Pavilion informed her that we have the thumbs up to have Art Enabled take place at that facility. I am so very stoked about this! Sabrina and I finally have concrete plans to work from; Art Enabled 2005 WILL take place from 10am to 4pm on July 22, 2005 at McCoy Pavilion!!! Please visit for further information, if you wish to participate or volunteer! We look forward to organizing an awesome event that the entire community can enjoy and be a part of.

Thanks again to everyone who posted comments of support within the past week. I also thank everyone who participated in the "contest" to name my iguana art piece. Many unique and intriguing, wonderful suggestions came through. The "winning" suggestion, or at least the one I decided to go with, came via e-mail. You can see the name below in my pictures.

Randomness for the week:

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It sure rained on Saturday. The puddle in the backyard.

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This snail didn't seem to mind the rain as it strolled along

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Introducing......Recy - Royal Elcycer (Royal for his
blue eyes, and "Elcycer" is recycle spelled backwards)
Thanks for ALL the suggestions, everyone!

Until next time, have a great week and don't shy away from taking risks!


  • At 2:24 PM, Blogger cherie said…

    Aloha Brian

    Who the hell is this bus company? Give me a name and a number and I will handle it!! They need a whuppin--I'll give it. And the nerve of this driver to take a phone call after what happened last time!

    Other than that, I'm glad the rest of the week was good. As for you Mr. Brian, you have TONS of positives to list. The one main thing that comes to mind is that you have lived another day to better yourself which inturn benefits mankind. Don't ever forget you have a lot to offer people. Even on your worst days, just persevering is a positve influence.


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