Brian's Ramblings

My thoughts in text, photo, and video form

Monday, February 07, 2005

Busy, Busy, Busy

Another week has flown by, and once again I'm left thinking, "Wow where did the time go?!" This was a week packed with many activities, highs AND lows, joy and disappointment. If you can go through such a range of emotions, it's safe to say you've experienced a full week.

On Monday, I assumed the role of advocate and self-advocated for myself. I contacted the Client Advocacy Program (CAP), which is part of the Hawaii Center on Disability Rights, to request their assistance in resolving my long struggle of obtaining an augmentative communication device with voice output from the Department of Vocational Rehabilitation (VR). I do, indeed, realize that I am taking a risk by sharing this information on my blog, perhaps one of the most public forms of communication. Why would I do this? No, it's not to shed a negative light on VR, nor am I attempting to use this as a forum to pressure anyone. My hope is that someone in a similar situation will hear of my struggle, and perhaps be experiencing much of the same feelings as I am, and realize that it IS okay to explore avenues of help. I had to overcome my "fear" of being labeled as a "blacksheep" or one who causes waves, I had to overcome my strong desire to advocate for MYSELF without calling on outsiders for help, and I had to overcome the feeling that I wouldn't be seen as "nice" if I explored this avenue of help. This isn't about being nice or mean, anyone who knows me can readily observe that I certainly have NO intentions whatsoever to be mean; this is about putting my foot down and saying enough is enough. Waiting patiently for over a year for me to obtain an augmentative communication device is simply ridiculous; it is also a little annoying (maybe more than a little) to have the VR worker be stuck in a system that only allows for a reply of "Please be just a little more patient." Wait a minute here! Is MY patience being questioned here?! I certainly don't blame the VR worker, what more could the worker say? If anyone is to blame, and I have serious reservations about blaming anyone, so perhaps I'll say this instead....if anyone/anything is flawed here, it is the system by which VR workers have to work within. Sometimes the only way one can initiate positive changes in a system is to make others aware of the situation!

I also contacted the transportation company who sent the same driver who I had the near accident with, despite assurances that I would never ride with the driver again. The company was apologetic and the person I talked with had no knowledge of the assurance that someone else in the company made, demonstrating the importance of communication in order to provide quality customer service. I explained the situation as I understood it to be, and I feel confident that this will be the last that I'll need to contact them regarding the this driver and the use of cell phones while driving.

Taking risks involve exactly that....risk! The end result of any action could be a positive or negative. Wednesday was a rough day, as I spent the day trying to recover from a "risk" I took that did not end up the way I expected nor anticipated. I'm usually very conservative when it comes to risk taking ventures, so I really thought this particular "risk" through. I won't get into specifics here in order to preserve my own privacy. But I make mention of this simply to illustrate that things won't always go as planned, regardless of how much you analyze and think of every possible outcome; you can't plan for the unexpected! No one was physically injured, nothing was damaged, no laws were broken, so all is well.

On Friday, I attended a planning meeting for the National Capacity Building Institute (CBI) conference, focusing on transition supports to postsecondary education and employment for youth with disabilities. I am proud to announce that I will have the honor of "hosting" this event, which means I'll open the conference by sharing some remarks and some of the video pieces that I have composed. The CBI conference will take place on March 2 to 3 at the Sheraton Waikiki in Honolulu, Hawaii. Dr. Skouge (Jim) sent me to this meeting in his place, as he felt it was important for me to learn more about the conference and he had other tasks to tend to. The planning meeting was interesting, as I was able to learn of all the many details that go into planning a conference of this magnitude. Resident scholar and professor, Dr. Steve Brown was in attendance at this meeting. Steve is one of the most knowledgeable individuals I have ever met as is relates to disability culture and disability issues in general. I've taken courses from him in the past, and I could never turn in a paper that met his standards of excellence, so I thought, perhaps, I wasn't a "good" writer. As we were sitting at the table, waiting for the meeting to begin, Steve uttered 4 simple words that meant so much to me, "Brian's a good writer." This may seem like a very minor detail, but to have someone who IS such a polished and respected writer complement you on your writing, that means a lot! If you're reading this, Steve, thank you for those words!

After my meeting, I met with "B" again. It was nice seeing him again and on this day he'd work on creating a story using Storybook Weaver Deluxe. He got a lot done and it was great observing him working so hard. We took a break for lunch and he wanted Chinese! So I had to think of where we might be able to pick up some Chinese. The weather looked threatening and I felt more comfortable having "B" wait as I went to pick up our food. He didn't mind as he could work more on the story he was creating. I talked about this briefly last week, but it's a neat feeling to be able to help someone. It also requires you to be thoughtful; for example, when I went to pick up lunch, I knew that traveling back to the office with 2 drinks would pose a challenge, especially when I struggle with one cup! So, I decided to buy bottled drinks, stuffing them into my backpack. I also realized that a straw would sink to the bottom of the bottle, so I made sure I brought back a cup so I could pour "B's" drink into the cup so he could use a straw. I also made sure I brought back an ample supply of napkins, for I know how handy they can be! Little details like this go a long way if you want to make for an enjoyable eating experience. I had a mini hamburger steak plate and "B" had chow mien and roast pork. His plate was quite plentiful but as soon as I brought it back, he devoured it as if there was no tomorrow!

During lunch, Dr. D'Andrea stopped by to visit. We had a great conversation regarding our NIMC newsletter website and our communication system that we've implemented for members of the NIMC. We discussed the idea of using a blog as a means to allow for ongoing discussions, an idea that I borrowed from one of my peers, Elizabeth, who is heading an independent student organization in the Counselor Education program, SAGE.

My other big task is working to organize Art Enabled 2005, along with my friend, Sabrina. We received great support from SAGE, as they included our flyer in their first newsletter! We really appreciate that support! Right now, we're trying to recruit potential volunteers and participants/performers, so if you're interested in learning more, please visit our Art Enabled 2005 website. Securing financial support is another top priority, as we'll need to purchase materials for the creation of the mural (canvas, paint, paint brushes, etc). Donations would be more than appreciated!

Lastly, I'll share a little bit about my meeting with the Sharon and Eulalia, the deaf girls from Pohnpei State. They're doing a great job on their weekly tasks. My friend and co-worker, Steven, Mellanie, their mentor, and I provide the girls with an assignment each week, involving taking photos of a particular subject, such as a "Day at school" or "Food you enjoy in Hawaii." In addition, we provide them with photos they took previoulsly and ask them to write a few sentences about the pictures. This will hopefully help them in learning English and allow them to become more familiar with technology. I'm very excited and happy about the progress they're making!

Randomness for the week:

The image “” cannot be displayed, because it contains errors.
A beautiful sky during sunset on Thursday
evening! I had to take a picture of it!!

The image “” cannot be displayed, because it contains errors.
On Saturday I went bowling with friends. This is
Steven, who
bowled for only the second time in his
life! He did great, though!

Until next time, have a great week! Being strong means knowing how to use the strengths you DO have....advice I picked up from a great Indonesian Randai performance at Kennedy Theater, Luck and Loss: Manandin's Gamble. Always remember to be risk takers, no matter what!

As usual, comments are appreciated and welcomed!


  • At 9:19 PM, Anonymous Anonymous said…

    I hope HDRC advocates can accomplish for you what is right, fair, just, and about time.



Post a Comment

<< Home