Brian's Ramblings

My thoughts in text, photo, and video form

Wednesday, June 28, 2006

Tools for Life Keynote Plenary Session

On Friday, June 9, 2006, I delivered the following presentation at the Tools for Life plenary session moderated by Mark Obatake.

Here is the link to a podcast version of my presentation (Mahalo Dr. Skouge for hosting it on your .Mac account!): My views on disability law and policy

Here is the transcript of the speech:
My name is Brian Kajiyama and I feel honored to be part of such a distinguished and knowledgeable panel this morning.

Today I would like to touch upon 3 main points: How I have benefited from disability laws and policies, the idea of universal design, and lastly I would like to briefly address the future of disability law and policy.

To begin I would like to say that disability laws and policies are great and I have benefited in many ways from them. The main piece of legislation that I am most appreciative of is the assistive technology act of 1998 that stemmed from the Rehabilitation act of 1973.

This act has enabled me to receive assistance to obtain my augmentative communication device that you see and hear me using today to speak to you.

I've had this augmentative communication device with speech output for only about 3 years now, which is amazing considering I'm now in graduate school about to complete my masters in education from the counseling education department in rehabilitation counseling.

I went through my whole undergraduate journey without any device, relying on paper and pen communications to get by in school and everyday life. This was fine but definitely left much to be desired as communication was not a simple process, it took much effort on my part and on the part of the person I was communicating with. People would almost hesitate to ask me any follow up questions knowing that they would need to wait yet again for my reply in written form.

Almost 3 years ago I began to work with doctor Jim Skouge, a professor of special education at the university of Hawaii. Jim was not shy, about telling me that I seriously needed to consider obtaining a device with speech output. People respond to voice, he would constantly stress to me. Jim was right.

After some time of searching, I finally found a device I liked, the DynaWrite manufactured by DynaVox.

I receive services from the division of vocational rehabilitation and as part of my individualized plan for employment, my counselor and I agreed upon listing that VR would help me obtain an augmentative communication device when I found one that I was comfortable in using. Well that time had come.

I was ready to have my voice be heard. So I excitedly contacted my VR counselor and explained that I had found a device and requested their assistance in obtaining one.

Instead of this being a joyous moment, this began the long and arduous process of my obtaining the second most important piece of assistive technology in my life, with the most important piece being my motorized chair of course.

I believe the entire process took about 2 and a half years before I obtained a device that I could call my own. Perhaps this was the standard for timely delivery of service that VR used, I really don't know nor do I really care.

I did everything that VR asked of me, jumping through every hoop and hurdle that was placed in front of me.

I was extremely patient, as I felt that I had to work within the system and with the policies that were in place that were designed to help me. Well, after some time I finally grew frustrated and decided to release some of this frustration in written form through a blog, which is essentially an electronic journal that is web based.

To make a long story short, the VR administration caught wind of this blog after a good friend and former d cab member, Sterling Krysler, decided to step in and advocate on my behalf.

Sterling called the higher ups in VR and suggested that they read my blog to which they replied, "What is a blog?"

After careful explanation, they finally red my blog and immediately proclaimed that what I was going through should never happen to anyone. The conclusion to the story without getting into further detail is that I received my DynaWrite within a week's time after that and I am definitely appreciative of VR for that as it has enabled me to do much more in life including being a graduate student at the university of Hawaii.

I am proud to be a student in the college of education's counseling education program and I strive to be the best student possible.

However, this warm and fuzzy feeling is not reciprocated.

Despite having the Americans with disabilities act of 1990, which ensures that all public places are accessible to persons with disabilities, I have absolutely no access to my departmental office because it is located on the second floor of a building that has no elevator.

I recently met with the vice chancellor of the college and respectfully explained the situation. The response I received was one of these, "Really I had no idea that there was no elevator let me check into that."

Well, having no access to my own departmental office which has student mailboxes and a small library of resources that students are encouraged to use conjures up feelings of being disjointed, feeling un welcomed, and essentially feeling like a second class student who the department could care less about.

We as persons with disabilities deserve to be treated with respect from all segments of society.

I live in Kailua on the windward side of Oahu and occasionally enjoy rolling down into the town, as it is only about a 10-minute stroll from my house.

There is a bridge that leads into Kailua town and they have done construction to improve the integrity of the structure. Despite making improvements, the path on the side of the bridge that pedestrians walk on is about 2 inches too narrow for a wheelchair to navigate.

Consequently in order for a person in a wheelchair to cross the bridge, he or she would need to go into the street with the traffic as that is the only pathway available for a wheelchair user to use in order to get into the town. Each trip into the town and back turns into a game of Frogger if you will, as the person using a wheelchair needs to time it just right to avoid being hit by on coming traffic. Luckily, I have not met the same fate as that of a frog who loses in the Frogger video game but it doesn't seem right that a person with a disability would need to risk his or her life just to take a trip into town.

I keep telling my family that it seems the only way a change will be made to the bridge is if and when someone gets hit.

So what do my 3 stories illustrate?

What I hope that you got from them is that it is great to have policies and laws designed to ensure persons with disabilities have rights equal to their peers without disabilities.

However, it is important that persons with disabilities, their advocates, and service providers be knowledgeable and able to use these laws and policies in order to positively benefit from them.

Yesterday, Lex Friedman spoke about creating communities that welcomed all people, regardless of disability or not. I believe that disability law and policy should ensure opportunities for all people.

I do not believe that persons with disabilities want special treatment but rather wish to have the same opportunities to succeed and flourish in our communities as our fellow citizens without disabilities have.

In my journey to obtain my augmentative communication device with speech output I gained a new ability that is very underestimated in terms of its importance.

This ability is being able to speak for myself. No longer do I need others to speak on my behalf or for me, no longer do people need to guess my thoughts and feelings, and no longer do I need to sit by idly while others speak of and about me.

I would hope that everyone here in this room today will make a commitment or be more open to providing persons with disabilities with the ability to have a voice, one that they can control and one that they can express at any time and in any way they so choose.

By doing so, we move into a model of empowerment where persons with disabilities will be in a position to dictate what kinds of laws and policies will help them, as opposed to having others, albeit well meaning people, say here are the laws and policies that you can use, go out and use them.

I certainly realize that not all persons with disabilities will be able to self advocate for themselves so it will be up to us, as so called leaders in the disability community, to keep advocating and striving for opportunities for everyone to succeed and be an integral part of their communities.

In the case of the lack of access to my departmental office at the university and the case of the inaccessible bridge way in my community, these scenarios speak to the idea of universal access.

By making the building accessible, perhaps by installing an elevator, this will benefit all people. The delivery person with a heavy load, the person who has bad knees and cannot navigate stairs without experiencing pain, and the person who uses a wheelchair will all benefit from an accessible building.

In the case of the path on the bridge, by making that accessible you will allow parents to easily push their infants in their joggers as the go for their morning runs, you will enable bicyclists to bike their way more easily along the bridge without worrying about falling into the street, and lastly people who use wheelchairs will be able to access their communities without having to risk life and limb to do so.

We must avoid the temptation of becoming complacent and see the status quo as the way things can be.

If and when we do this, we cheat ourselves and others that we might serve from living life to its fullest potential.

I am committed to working as hard as necessary to ensure that the efforts of past disability rights pioneers will not fall by the way side. If we waste the efforts of those who have worked so very hard before us we will be showing the ultimate disrespect to them and the disability community certainly cannot afford to do this.

Martin Luther king junior, one of the greatest civil rights leaders of our time, once said, "I have a dream."

It is my personal hope here today that one day all persons with disabilities will be able to proudly proclaim, "I am living my dream!"

I thank you for your time and will turn the floor over to Mark again but before doing so I’d like to share what I’m doing along with Steve Potts and Steve Brown of the center on disability studies in order to commemorate and celebrate the 16th anniversary of the Americans with Disabilities Act along with the arts and disabilities.

This event called art enabled will take place on July 21, 2006, which is a Friday, from 10 to 3 in the afternoon at McCoy pavilion, which is just down the street from the convention center. For more information we will have flyers available at the CDS exhibit and u also can see me after this if you're interested.

Thank you very much and have a great day at tools for life.

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Any and all feedback is welcomed!

6 Comments:

  • At 10:00 PM, Anonymous Dsantos said…

    HEllo Mr. B.

    Man thats a good presentation why dont you put in a book or dvd, Man i was there listening to your presentation but i dont think it was that long. man as i read, its like one chapter already. It might be good if you start collecting your special presentation on to a specail compatable device that can be later sold. ahahah. youre the man now, at the same time an author as well.
    There are many people out there that will be willing and interested in reading your experience through life, education, and services available for people with disabilities. Your presentations on your experiences will really make a difference in the life, and in the work place of developing countries like those in the pacific ocean.

    Thanks for sharing that and wish you share more as well. Keep up the good work,


    Have a wonderful future with lots of cutes on your side, lap, and over you.

     
  • At 5:18 PM, Blogger Lynnett Tohara said…

    brian!!!!!
    it's me lynnett, now from kailua-kona on the big island. i just got through reading your speech as i clicked on your site. what a trip that when i get a chance to see you again my friend, i'll be hearing some voice. it might throw me off a bit i think, since i've gotten so used to our conversations with me doing most of the talking and your writing to me your thoughts!! 97% legible!!! i have a new e-mail address: gonetobigisland@yahoo.com, and my new cell number is 348-2517. i have so much to catch up with you!!! seen your picture, wow, you look older, not in a bad way. i am so proud of your accomplishments in fighting for the advocacy of the overabled. please say hi to your mom and day for me. one day we should go watch a uh game again. take great care and i will read about you later!! you da man!!
    love always,
    lynnett the sprinkler lady

     
  • At 5:19 PM, Blogger Lynnett Tohara said…

    brian!!!!!
    it's me lynnett, now from kailua-kona on the big island. i just got through reading your speech as i clicked on your site. what a trip that when i get a chance to see you again my friend, i'll be hearing some voice. it might throw me off a bit i think, since i've gotten so used to our conversations with me doing most of the talking and your writing to me your thoughts!! 97% legible!!! i have a new e-mail address: gonetobigisland@yahoo.com, and my new cell number is 348-2517. i have so much to catch up with you!!! seen your picture, wow, you look older, not in a bad way. i am so proud of your accomplishments in fighting for the advocacy of the overabled. please say hi to your mom and day for me. one day we should go watch a uh game again. take great care and i will read about you later!! you da man!!
    love always,
    lynnett the sprinkler lady

     
  • At 12:17 PM, Anonymous Anonymous said…

    Once again you so eloquently put into words why it's so important to address the needs of those who are disabled. You're such a great advocate Brian, and you'll make such a difference in the world in the coming years!
    Aloha, Taron

     
  • At 4:42 PM, Anonymous Samuel said…

    Right on Brian. You sound very much inspired in your studies and in your life.

    I am stepping into the application process for doctoral studies in the same field. Thanks for sharing your excitement. It is contagious!

     
  • At 5:55 PM, Blogger littlehan said…

    Hi Brian, re-read your views on disability law and policy presented about 4 years ago.

    I continue to be impressed, you are able to make your point, just as you are able to hit the table tennis ball and the bocci target.

    Let us schedule a bocci game one of these days so that I can regain my skills. NO NOT TT that is beyound me now at my age.

     

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