Friday, February 26, 2010

Bora Bora and Ziplock Bags

I just spent the past 34 minutes of my life fighting to open the packaging on one of those energy bars: Bora Bora, an organic, nothing artificial, supposed-to-be-good-for-you foods. And if it wasn’t for the fact I was quickly crashing in hunger, I would’ve given up and went for the high fiber cereal bag staring at me on the countertop. It only had one of those spring-loaded plastic clips.

I often get lucky with these packaged foods as, compared to most quads, I have a little better hand-finger dexterity. I have a spinal cord disorder, not a spinal cord injury. I got the index finger-opposing thumb thing in my favor. However, this time, I gave up on going for the usual seam down the middle; I was now gnawing on the plastic wrapping -- but to no avail.

I took stock: I’m home alone; no one is coming for hours; I really need to eat something; my neighbor is watering his yard, but heck if I’m going all that way; the more I grind at the wrapper the more sloppy it gets. Expletive!

I took a few deep breaths. Expletive. I thought about the time my wife had left me a tofurky sandwich sealed in a Ziplock bag. Great invention, that color-coded seal, but not quad-friendly. When she came home she found an indistinguishable wad of goo still in the bag, on the floor, run over a few times by someone’s wheelchair. I know, I know, anger management.

I decided that I would open the Bora Bora with my teeth and gimpy hand come hell or high-water -- expletive with an ...er.

I gnawed on each corner; gads, we’re getting messy. I propped up the bar between a bag of mixed nuts and a bag of granola. Well, that didn’t help. No scissors in sight, then again, have you every seen a quad with a scissors? Yikes!

Finally, like a starving animal, I bit the packaging in the middle and ripped the damn thing open -- well, smashed-open. I smeared the contents into my drooling mouth. It was sustenance; it was good; I, (expletive with an ...ing), won. And just at that moment, a loud, hard-hitting noise from outside on the street: KA-TOOGE, as in a speeding motorcycle hitting a minivan broadside!

I wiped my mouth and watched a sunflower seed tumble onto my knee and hit the floor. Lost only one little b@st@rd, I thought.

I rolled out onto the deck over-looking the street. Geez! Someone’s motionless on the hot asphalt; no helmet. An almond-shaped lady in a blue and black muumuu cries out, “Call 911! Oh God, so much blood....”

I watched from my vantage point. Motorcycle gal ain’t moving. Deaf School psychologist is now crossing the street with cell phone in hand. I watched. Neighbors started to gather. Firetruck, ambulance, and police converge within minutes.

An older man, jogger-type haole guy, passes below me on the Kanaina Avenue/George Street corner as people and blinking neon lights swell. He mutters in a facetious tone, “Just another uneventful Thursday, huh?”

I came back in. I didn’t want to see anymore damage done. If not dead, she’ll survive through the luxury of modern medicine. Head injury? Quadriplegia? Better tell her about Bora Bora and Ziplock bags....

Wally Soares

Sunday, February 21, 2010

The Rethinking Disability Brochure

I would like to preface my comments by noting that I have experienced quadriplegia from a spinal cord disorder for the past 32 years. I have lived as a person with a disability longer than I lived as an able-bodied person. My disability is the most inconvenient thing I have ever known. Yet, I wake every morning and smile because I now have another opportunity to demonstrate that my disability is simply that -- just an inconvenience.

My first impression of the Rethinking Disability brochure was that it reminded me of the 1980’s disability movement: when people with disabilities were struggling to find their own identify and were compelled to educate the public on what they were thinking and discovering about themselves. The brochure has an amateur appearance of something created 25 years ago, with block-lettering and simple clip art. It reminded me about a man named Michael Winters, the first Director of the first Center for Independent Living in Berkeley, CA. Gads, such humble beginnings with so much to tell the world.

Similar to the Civil Rights movement of the 1960’s and the Women’s Movement of the 1970’s , the Disability Movement of the 1980’s was a time to wave your flag and howl in disapproval of non-acceptance. But that was then. The stage is different now. Now, it’s “show” time.

I believe the greatest flaw of the brochure is that it tells the reader what to think. It cautions the reader up front that reading the brochure might cause uneasiness -- like an “R” rating on a Hollywood movie. It offers forth a “credo,” a statement of the belief that (able-bodied) people ought to accept people with disabilities because, hey, historically us crippled folks have been screwed and now we’re gonna take our rightful place as citizens!

Well, I don’t want to be told what to think, or how to feel, and what attitude to have towards people with disabilities. My thoughts and feelings come to me naturally and I form my opinions and beliefs from my experiences. I agree and disagree with notions I hear and read everyday.

I know people with disabilities that I do not like. By choice, they are not productive, contributing members of the community. They lie, they cheat, and they steal. I don’t like them, so I do not associate with them. I do not have to respect them just because they have a disability.

Don’t tell me disability is an attribute. Show me. Show me the color you bring to the work environment or the playground. Don’t tell me to be still and listen because you are attempting to communicate in the only way you can. No! Find another way. A good teacher presents the lesson verbally, auditory, and through movement and motion. I like the way Deaf people do it. They have Deaf Pride. They hold Sign Language Festivals. They “celebrate” their language and culture. They invite the hearing community to look and listen as they celebrate. And to those who don’t get it, there’s always next year’s event which might offer a greater understanding.

With my quad-hands, I fumbled to open and read the 6-panel, folded paper brochure. I thought to myself as I struggled, “This is why I go to the internet for the news of the day instead of subscribing to the bulky Star-Bull.”

Remember Millie Rogers? She was a person with a disability; cerebral palsy. Her slurred speech was difficult to understand. She and I were not the best of friends. In an educational workshop, I once heard her say to a group of folks, “If you can not understand me, too bad!” The reaction from the group was nervous laughter. This was the response Millie wanted, not because she was making a point, but because she thought it was funny to say those words and be understood saying it. I wanted to stand and yell to her in disapproval. The problem was I can’t stand and it wasn’t my place to interject.

Millie Rogers died in 2007. I never got to tell her how her statement made me feel. So Millie, if you are reading this, I would appreciate that the next time you have a captive audience, tell them that you take complete responsibility for communicating your message. Tell them your speech disability is something for which you will take responsibility by utilizing an interpreter, a speech-to-speech relay person, or a speech-generating device. Show them the beauty of your thoughts and words in a PowerPoint presentation. And if you want a laugh, share a good, clean, Portagee joke.

It’s show time folks! People with disabilities need to step up their performances. They need to demonstrate their skills, their abilities, their capabilities. They need to demonstrate that they possess an awareness of their political rights by participating in the political process. Do not expect to be respected. People with disabilities need to show how and why they are worthy of respect because they are willing to earn it.

The Rethinking Disability brochure seems to have an underlying attitude of entitlement -- even though it suggests a position otherwise. Being entitled to something, like respect and your annual leave, is still something that must be earned. The brochure says it would give the reader suggestions for using respectful language, but it offers only one example: “wheelchair user” instead of “wheelchair bound”.

I can think of at least 10 other examples, but then again, I agree with the lyrics in John Mellencamp's song, Peaceful World:

People know this world is a wreck
We're sick and tired of being politically correct
I see through it now but I didn't at first
The hypocrites made it worse and worse

Lookin' down their noses at what people say
These are just words and words are okay
It's what you do and not what you say
If you're not part of the future then get out of the way....


Remember that -- it’s what you do, not what you say....

I found the Rethinking Disability brochure of little value. I only kept it so that I could reference it in this response. I found it “thought-provoking” for the opposite reason of its purpose. It did not offend me; it frustrated me as a person with a disability. Why? Because it ought to have a greater message; a message of new horizons, new abilities due to technology, new capabilities because disabled people themselves have risen above the banter of blaming others and have copped a new attitude steeped in responsibility of self.

I am responsible for everything that happens through me.


Wally Soares

Dream a little Dream of Me

Yesterday morning, as my 9 year sauntered by, she said, "Daddy, I had a very odd dream....” I told her most dreams can seem odd, but dreams represent a feeling, a mood, a memory, or something from your unconscious. She didn’t understand the word “unconscious”, and I could tell my response was unlike mom’s who would have responded: “Oh baby, was it a scary dream, are you all right?”

The kid stared at the hem of the shower curtain as the morning breeze tickled its slightly molded hem. “... there was a waterfall and a windy mountain top, and these bully boys were guarding this trail....” She tried her best to describe these air and water images, but lingered in thought and then grew tired of the effort of explanation. She tittered on the toilet seat then muttered something about being stronger than those bully boys.

Then I started thinking about my dreaming -- dreaming as a person with an acquired disability. I’ve always found it interesting that I often “see” myself as an able bodied person, walking and talking, no wheelchair, but usually involved in an “odd” scenario of having to take the accessible back-door entrance through the kitchen of a Las Vegas hotel -- before resuming the action upstairs of me against my chain-smoking sister grappling over a translucent cream puff.

However, now at age 50, thirty-three years into quadriplegia, those walking vs. rolling fight scenes are more skewed; less part of the travel method and more about who will go through door #3 with me since my karate chops are weak. And yet, at times, I walk on water and tip-toe through tulips; I fly through the air with the greatest of ease.

I often dream from the perspective as an able-bodied person, but what about blind people? People who acquire vision loss? Folks blind from birth? I decided to call a few friends.

A young lady [my age] who loss her vision in the past 5 years said she seems to have retained lots of visual imagery in her dreams, but acknowledges people have obviously aged and must look different too. When asked if she has an “aged” view of herself in her dreams, she said no -- “I never seem to see myself in my dreams, but I know I am the one starring in the movie.”

A forty-something guy who experienced vision until age 7 said he has retained visual imagery in his dreams too, but his imagery seems to have faded over time -- and I heard him describe his dreams in terms of places and surroundings.

An older man blind from birth described his dreams in terms of taste, smell, and made lots of tactual sensory references. He asked me if these references were unusual for me as a sighted dreamer. I said that I might recall a specific reference, but every dream is a very visual thing.

I suppose deaf people -- those deaf from birth and those latecomer deaf, experience another realm of “silent films.”

And you thought this disability thing was less-than-fascinating.....

Tell that to an 9 year old.

Shake that Groove Thing

The other day I was reading through movie reviews before making my next NetFlix choice, and the reviewer referred to the plot of this particular foreign drama as “... robust as the handshake of a gimp.” At first I chuckled to myself at the analogy then back-peddled, “Hey, wait a minute, that’s not a very nice comparison, and that’s me -- I have the handshake of a gimp!”

In my line of work, I meet new people often: customers, clients, and mainland visitors. A customary handshake often opens the meeting and concludes the sale. I am a quadriplegic, and I have the more-or-less fist offering. We meet, you offer an open hand to shake, and I stick out my arm with a fist -- sort of a limp thrust forward.

The responses to my handshake are interesting. From good to bad: #1. the double hand coupling reception, no problem, I got you covered buddy; #2. the single-hand, paper and stone; #3. the ok, let’s fist bump like NBA brothers; #4. the single-hand, whoa, this is awkward, I’ll just pinch your gimpy thumb; and #5. the single-hand offer then pull-back, I’ll just pat your shoulder instead....

Since #3 seems the most hip, I find myself voicing the phrase before we shake, “Give me some knuckles....” Kids respond best to this approach, although most take you up on the offer with a stiff punch. Older folks don’t understand the request, but they usually do the #1 handshake anyway. It’s all the people in between that find the handshake of a gimp awkward. And I don’t blame them, we depend on that first touch to convey something about ourselves. The handshake is thought by some to have originated as a gesture of peace by demonstrating that the hand holds no weapon.

I found one work-around to the peculiar gimp handshake: at a distance, acknowledge the person with a smile and do a simple head bow before they get too close, then start turning away, gesturing the ensuing route to be taken. Of course, this doesn’t work when the person is overly enthusiastic, and approaches saying, “Hey man, I heard great things about you; let me shake your hand!” Oh no, limp thrust forward; response #4.

Shaking hands is considered the standard greeting in business situations. In casual, non-business situations, men are more likely to shake hands than women. It is considered to be in poor taste to show dominance with too strong a handshake; conversely, too weak a handshake (sometimes referred to as a “dead fish”) is also considered unseemly due to people perceiving it as a sign of weakness.

I’ve noticed blind people have trouble with handshaking too. Have you ever seen two blind people introduced to each other? They often do the air-shake-thing before awkwardly bumping the backs of their hands, then proper connection is made.

Hmmm. What about Hawaii Senator Dan Inouye, Medal of Honor recipient; combat wounded veteran of WWII? He’s a big-time politician. He is a right arm amputee. He does the left hand handshake -- and has shook more hands as an eight-term U.S. Senator than I will ever shake in my life. His handshake is that casual, take my left hand, my right is clearly absent. And most people leave with the elation of having had the opportunity to shake the hand of an accomplished man.

Stephen William Hawking. He has experienced a neuron disease for practically all his adult life. Yet it has not prevented him from having an attractive family, and a successful career in the fields of Applied Mathematics and Theoretical Physics. How does this severely disabled quadriplegic shake hands with his fellow scientists? I guess he really doesn’t do the handshake thing. Probably gets a lot of #4 and #5.

There’s probably no resolve on this matter. As long as handshaking is the norm, creative work-arounds need to be honed. Allrighty then, someone is at the door; got to go. I hope it’s an older person.

What's in a Name?

Island Skill Gathering has been in business for 21 years. Did you know that? Gads, when I think of the humble beginnings in a two bedroom apartment....

We’re doing this website and blog to increase business name recognition, and hopefully business traffic. And speaking of the business name, let me note my pet peeve: people who say and/or write Island Skills Gathering, or Island Skilled Gathering. Come on, after all these years, it’s Island Skill Gathering. Yes, it’s an unusual business name, but it’s certainly not a play on words or a deliberate misspelling. Skill is a single noun just like apple is a single noun. You don’t say apples gathering, right?

My wife Valerie and I chose Island Skill Gathering because it described what we were going to do: help people with disabilities gather the necessary skills to live independently. We were teaching independent living skills. We were skill trainers. Clients were skill gathering. We live on an island. Island Skill Gathering, get it?

We believed the business name was short, unique, easy to remember, and easy to spell. I thought it sounded better than Aloha Skill Gathering, which was the other consideration. And Island Skill Gathering seemed to lend itself well to the abbreviation ISG. Two other contractors we worked with initially, Ken Smith and Robin Higa, had named their businesses better: New Abilities and Access Abilities, respectively. I really like the name New Abilities. I wish I came up with that name.

The community-based service agency with the name I don’t like is Abilities Unlimited. No one has unlimited abilities -- especially people with disabilities. I should know, I am a person with a disability. It just seems odd to me to introduce a client with a developmental disability, or the more politically correct term, intellectual disability, and then say he/she is from Abilities Unlimited. Say what?! I know, the focus suppose to be on the things people can do, not what they can not do. Perhaps then the name ought to be Can Do, Inc.

Our legal corporate name is ISG, Inc. We do business as Island Skill Gathering. Most people refer to us as ISG. Should you be expected to know our business name and how to correctly say or write it? I don’t think so. It’s my responsibility to remind you of our name, our number, and the wonderful products and services we provided. Jack in the Box does it 24/7/365 in numerous formats.