When Abuse Is A Trade Off

Day 20

When a person gets to my age and stage in life, consistency can mean a great deal; just knowing things are to be the same from day to the next is worth a great deal. So it’s Monday afternoon and the boss is out of the office for a week. Already, one employee did not even come in, one left at lunch, had to get some early time to prep, for Halloween an now a third has informed me she is feeling “icky” and needs to leave for the day…it’s two o-clock and I am about the only one left in the office. This happens all the time, luckily I am no one’s supervisor but they all come to m to ask if it’s OK if they leave. I am surprised they do…I guess because they know that theoretically their absence will add to my workload. But, that’s OK. I agree because this leaves the office the whole back of the office to me. I can crank up my radio if I want, surf the NET or just get my work done in piece. So, I will sit back here, work on my projects and get things accomplished—if the boss calls doing a “check-in” and I think she does these when she’s on the road. She will get me “Ever Faithful”. I always seem to be here when she calls, and this she will remember. I am probably just “whistling in the “Dark”. Actually I may just be trying to assure myself that “all is well” all things being equal. The fact that my program is coming under review by one of our vendors which could actually wipe us out as currently know it. I guess I am not too worried even if the worst case scenario id played out. I would just “bounce” to another office. I doubt if that office would be with the State and I would hate to leave the benefits program I currently enjoy but one does what one has to do. I really think I would get by.

The “time change” happened yesterday. We “fell” back” I really never really notice the change till the first working day after the change when you roll out of the front door to go home and it’s nearly dark. I assume that it will be nearly dark when I exit the train tonight after work. I will need to exercise caution not only well there be truck and cars to watch out for tonight on the roll home but... ghosts, too.

Rolling in the Rain

Do you ever get the feeling you are being set up? I recently have felt all my Spidy sensors going off in meetings I have attended in the community. You know, animated conversations suddenly cease as you roll in the room, you feel more aggression in in comments made toward my program and I am beginning to feel invisible—folks talk about me in the third person even whn I might be in the room . In someways people are too nice, I cath them looking at me like I was dead. “Shields-up!” Things could get grim.

I have known my program has been in jeopardy for a couple of years due to funding loses at the State level and some of the have voiced concern at the quality of information they have been getting. Lately, though, the whispers have been more forth coming and more difficult to iignore. I should be more concerned especially for my own well being but I have kicked round long enough to know these kind of things have a way of working them selves out. I am keeping my ear to the ground though and keeping an eye on the EXIT signs.

Actually, if I wanted to play the “Denial Game” I could just tell my self this is not about me or my program, it's about a feud going on with th office my program is housed in. My boss is under gun ` by people in the community. She has made some great but unpopular decisions of late. Decisions, I totally feel are in the best interest of the consumers we serve and tend to meld with my basic philosophy of Independent Living. So, I could say I am just in the cross-fire and if I get dinged it's just acceptable losses. But the truth, I feel, is that my numbers are down, information has not been updated in a timely manner and our presence in the community has diminished. I could make any one of a number of excuses but that's what they would be excuses. So, I eed to roll-up and take the heat and work to make the program better if we survive, I survive. Until then the office has entered “battle mode” we are circling the wagons and watching our backs.

So with all this in mind I took off at lunch yesterday. I had my hours in for the week at noon, with the evening time I put in with the russians. I needed to clear my head I needed time to myself. I roll in the city—the wet cold city. The rain should have cleared out by noon but a new wave of clouds had just rolled in and the sprinkles had started. I scurried round to a couple of shops but took some of images then caught the train for home. And get this, I drove my van to the train station in the morning because of the rain. I was so lost in thought on my return that I totally spaced the fact the van was in the parking lot. I got a third of the way home before I remembered THE VAN! I turned round and powered all the way back to the train station.

We Are Not Alone

DAY 16


I read a great short story years again in college titled Probability Storm. I wish I could find it again. The story essentially said that probability was like weather it seemed to act in certain ways. Sometimes for no reason an number of improbably events might happen way beyond the frequency of their normal occurrence. Many times when what feels like a probability storm occurs an explanation can be found and the world seems normal again. I felt this morning coming in on the train. In Mid-town I noticed, what looked like a “homeless basket”. One of those grocery carts taken from a market usually pushed by what appears to be a homeless person piled high with all the worldly passions of the person. Later when I got of the train down town to power my last leg into the office I passed another grocery cart just sitting by the light post. This really seemed strange to since I saw another very similar basket twenty blocks South.

The basket was pushed up against the crossing light pole, actually a little behind the pole up against some bushes. In fact I thought on second glance that maybe the owner of the basket was asleep under these bushes but I could not see anything—feet sticking out or something out or something. I was fascinated with the basket that I stopped my progress and dug out my camera and “clicked”. This was someone’s life sitting here in the grocery cart. Clothes, a radio, a package of opened cookies, various amounts of plastic and aluminum there was even an electric griddle. An electric griddle the kind you can buy for a buck at Deseret Industries, Salvation Army or any number of second hand stories in this city. The griddle has been on my mind all day. What a great idea! Since I now use a electric powered wheelchair I keep an eye out for electric pug-ins, I am surprised at the amount of outlets located on buildings down town. These outlets are everywhere. Say you had enough money for a can of Spam, corned beef or even eggs. Find one of these outlets, plug in and you are on your way to a great breakfast or dinner. You could take this to a next step: plug in the griddle, keep it on warm and then sleep on the thing all night when you are outside in the middle of winter. Where did they go?

The vanishing point is just a block away from an NBA affiliate not that means a whole heck of a lot but still this would be a highly- visible area of town—another oddity is this grocery cart remained there undisturbed all through one day and night. And what is the probability that I would see two such baskets in one day? I remember during the Olympics these folks were “whisked away” during the two weeks the Olympics were in town. This has an “Andromeda Strain” feel to it. What if there are multi-dimensional vortexes scatter through this city and these bag people are time and dimension travelers like John Titor? I want to know where they went

Sitting in the Front of the Train

DAY 15

I always sit at the front of the train, whether I like it or not, whether I want to or not. The mini-high block puts the wheelchair using rider on that first car and that the only place a wheelchair user can ride. It seems I am always on display, its always show time. When I ride, I usually have a book and I try to read in an effort to pre-occupy my self during the ride. Many times though when I am reading I can feel the stare. I can feel people looking at me. This happened to me this morning. I am sitting in the front of the train, head down and reading and I get the feeling. Now when I get the feeling I some times jerk my head up with a snap to see if I can catch the leer and catch him in his crip-stare; other times I am more subtle and slowly lift my head and pretend I am doing something else and casually survey the riders till I can find the eyes boring into me.

This morning, when I looked up, way in the back of the train, I noted an attractive older, silver haired women staring beatifically at me. The stare wa so intense and un-compromised that I thought I had mistakenly gotten in the “line of fire”. This stare was obviously for someone else. I as sitting with my back against the wall, there was no one behind me but yet she was starring and staring hard. I had to be the focus of her gaze. It was flat ass weird. This was not the first stare I have ever incurred I shrugged it off and returned to my book. Two stops later I looked up and she was gone. I did not see her exit the vehicle. Why was she starring so intently, at what seemed to be ...me?

I know this is going to sound romantically stupid…but I am a person who was adopted into a great family even before I was born. It is a remarkable story and maybe one I will write about at some point in the blog but not now. The point is I was adopted never knowing my birth parents. Never wanting to know; know these people has never been relevant to me in my life. I have been receiving some pressure from my kids to some degree especially regarding hereditary issues of life spans, disease susceptibility and biological origins. I am the big question mark in their lives. I still have to sort these questions out. But back to the to romantic question, What if I was being stalked by a progenitor? Is this too weird a question? I mean, who would not want to reclaim me? What a find. Go back and see what you gave up fifty some years ago. Reconnect with a life thought lost—It's happening all the time these day. What if you were lucky enough to find him. Sitting in his powerchair, sitting in the front of the train reading his book, wouldn't you stare?

The Russians Are Eating the Russians are Eating

DAY 14

I made the cross town trip in 45 minutes. I was impressed with myself and my vehicle. I got spooked a couple of times when semi’s zoomed pass me and felt as if I was going to be blown off the Interstate but I got there safe. Typically, the address on the announcement was wrong. Lucky for me, however, there were just two building on the side of the street on my side of the street. One building was the hospital and the other was the “Medical Arts” building AKA the doctor’s offices and drug store which support the hospital. One of the two building had to be the site of the evening’s meeting. I decided to default to the hospital and sure enough Jennifer and the Russians were on the second floor.

What an interesting crew. Jennifer( for clarification is the coordinator for the local Sister Cities program) was directing the five docs and five or six interpreters. There were also other Russian folks who are in the area for one reason of the other. In fact one was set next to me. I was amazed at how young the docs were and they were all women. Mostly, OB GYN, but there was an Internist and another a Pediatrician too. None of the docs spoke a lick of English and all but one was under forty years of age and there were attractive for medicos.

The hospital hosted the meal—I would have been happy to have had an open meal ticket and have wondered through the hospital cafeteria. But, the meal was prime rib, two kinds of vegetables and mashed potatoes with skins left on, served buffet style. I have never seen prime rib served this way: the rib was cut into “healthy” portions and piled all together and sitting in a wok over a can of sterno, the same with the vegetables. What a cool way to serve, the line was fast, we got hot food and got on with the evening sort of. Jennifer made us mingle with the Russians by sitting a Russian speaking MD in between the guests. Luckily she sat Professor Goldfarb next to me who could actually speak good English, he is in U.S. to visit his daughter. His daughter is a M.D. too but going to school for further degrees and she speaks very good English. We had a great conversation. I thought it most interesting that he goal was to get his other physician daughter green carded and over to the States at some time. I figured I had put in enough time and just as I was thinking of packing up and leaving Jennifer reveals she is a member of the West Jordan Choir group and they are going to throw a mini concert and they did singing at least 10 selections—some classical, of course, spiritual and at least one was an old Russian favorite.

Now, I am not saying this is a scam- IT IS NOT! But, what a deal if I was doc to get travel over to USA, put up with nice families for seven to 14 days and then get some nice gifts on top of everything else. A number of the OB-GYNOs were heading over to OB following the dinner to “catch” a couple of birth scheduled for the evening.

Pictures were taken—a massive group shot—I will try to post if I can get a copy in digital format. No alcohol was consumed in the dating of this dinner. I bet the Russians wished they were in any other State but Utah.

Beware Raised Brows

DAY 13

Huge staff meeting today or the “Extended Staff Version” somewhere between a “team building” event and how long can I stare at the table top and get on with my job of answering phones. Actually the exercise was not too bad—uncomfortable in some places growth many times is but I am sure some progress was made and will be made. The conclusion of the three hour meeting was that we are going to put some strategies in place and have another “ follow-up meeting” in a month and see what is happening on the outside. My partner dodged the bullet by calling in sick today, I wish she could have been here. I think she always has great ideas.

Now comes the part I hate everyone stops into the office, MY OFFICE , to get my take on the meeting kind of like a debriefing. Is this not a form of gossip, and was not GOSSIP plainly on the group discussion docket today??? I will be good, I will be good, I will be good. This is my new mantra . Luckily, I have an office way in the back of our building. You really have to want to get to my office to get to my office. I hate the “ what do you think…? Question accompanied with the look usually with raised eyebrows. The raised eyebrow, like “you are one of us…trust me”. I have learned you say something and the next thing you know you are in the bosses. I really wanna, gotta believe the raised eyebrow is not malicious buti have learned that when the eyebrow raised somewhere the hammer falls and it usually falls hard. So this is it. All I an going to write on the subject for now. I have learned from Dooce that some things are best unwritten, some things are best left to speculation. Is that healthy?

I have the Russians again tonight. I have to travel all the way cross the valley to Jordan River Hospital—90 streets South and way West. Dinner is at 6:00 pm and I am off at 5:00 so I have but an hour to make the trip during drive-time traffic. I have driven more in the past three months then it seems I have all year. They say drive-time on the West side is always bad. I plan to just chug along on surface streets and get there alive even if I am late. Actually, the event should be cool—five docs from former soviet block Russian states, all women, surgeons, ob-gyns, and others over to US-Utah to learn and be cultural. I am to be at the dinner representing folks with disabilities. Folks with disabilities are still kind a are invisible in this part of the world. Jennifer , who is kinda the director, of this project wants these docs to see people with disabilities from the independent living point of view. There will be interpreters present and I know a small bit of Russian but I anticipate a fast but quiet dinner. I am the disability eye candy.

The Clock Is Ticking

DAY 12

On October 12^th I was approached by UTA(see October 13^th blog) to see what I thought about limiting disabled ridership on certain UTA vehicles due to the elevated risk factor regarding UTA's use of a less then safe bridge-plate for their “San Jo” pronounced “san ho” or just “Ho” light rail cars.

I am going to use the October 12 date for my starting point to count down the days till UTA gets the bridge-plates manufactured. I am using this date because that is the date the UTA spoke with me. Now, I have learned the same rep has spoke with other people if the disabled community and got their input as well which is cool—it's what I would have expected. My question is what date did they quote for completion? IT does make a difference to me. I want those “Jo's” safely use able soon as possible. It's only fair! Once again, able bodied folks are getting the ride when folks with disabilities are waiting up. Same old story because of costs we are regulated to a separate but equal, bastardized transit consumer status. I did not feel good about the trade off then ( there was not trade off except not to make too much of a stink for at least 45 days) and I don't feel good about it now. But I can watch the clock and if they cannot meet their promise then I feel some sort of reparation is in oder.

So, using October 12 as the beginning date of the 45 day count I come uo with Friday November 25. The day after Thanksgiving. This date is straight calendar days. No holidays or weekends. Of course, in my naiveté I did not ask any of these very important questions. Truth be know I was wrestling with the interpersonal battles of “was I a sell out or, why the hrll was I even being asked?” I really was not thinking very straight.

Soccer Uncle

I took some time I had earned this last pay period yesterday or loose it. I did not go into the office yesterday, Auni and Dianne had contacted my sister in law who informed her it was my nephew’s soccer tournament. So Dianne and Auni were going to go over and watch the action. The kid had a game in the morning and one in the afternoon. The games were all the way cross town and I was not sure if I wanted to go on a search and appear at the soccer game but I would see what would happen.

I spent the morning at my workers office getting them to turn some of my 401 K loose. The process was much less painful the I had anticipated the process would be. I was in and out-start to finish in less then an hour. I should have a check in a few day. No problem. I was feeling energized so I thought I would do the trek cross town and find the soccer fields. Forty-five minutes later I had found he tournament. Of course there was, in the best case scenario little parking and no disabled parking, let alone parking with enough space to park a van and deploy the wheelchair lift. I cruised the soccer field twice”sharking” for a parking space and gave the thought of finding something close in. I noticed a church across the street, about a block away from the fields and figured this would do. I was the only vehicle in the parking lot. After all I had my power chair and I can go just about anywhere with the Jazzy.

The time was just after lunch and Dianne indicate that lunch as part of the agenda so I figured I had missed them. I still was not totally sure this was the exact soccer field, they may have been others and the neph may have been at one of those. And tough I an a committed uncle I was just about “searched” out. I checked in to the Operations Table and found there WAS a team fitting my neph’s description and they would re-convene at 1:00 for the next game. I figure I would hand for the next round. If I did not see anyone I knew by then I was off the hook. I had made to effort. I was going to go home.

However, the fam appeared at 12:55 with bags from Burger King—not only were they impressed to see me they had food left over from the ‘Light Eaters’” cold chicken and cold oily fried but it all tested good to me. I was the hero, I came ALL the way out to see the neph play his game. When ever we how up they make it out like this is a major event. We have always told them let us know when the kids play and we will make n effort to be there.

So I took the hero’s welcome: the crip unc who (not only took off work) but motored all the way to the soccer field to cheer on the little guy. Easy duty if you don’t count the fact it took me 66.00 to fill the tak this morning.

Another Lost Day.

I spent the entire morning at the local Vocational Rehabilitation Annual meeting, which is actually their awards meeting. Now get this straight. I AM NOT REHAB!!!! I WORK FOR THE State but not Rehabilitation. I was at this meeting today because I was getting a ward for service to the State and not as an employee but as a member of an advisory board I have served on for about the past 12 years. The award is a joke. I serve on this board because it’s in my job description, they feed me a very good lunch every other month and I can comp the time out for the missed lunch. This is enough for me. The only reason I agreed to receive the award was Gary the Director asked me. I know how hard it is to find recipients for these kind of things. I guess to be honest I must also agree that receiving this award raises the visibility of my operation—which services this agency with disability information.

Cecilia, my partner in the office, went with me or met me at the event. Now Cecilia is great. She is a natural crowd pleaser and crowd worker. Cecilia came to document the award. She did a great job too. I will try to post some images tomorrow when I get back to the office. Cecilia is an optimist unlike me, the perpetual cynic. She actually got the Director of the entire agency to pose with me after receiving the award. The images came out great—I look a little goofy in some but will go great in our next newsletter.

So, I spent the morning at the Division for the Blind meeting room, heard a pretty good speaker and got the award and a free box lunch. I really tried to mingle after the event that was way too hard. I was sitting in the back of the auditorium o I ended first in line so I got my lunch quickly. I have seen State employees react to free food before and it is not a pretty sight. I found a quiet class room and quietly but quickly ate my humble box lunch and headed back to work. Remember on a game day, or all assembly day in Jr high you could never get back to the school mode after the event. It was like your mind had checked out and seemed many of the teachers were “gone “ for the day too. So, too when I got back I just puttered round the office making sure the phones were covered. Cecilia took off on a lunch date with her sister and never came back which was cool with me. I figured she earned the time off for her photo journalism. I had a couple of near crises calls which took me right to 5:00 and beyond.

So with today’s meeting I have had a meeting out every day this week. I hope to have a whole day in the office tomorrow. I am trying to get a project done before Friday but I need a good four or five uninterrupted hours to focus on it. I have accrued more hours I have to use before the end of the pay period, Friday. So, I hope to get off early Friday for the weekend.

I did not bring my award home from the office. I think I am too embarrassed to be seen with it.

Money, We Don’t Want your Stinking Money

I had to go up to the capitol this morning for a meeting at the Office of Elections. I am on a group which reviews grant requests for making their polling placing more accessible, or just accessible. I am not talking bout the new fangled voting machines I am talking about access basics, parking spaces, steps and stairs, door knobs and signage. We have had more then a hundred thousand dollars to work with this year but we cannot seem to give it away.

This is how the grant program, a municipality may have a polling place which is not accessible: i.e., a fire station in a rural community. This is an old fire station, maybe over a hundred years old. The building is still being used as a fire place and once every couple of years the building is also used as a polling place. It’s going to take thousands of dollars to bring this place into compliance—if you can even bring the building into compliance. That’s cool, we’ll give then dough if they can show us how it’s going to be used for the balloting. We are easy, we want to give this money away but we cannot give the money away. The people who need to do the building rehabs either or too illiterate to fill out the grant request or too lazy or too apathetic. What every the reason we have to keep making decisions to send the grant request back to the filer requesting more information . For example, each of the requests are supposed to with three bids or estimations for the project. Contractors really should know how to do this, especially if they wish to win the bid and complete the contract. They just cannot do it. This morning , what looked like last minute pieces of work came in on legal pads, scratch pads, number did not add up , simple math. I counted the words in one quote, like eight words in the entire quote! Unbelievable! We are currently what, less then a month away from Election Day. It’s a sure bet these places will not be accessible for this election…hopefully by next Election Day they will. We are sending the bids back with letter of explanation requesting more information. So hopefully next year their fire station will be accessible.

Hey Buddy Do Ya Got a Charge?

Do you have a place where you can go a place where everything seems to feel right even if you know it's all but an illusion of the moment? I did that today. I had to go have my powerchair, once again, looked at and have work done on it. I still had a couple of hour of over- time i have to use or loose. I had to have the chair worked on and today was perfect for using the time, besides if ai did not get the chair worked on it would literally fall apar with me it. So, back to Magic Rest. The maintenance only took a couple of minutes. I figured as much but I was down down in South town area half a block from the housing authority and the independent living center. So, I figured why get off the clock the? I could really do some honest out reach calls.

I felt good getting out in the community. I came into the housing authority un announced. The director there is an old friend of mine from back in my housing days. It was great seeing Kerry. It had been too long. We had lunch last winter. His shop actually sends calls to our information line so we mixed business and pleasure. Cool. But Kerry IS the director and I came in unannounced, so I hung round long to justify the call and took off. Another block to the north is the Independent Living Center(IL). I have a history with the IL I worked at the IL for nearly 15 years Thats a long time for me.

My experience at the IL was full filling, tragic and to say the least bizarre. It's family. I felt at once at home a strange way. The grown quite a bit since I was there. More staff, younger staff perhaps staff that can not know the history of the facility. The core staff are still there, most of them anyway. Deb, Kim, Julie and Charlotte. We were all there more or less from the beginning or at least the most early days. Deb and I talked a long while, out back in the hot October sun. We are both quads—we thirst after heat. We both use power chairs for mobility. We are both aging quads. We have beat the odds; many of the other spinal cord injuries we have know are dead dying or facing the calamities of advanced aging brought about by living with spinal cord injury. But we talked know deeply what each other ws about.

Kim joined us after a bit. Kim is my vocational brother. Kim watched out for me much more then I him. We must have been linked in a prior life. We are just strange comfortably so. Kim understands and pretty much knows everything. Kim is an enigma , Kim loves being an enigma he work at being a enigma. He loves being an enigma. Kim is the holy grail. Our conversation turned to my trials and tribulations of my power chair. Well it seems that the IL is where many power chairs go to die, more to the point the IL place where many survivors of power chair users send their chairs when the power chair user dies. Kim had to do a little searching but found the exact charger I needed to keep in my office for my downtown charges.

Julie joined us after a bit. Julie is another crip chick another quad. She sat in the office next to mine for years. Julie is quiet, reassuring and always supportive. We Deb is the heat of the sun Julie is the warmth of a thousand summers winking into night.

I left the IL with more then a chair charger, I left restored.

Got Eggs?

Don't you just hate it when you are up for something and you're excited an you already to jump in and get it done then you find that you are missing one or two ingredients. I am not pointing blame this fine Sunday morning but just out-ling my frustration for missed opportunities.

I was going to rise early early today and make bread—that's right, from scratch, yeast driven cracked and whole wheat bread. It's Fall crisp and clear morning like today are great for such enterprises. I used to bake bread every week. I would even grind wheat to make the bread. I love the process, measuring the water, adding the yeast and the sugar letting the creation start to grow. I love seeing the foaming of the yeast begging for something to push so i start throwing in the flour and what other ingredients. Truth told I use a mixer these days, just mixture together. I still knead my bread mass with my hands. I have a theory that to make really great tasting bread it is essential to have the physical contact of flesh to dough. Maybe it the oils in the skin mixing interacting with the dough or the salt` from the human perspiration from the hands but what ever the component is the end result is a flavor enhancement which says homemade bread. Fresh baked flavor wafting through the air can sell houses, bring neighbors to visit offering freshly made jams or jellies of take the sensor to another space in time.

I love to make my bread early in the morning uninhibited by schedules and pressures of other family members. I usually bake a double batch: four loaves of bread. I like to send a loaf to our neighbors and sometimesw to our married kids living in this part of town. I sometimes will make start a soup or stew that will finish itself later in the day, perfect for eating with the bread. This makes for a perfect dinner, especially on a briskly cool or cold Winter's Sunday.

I warm the oven so the kitchen will be warm and welcoming for the yeasts to grow. I let the dough rest for an hour following the first kneading. I am fascinated to see the dough grow to double it size, larger, if I would allow. Then punching down the living mass, I deflate and massage the dough again for ten or for fifteen minutes before putting the dough into the pans to let raise a last time before I finish the task and put the loaves bake. The process is a miracle! I am always amazed at the result of my labors. Perfect loaves of bread that everyone loaves.

However, this is not going to happen today. I opened the fridge door to get the eggs and there were none to be seen. I should have realized we did not have the eggs yesterday. I did not think of it yesterday. And I was out and about. So, most likely no bread today but watch out next Sunday. I'm making bread for sure.

Do U Know Who I Am Part Duex??

I was contacted by the ADA Rep of the local transit authority yesterday to ask what my feelings would be to withhold accessible transportation from a the train on a couple of routes they serve. Ok Ok, so I had better give you the pre amble. The transit authority of our city has a light rail system( if you have been following my blog you know that, I use the system daily and am a committed public transit consumer. About two years a go about the time Olympics were held in our fair city, the authority purchased a bunch of “doggy” cars, throwaways from a transit system in San Jose. These cars are junk-in my opinion , they are old and non-ADA complaint, their old and they were a “good” deal so the board of directors and General manager bought the cars; essentially the cars were cheap. The old adage of “you get what you pay for” has never been more true. The problem is the bridge plate the device the driver uses to “bridge” the space from the loading platform to the train itself. The bride covers the stairs the able bodied consumers use to access the car. The newer cars have them but the older cars the San Jose cars do not and must be fitted with the bridge plates. This is going to take some 45 days. I was asked if this was going top be a problem with me and would I make a fuss about these cars not being accessible by wheelchair? The authority has been using the homemade piece of wood to bridge space. I have used these wooden bridge plate and they are just plain dangerous. I can see a power chair user running right off the edge and into the stair well and possibly death. The Authority's solution—and really the only solution is to not board wheelchair users onto these cars until a better bridge plate can be fabricated and installed.

You see the Authority wants to use these non accessible cars on the University leg of their routes to carry students and personnel up to the campus. The plan is to use the the San Jo's as little as possible, always with an accessible train 15 minutes behind. This is a pain in the butt for a wheelchair user expecting to board to be told “no-you'll have to wait for the next train. I have had this happen to be and it pisses me off. I just do not know what else the Authority can do. I told them if they were sure it would be no` longer then 45 days then I could accept it. I was not happy but I could deral with the inconvenience. In the old days when I was transportation Coordinator for the Independent Living Center I would have scoffed at the offer. Why the hell should I be inconvenienced or the people I served be inconvenienced just so the able bodied, once again, get what ever they want!? I'm old, now, I'll still fight the fight but the other folks with disabilities do not seem to be interested...I doubt these folks even know the arguments and they have a right to expect more. I feel key organizations of empowerment have failed their responsibilities. I rarely use this line so I have little investment now. It's going to get cold out there on the platforms real soon. I think 45 days is wish full thinking n the Authorities part. I feel like a Transit Judas selling out my people for a handful of train tokens.

Prepping for Battle

Dianne put this document together for me to take with me to the meeting Friday with my durable medical equipment vendor--I have images with the actual document which I may or may not apply to this entry.

ISSUES WITH THE NEW POWER CHAIR
10/11/05
1. Require an on-board charger system. Does not meet daily needs without an onboard charger. It was explained that a full battery charge would meet my needs, but it dozenÂ’t. Why was an onboard battery charger not quoted (isnÂ’t it a standard option or was it cut to get insurance approval)? Regardless, I seriously need an onboard charger due to the nature of my work (requires frequent travel for presentations and meetings) - especially prior to winter (and hot hot summers) when I could be (and have been) stranded in the elements. I mainly use public transportation and use my power chair to get to work, go to meetings across the Metro area, then back home.

2. Seating system is painful and near intolerable!
· Sit on coccyx, unable to sit to the back of the chair
· Cushion seems too short for my leg length – hang way out in front
· Left leg hangs off the side of the chair
· Unable to move back - to pressure release, recline - even semi-recline, or enter my van without bending neck and slumping forward with a now quite painful cervical fusion (40 years post C4-5 spinal fracture)

3. Back swivel wheel squeaks loudly when turning despite oiling

4. Front stabilizing wheel tires already come off and are shot. Heavier wear tires available?

5. I am unsure why I ended up with an expensive chair that doesnÂ’t meet my needs and what needs to be done at this point. Something went wrong.

6. This was the most expensive chair IÂ’ve ever had and it seems to suit me less than any other. As insurance will not likely cover another chair for some time, it is critical to get this made right. This could be the last chair of my life!

7. Will work with Dr. Longe and Altius if needed to resolve problems or even appeal that another chair be provided. Question physical therapistÂ’s expertise in making wheelchair recommendations and may advise insurance company not to use her services without additional training or experience.

8. I will do my part - whatever it takes to get this right.

Do You Know Who I Am?

Today is a holiday for us State wokers: Columbus Day. One of those innocuous holidays that just a few of get. This kind of a holiday is more the a gift of 8 paid hours but it is a day that most of the services ARE working and that if I play your cards right I can get a lot accomplished. I wanted to get two items taken care of today go in to MAGIC REST and get my new( becoming old real fast) power chair looked at, and go in to Mobility Solutions and get the switch repaired on my wheelchairlift in my van to make the lift a safer piece of equipment.

The wheelchair just is not right. I sit in it funny and sitting in the chair is painful and recently I have felt less secure. It feel like I am going to thrown out of the chair plus there is the old issue of the non-on board battery charger. In fact, I have been stopped more the once and been told that I did not look right, I was sitting in my chair wrong or was I in pain? Some of these comment were offered by other wheelchair users and some by other wheelchair professional that I have a lot of faith in. What was weird was that after these folks had made their comments I knew the what they were talking about and by the end of this weekend I had had enough and committed to myself I was going to get some kind of resolution. I know this is going to be a long and arduous exercise and I felt with the time I had today this would be a good day to start. The sales guy I bought the chair from no longer works at Magic Rest and I figure this is going to be a problem but I feel my negotiating skills are up to the challenge. So, I call and after 0 minutes of struggling with their computerized phone system, I swear is designed to defeat all but the most resilient consumers, I get to a “human being” let’s call him Brent. I know Brent from the many times I have been to the store before. I can tell he does not know me—though he should because I have visited with a lot. Anyway, I launch into my discourse of I am in pain and I will accept my share of responsibility and if we have to go back to the insurance people or my doc to renegotiate that’s cool. I’ll do that if I need to but let get the issue resolved! Brent started doing his “vendor two step” and I was trying to stay civilized all I really wanted was to come in for a face to face and start the revaluation process. Well, this is when I faltered, I wanted to make sure Brent knew who he was talked to, that I was more then just a casual customer, that I was a State employee who may or may no have directed other customers his company’s way. I made the comment “ DO YOU KNOW WHO I AM?”. This was not meant to intimidate but to clarify it was me the Jazzy guy, who has been in a number of times since purchasing the chair; not, this is me, Mark they guy who runs the State disability information line and who sends you a couple of folks a week who are looking for wheelchair or wheelchair repairs. But , I cannot believe I said that. I sounded like a pompous ass—I really was embarrassed.

He could not do it till 4;00 PM today but that was a no go since I had already scheduled that time to have my lift looked at. I pleaded for another time for today since I was all day and it would be best for me but no way. I caved and scheduled for 4;00 this coming Friday. I have a couple of hours left over from last week I can use if I am discrete but really what a hassle.

The time over at Mobility Solutions went much better. We found the short in my lifts electrical system an rewired the system plus Justin—the owner put a new safety belt on my powerchair and fixed the hand pedant I use to operate my lift when I am in the van. This pendant I broke last summer and was forced to buy a new one since the idiots at Para Quad were not going to look at th broken pendant. I was over a barrel and had to buy the new piece of equipment of be trapped in my van. So, now, I have two pendants…boy do I feel rich.

Just because the way things are

Just because the way things are every once in a while I end up getting drug back into a church. Today was that every once in a while. My nephew was baptized today. He formally got his start down the path of organized religion. This is a major family event for me so I would have been hard pressed to get out of the event. Besides, I love my nephews and want to support them all I can in everyway I can. So my brother and his wife, my nice and her husband( her son was the kid being dunked), her husband’s mom and dad and my 90 year plus mom. The event was early 9:00 am, and three other lads were being put under the water in the same session. Now, this stake or ward puts on quite a production—more then I seen in other baptisms. They has a little program where the “candidates” have significant family member give brief profiles of the “candidate”. There are musical numbers and a lot of “council” from the brother in charge. Anyway, it turned out to be an almost 90 minute production from start to finish.

The boys had a football game the had to participate in following the baptism and we had to kill about an hour and a half so we went to the Farmers market. This was good but the weather began to foul up as the cold front pushed through bring clouds, lower temps and rain. We got melons, squash and various other forms of produce that I am sure we could have gotten at our local market but you always feeling like you are getting a deal buying produce from the back of a pick-up truck haggling Spanish or Western utaheese.

We rendezvoused at the local “ up chuck-a-rama”. I think I hate upchuck—a side of the decadence of the place I just hate being forced to eat huge amounts of food just because you are someone else paid for it. My mom and zillions of others her age just love the place or concept of all you can eat. I am sure it has something to do with the war or the depression of something like that. Actually the event turned out better then I had anticipated—just a little trauma with the inlaws of my nieces but not bad. Then ended up make the scene and Dianne spent a lot of time with the mom in-law to make sure the mom felt welcome. The in-laws live a couple of hours South of Salt Lake so they took off soon after the lunch to beat the ‘ Storm” which was rolling in.

Since Dianne and I had bee the first on the scene we commandeered tables for twenty so we had plenty of room and the family spread out. Dianne and I sat at the end of the table which put me close to the exit lane. My huge power chair always has issues with restaurant tables. So sitting on the end always lets me have the room I need to feel as comfortable as I can be. The family ended up breaking in to smaller family units but basic conversation was OK and the fam did not hover over me too bad. I did my usual protein and mashed potatoes and gravy—the real food does not come out till 5:00 PM but I managed with bbq chicken legs. It was a good day I am glad I was able to participate. So Saturday night Anakah is sleeping over. She and grandma at KFC for their ritual chicken, it cold and rainy just right for an Autumn evening.

And Then it was Friday

And Then It Was Friday

Wow—what a week. It’s Friday and I am exhausted! I have been hammered ALL week. No time for blogging but now the week is over and I am bout ready to start my weekend. It’s the Friday before a holiday weekend I have had just one crises call. Luckily the person has a little bit of a “window” and luckily she will be able to find some low-income housing. Time will tell.

MONDAY was stressful but not too bad the day was spent getting the qusarter’s information in some intelligible form.

Tuesday we were up early on we went in and voted. Evenn though it was just the Primaries. Later, I had my advisory board meeting. It was one of the better meetings we have had in a great while. The meeting was well attended and good information was exchanged. We presented information in a different format. I am used to handing out up to 25 pages of data of all the “referral out” or “referrals in.” The information is so “spread out” that the data say nothing if you don’t understand the whole picture. So, CC but together a document, a diagram, in color, showing calls broken into groupings especially by groups from the various funding sources. Those present loved the new report. They gave some good feed back on how better data and that was it. I spent a lot of energy worrying about the meeting. IK still must do the one report and go back and correct the data points. I need to have this information available should one of the Board members want to see the raw data. Later on, I drove my van to the Pingree Center for kids with Autism. I gave a presentation. Again, well received but very time consuming Thursday I drove to Layton in Davis County for the Brain Injury Conference. I hate to drive and I hate driving out of town but I actually made the meeting in decent time getting lost only once. I was at the event center and set up by 8:00 and I was ready to go. The best part for me at the conference was I got to speak a great with one of the vendors at the conference with me. He knows about my kind of power wheelchair. Mr Spade gave me some great information I am going to use very, very soon. I was getting tired by the end of the conference day but I was not able to go home just yet. I found out the day before that I had my Russian meeting at 7:00 pm Arrghhh! I was surprised, my energy levels were still holding so I had some running round to downtown and I could get the running round done before the meeting was scheduled to start. I did it and did the Russians and I was done and headed home by 9:15…long day, long week but the week is essentially over now. CC is off today and most of the office is gone. Another desertion Friday but the clouds are gone and the temps are up. Calls are slow today and I have hours to burn so I think I’ll head—everyone have a great weekend.

No Time Left Today!

No time today—I am working on numbers and reports all day. I have my Board Meeting tomorrow. I have a love hate relationship with statistics. I am not good at numbers: caring for and nurturing and bring to pass righteous statistics. Numbers which will faithfully describe the behaviors and relative change in the number of calls received by our organization over the past quarter. I am too easily lost in the minutia of numbers. This is why I’ll never be a good manager. I am not driven to be perfect or to direct other to be the best they can be. I really am just happy to “get by” In fact in school I was most happy when I was dead center in the middle as invisible as I could be.

I should go now. Cecilia and are both working on this project. Cecilia is a much better artist then I—but someone has to hold the paints and clean the brushes. I know my place.

Gone Gone the Weekends Gone

The weekends go so fast—here is Sunday afternoon and really, I need to start getting ready for Monday. I am not ready to let the weekend go though but I know if I don’t get ready Monday morning will be freaky trauma laced. So I need to get the homework I did, make sure the right files are loaded on my zip drives, get my power chair charged and ready. Then get everything packed into my back pack and place it by the front door. These are little things I know but added all together with chores round the house which still needs to be done and the weekend is gone. Luckily, for me the cold front got in early with cooler weather and cloudy skies making me feel winter like and more welling to stay inside and stay focused on things which need to be done.

One of the projects I would like to do is see if I can find some films I shot a few years ago. I had them all backed up on my hard drive and when I lost my system earlier this summer I lost all the footage I had of this project. I just hope I have 9mm tapes. I am sure I do. I hardly ever get rid of anything I have produced—granted this makes for a messy life style but reassuring in that I can usually find any originals should I need and I am there right now. I found my recorder now I just have to find a plug in I can use o power it up. Then find the right tapes. Next I down load the footage with my Firewire in to the system then I can use my editing programs to add background music and other sound effects which might be needed. So, I had better get going. I may add more before the weekend is out but I doubt it. Maybe I will have more to write tomorrow.