National Action

Blog September 28, 2015 – – Monday

I have never been part of a national action before so I was really not sure what to expect. Oh, I have been part of the local action scene years ago when we were striving to make the local bus system accessible to people with disabilities i.e. people in wheelchairs. In the past we have posted regional actions where agitator/activists from other states have come to Utah and we staged actions again for access to the local bus system as well as local Medicaid trying to increase options for folks with disabilities specifically dental and increase the Medicaid allotment checks. And again, that is bringing into the community for five people maybe a few more were supposed to be pros at direct confrontation advocacy – – nonviolent see Martin Luther King. But a national action that's way different. A national action is bringing in as many people as possible and staging numerous actions over numerous days.

Yesterday was the beginning of a national action here in Salt Lake City from what I can tell the goal of this action is to bring an awareness to the local electorate and governor and other type bureaucrats up and down the food chain of the need for more choice for people who are destined to live in nursing homes against their well. As far as I can tell this action is being hosted by the local DRAC folks, DRAC is what the local ADAPT became, In my affiliation with the local Independent living Center I was fairly active in ADAPT . In my Association with the local ADAPT I found this organization and its affiliates to be a bit scatterbrained but their motives are honest and true. Yesterday was the kickoff event I wanted to be part of it for host of reasons but mainly to show my support for local ADAPT and Barbara Toomer who is been the director of this is that for years directly and indirectly.

In honesty I was a bit reticent I didn't figure a lot of them show up is going to be another failed project however I was surprised I got to the hotel saw how many folks with disabilities had shown up. There may have been 100 or more which is a lot when you think about It. Sadly there were only three or four folks from Utah in the delegation. They have published the wrong times and so I thought I had our before the events and actually there were staging to begin event as I roll their. There is government action role basically a serpentine wheelchairs from the hotel at 161 W. 600 S. six blocks north to the state capital. Utah has huge blocks and that is a whole other story. I was really quite spooked at not

knowing if my chair would make the roller not is not only do you traverse 6 to 8 blocksBut the last 2 to 3 blocks ours the uphill to the state capital. I was with my buddy Andy was the director of a local Independent living Center here in the state was a quadriplegic similar to me. And he has pretty good upper mobility are in the line and pushes a manual chair Andy is also a big lad and I knew this is going to be a near fatal push For Andy.

We started out and I was included in the red group just the first group Barbara Toomer's group at The Head the of the line. We were to roll in a tight single file line, serpentine they had disability cowboys rolling up and down the street to make sure we stayed in line. It was a okay experience a little short of horrible but it was a long role. Andy held on to my chair for a while trend give us aid but finally had to disengage is restarted the upgrade. I made it to the top with about 60% charge but I knew that would deplete quickly trying to get down the hill to train a bus that I can use. I ended up calling Ute cab Became got me and drove a couple blocks to the train for less than five bucks – – I love this service.

ADAPT will be in town for the next 3 to 4 days and will be having actions during those days. I kind it would like to take advantage of being part of his national action but my power chair just is too painful and I still wait to see if the new chair will be repaired it's all a challenge. I'll keep you informed if there's any changes

National Action SLC

Over the years sure I have commented off and on about my involvement in direct confrontation actions in the area of disability. This is a rule I do not relish it was something I could do that was part of my job description, or at least I thought was part of my job description and I treated it as such. I've never gotten arrested as a result of my direct action confrontation but many of my college have. I really have never become involved on the national level for one reason or another, most likely because I rarely went on the business trips where national actions were happening.

Last week it came to my attention that local ADAPT is hosting a national action Salt Lake City next week or beginning Sunday. Quite frankly I be surprised if they pulled in many national adapters but you never know and I feel I better be ready. I have been contacted a couple of times by Barbara Toomer who is sort of all things ADAPT in this city – –And country for that matter. I've been invited to a couple of the planning but really if not been inspired to the point of attending but with physical workouts and broken power chairs I haven't been really quite available. But maybe I'll drop in on the the pre-meeting for the Sunday action. It sounds like it's going to be a march from downtown Salt Lake up to the state capital building. I really think this will only have an impact If three or 400 chairs show up. But I would like to join in the March as a show of solidarity. I'll be quite interested to see if and how the local Independent living Center is planning to participate. If it sounds like I'm a bit reticent in this whole event is because I've dealt these folks before, at least the local group and have never really seen a lot of organization take place. There volunteer group that you know what they say about volunteer groups only being as strong as the weakest link is true and anyway something like this takes a lot of planning. At least I think it does. However, I'm willing to give them the benefit of the doubt and I'm willing to be supported. Going to the planning meeting for the premeeting before the event on Sunday to see what comes I willat least Be able to say I was there regardless what happens. I wish I had a better chair at least one that is more comfortable and butt protective.

Backing Up the Back Up Chair

It is definitely a drag when your backup chair needs its own backup chair. I am of course having to use my backup chair sets the wheel fell off my main chair – – see yesterday's post. However, I broke the footplate on my back and chair so I have to ride with my foot crossed over my right foot in order to use backpack chair. This means a trip over to Utah Center For Assistive Technolog or U C A T. Actually I am as fortunate as hell getting our time from the U C A T staff. There are booked into the next couple weeks. I sure hope they're able to put together some form of solution to the problem of the missing Footplate.

Y'all remember that we bought this chair from th Create program a few weeks before my new chair came. Part of the concept was I would have a backup chair in case I needed one. For a prophetic was that? However I managed to bring the left footplate on the chair couple days after I got it. Since my new chair came shortly thereafter I sort of forgot about the backend chair and its growth case and that's not even true I remembered I just never got around to getting back to Create to repair the issue. There's no excuse for this I know better I taught the need for keeping your equipment up to snuff and I'm the biggest Abuser.

UCAT is a program of the state, UCAT's a state agency. One of the few state agencies/programs which I think really does a great job for people with disabilities. Fortunately for me UCAT is a little-known piece of work that is incredibly positive. I think of solutions and ideas for needs of people disabilities problems you might have solutions. You have a shop where they can manufacture solutions which is what I am hoping for today. They're becoming more and more busy as people find out about them but usually you can still weaseled yourself in for service if you really need to which is what I did. Hopefully I will have a better day than yesterday trying to keep my feet on the front panel and the weight off my ass.

Dianne will drop off the other power chair to Alpine medical yesterday and they are going to look at and hopefully sooner than later but I'll be surprised As they get to my chair of the week and or even next week.

1707 hours… 09 2315 – – Wednesday

What a day!? I got to the UCAT building and again I was two hours before my scheduled appointment and that's cool I had to do besides I wonder visit with the new director of UCAT Michael Wallenstein (close enough). Michael's old friend of mine used to sit on my Board of Directors when I ran an information line for the state of Utah. The action is a great guy and one am glad that the directorship from UCAT he'll make a great asset to that organization – – but I spent an hour visiting Michael didn't work on my chair and it was more money than I thought was going hundred bucks but I guess that's the price of doing business even if you do have the state agency guy finally broke it down to 50 bucks parts 50 but flavor is probably an hour and a half later so I guess on that level I got a deal. And I think it a good job manufacturing footplate that is not withstand the stress I put on the footplate. It was a long day already from especially in this backup chair even with repaired footplate. The seat is really too big for me and my scoliosis lists me over to my right side I need to get some sort of pillow our case a briefcase or some stick and that area of sufficient strength I also experience a lot of stress on my butt/right cheekSpace if I'm going to use this chair for any significant period of time. I really need this support when I work out and when I use the Saratoga Silver. Knowing this I can get myself better squared away for tomorrow. When we will do it all again.

Tuesday's Challenge

My life just gets more bazaar with each and every day. Yesterday, which I will refer to as Miracle Monday started out normal enough. Salt Lake is currently in that span of time for summer closes And winter Socks us and where the days are nearly perfect. Days beautiful from sunrise to sunset temperatures almost in the 80s sometimes almost 90 but perfect days for being outside riding the  system. We will probably have this kind of off and on for the next two weeks.  The dates are gorgeous. I went to my morning workout over and sugarhouse with no issues to speak of. I wanted to get home as soon as I could use the restroom as well As get some lunch. I thought about purchasing something on the way home decided just to get on.

One of the strange events in the morning or afternoon was that I usually get off at the 53rd St. TraX station and from there I there wait for the 201 southbound Or I just take off and drive my Chair home Usually going over the overpass and down 300 W. Today however, I decided to get off the train at fashion plates are 6400 S. and then navigate third west North until I get home.I just crossed the bridge in the industrial section and was passing by garage where I used to take the cars for repairs. A place called technic care operated by two brothers they been there for decades. I was on the side of the road heading west on my chair tugged to the right And in an instant my chair spun around and I was perched on the side walk and seem to move my chair. I have to admit I was a bit disjointed. This event has been witnessed by an adolescent employee of a daycare center right front of me. I would find out her name is Evelyn and she stuck by me for the next hour. I realized I had lost the entire off my chair when Evelyn picked it up to show me why I was not moving. For a moment the whole thing was surreal I could not figure out what had happened to my chair. Whatever was going on I was not going anywhere fast. Didn't take long for a small crowd to form. People returning from lunch to work and saw me on side of the road. A couple of guys were returning from lunch, even if Buddy of mine named Paul who used to sell me my wheelchairs stopped by And stood by me until the end. I eventually was able to call my wheelchair shop a place where I purchased my chair they ended up sending out to technicians who were useful just barely. Finally we were joined by officer Meacham, Quite a nice young man who seem to care.

It took some talking and convincing of the guys from Alpine medical techs who came to work on my chair.  These guys wanted to send me home in an ambulance but there is no way I was going to incur that kind of cost. I finally had to sign a waiver of responsibility and I finally got my chair together to the point that I can actually drive it for how long we don't know. I was able to call Dianne came and got me in a wheelchair van. I got home stayed in the chair for the rest of the day and we got out the old chair see what we can do. Guys from Alpine said they will try to work on my chair and see if they can get a fix goingBut I don't whole lot of faith these guys… Yet.

This morning I had my brother put me in the old quantum 6000 with only 1 foot pedal and I have been gimping around all day. Just painful and difficult sitting and keep both feet on the one pedal. I called UCAT, and of course they are slammed but will be in for an hour tomorrow Wednesday and hopefully we can get some sort of fix for the backup chair. I'm getting a bad feeling about this challenge but it will pass I'm sure as all things do. I just have to be upbeat and I'm going. Thank God I have Dianne in my corner she took the chair in the Alpine's afternoon. I bailed on Anakah's game hopefully I can make it another time out system matter waiting and hoping keeping our fingers crossed.

My Monday Miracle

My life just gets more bazaar with each and every day. Yesterday, which I will refer to as Miracle Monday started out normal enough. Salt Lake is currently in that span of time for summer closes And winter Socks us and where the days are nearly perfect. Days beautiful from sunrise to sunset temperatures almost in the 80s sometimes almost 90 but perfect days for being outside riding the system. We will probably have this kind of off and on for the next two weeks. The dates are gorgeous. I went to my morning workout over and sugarhouse with no issues to speak of. I wanted to get home as soon as I could use the restroom as well As get some lunch. I thought about purchasing something on the way home decided just to get on.

One of the strange events in the morning or afternoon was that I usually get off at the 53^rd St. TraX station and from there I there wait for the 201 southbound Or I just take off and drive my Chair home Usually going over the overpass and down 300 W. Today however, I decided to get off the train at fashion plates are 6400 S. and then navigate third west North until I get home.I just crossed the bridge in the industrial section and was passing by garage where I used to take the cars for repairs. A place called technic care operated by two brothers they been there for decades. I was on the side of the road heading west on my chair tugged to the right And in an instant my chair spun around and I was perched on the side walk and seem to move my chair. I have to admit I was a bit disjointed. This event has been witnessed by an adolescent employee of a daycare center right front of me. I would find out her name is Evelyn and she stuck by me for the next hour. I realized I had lost the entire off my chair when Evelyn picked it up to show me why I was not moving. For a moment the whole thing was surreal I could not figure out what had happened to my chair. Whatever was going on I was not going anywhere fast. Didn't take long for a small crowd to form. People returning from lunch to work and saw me on side of the road. A couple of guys were returning from lunch, even if Buddy of mine named Paul who used to sell me my wheelchairs stopped by And stood by me until the end. I eventually was able to call my wheelchair shop a place where I purchased my chair they ended up sending out to technicians who were useful just barely. Finally we were joined by officer Meacham, Quite a nice young man who seem to care.

It took some talking and convincing of the guys from Alpine medical techs who came to work on my chair. These guys wanted to send me home in an ambulance but there is no way I was going to incur that kind of cost. I finally had to sign a waiver of responsibility and I finally got my chair together to the point that I can actually drive it for how long we don't know. I was able to call Dianne came and got me in a wheelchair van. I got home stayed in the chair for the rest of the day and we got out the old chair see what we can do. Guys from Alpine said they will try to work on my chair and see if they can get a fix goingBut I don't whole lot of faith these guys… Yet.

This morning I had my brother put me in the old quantum 6000 with only 1 foot pedal and I have been gimping around all day. Just painful and difficult sitting and keep both feet on the one pedal. I called UCAT, and of course they are slammed but will be in for an hour tomorrow Wednesday and hopefully we can get some sort of fix for the backup chair. I'm getting a bad feeling about this challenge but it will pass I'm sure as all things do. I just have to be upbeat and I'm going. Thank God I have Dianne in my corner she took the chair in the Alpine's afternoon. I bailed on Anakah's game hopefully I can make it another time out system matter waiting and hoping keeping our fingers crossed.

Fair Beware

Yesterday I went to the state fair! The reason I have this as being a big deal is because I wasn't going to go to the fair. I would've been much happier to stay home and be a recluse while the rest of the family went to the fair. In fact Saturday afternoon I was not going to go to the fair and I said as much. But as I thought about my statements and myself are kind of had a change of heart. Granted I still do not want to go there but there are those who would like to spend time with me at someplace like the fair. And I do like spending time with these people I call family didn't want to myself what a fool I am not to take advantage of something like this. So, I made the decision often fair is going to go the next day, Sunday.

I would like to blame the mood, my mood, on the that I had a poor night's sleep and I did. I nearly fell out of bed my legs somehow spasmed over the side of the bed. I spent a good part of the our early morning trying to pull myself back on the bed losing precious sleep hours. So I was a grump. I was hoping I would get a second wind carry me through as an honorable grandpa but that really didn't happen. Now mind you and my family goes to the fair it's an all day event we got There at about 10 am And begin to wander around fair. We checked out the animal barns which I can always do without. Since I was raised on a farm I've had my share of animals groomed or otherwise. Even if stalls are maintained in the air conditioners working the fact remains these animals were meant to be outside not inside where poop is poop No matter how many times you take poop out on a silver fair shovel. I don't like pigs unless they are on a plate the same with chickens And turkeys. Rabbits and pigeons Is just a waste of time unless you trying to kill time which which we did at the animal barns. We dined on fried food fair style were talking about corndogs, elephant ears with cotton candy. I could really tolerate this which is strange because I used to love fair food.. It was the only time you can get real corndogs but now the real corndogs are foot-long and cost $7.50.! I had a bite of one just isn't the same corndogs and used to be. I'm just not fun. Seems like we've been two or three times during the event. Yet ice cream, root beer and elephant ears. I have to confess I did purchase a couple bags of jerky at some point way overpriced but I think I will enjoy jerk.

Morning migrated into afternoon and it was time to subject the grandson to the amusement rides. This was his first real fair with real right and he took to it like a duck to water. We spent the next four or five hours watching them ride the Ferris wheel, bumper cars, A roller coaster thing and other rides I can no longer remember. He had a great and everybody else had a great and I suppose I get to in a grumpy grandpa sort of way. Nothing is more precious than time with family.

Rivers Of People – –Farmers Market

I had a pretty rough night, I tossed and turned couldn't get comfortable I couldn't slept very much But finally when daylight came and I could no longe force myself back to sleep No matter how hard I tried Dianne got me up and that felt pretty good – – much better than I should for the night that I spent. For some reason I was committed go to the farmers market today. I really like the idea of the farmers market, I have this vision of local neighbors bundling their produce together heading down to the park and having a stall where they could sell their goods. I am always somewhat dejected when I get to the park and find there are no neighbor selling your wares but professional farmer families Selling produce out of the back of their big trucks. So is not neighborhood Farmers statewide farmers. I don't know why if I think about it too hard I quickly become disenchanted and look for good reason to leave.

It's kind of weird, I got the market today after waiting for the bus which by the time that I got to the bus stop was running one hour headways. So, the market was pretty willful people when I got there, What I found in find really strange is that the vendors are in the exact same place they were last year in all the years before I've got to the farmers market. The bread vendors or Baker's were in their spot, the Dragon Lady and her melons were in her spot in the corner, Schmitz: truck of course was in that spot nothing to change. In fact I didn't even take pictures because they look exactly like the pictures I took last year and the year before. Even though it did not recognize anybody in the crowd I recognized everybody in the crowd. Lots of old folks, lots of old hippies, lots of serious young folks who wish they could have been hippies but now settle for food purists. Always amazed at the amount of Russians in the crowds. Walking around in a group talking Russian but looking like everyone else. The only thing I saw a change a little bit was the kids from the farms. You get to know them… Not know them but them They've grown a year just a little bit older. I always think about how much they probably hate being there giving up their weekends every fall to help out sell the family produce. They probably been strong-armed by parents who make deals with them are actually employ them. Like if they help out all year they will help purchase the vehicle the kid wants or more importantly help the kids a tuition the college purchased close in electronics for high school. It's the age-old story the kids are always indentured servants. The kids looked healthy and most of them actually looks sort of okay climbing into the truck bringing out watermelons, bags of corn boxes of tomatoes in all other items of produce.

Truth be told I wondered why I wanted to be there the second I got there. There are tons of people and dogs and kids everywhere.. I had to get into rivers of people flowing in one direction or another. It's not that great deal of food wise or moneywise it's just something to be which is good for me. What I needed so when I go somewhere on Monday and they ask you what I did this weekend I have something to tell “oh! I went to the Farmer's market and got some corn”. I will have to say all I didn't do anything just hung out. This is important. I did something I got up I got dressed for a bus to the farmers market and came back. Perhaps that's what it's all about being part of the flow of river people at the farmers market.

Like Really People Do…

Delet

Last night, Thursday night, quite frankly all day Thursday the day had been dreading for some time because of so much stuff we were thinking of doing. Friend of ours my wound care specialist Kevin got himself involved with a band, a rock 'n roll band. And last night they had their debut set a local bar called Liquid Joe's place and every gun before but often passed and was curious as to the layout. Dianne got to know Kevin couple years ago When I had or was experiencing some possibly serious decubitus Wounds on my butt. Kevin is a trained physical therapist who for one reason or another became a specialist wound care and I think He is one of the best specialists in the area. It a great deal of good by me and I sure won't support him. What is of interest is that in the time we knew him or have known Kevin is had a couple of spinal cord injuries himself one resulted in serious damage to his hand. So for Kevin to be playing guitar in a band is no small feat.

Thursday is the day I usually have my health care attendant over for the usual care and shower. Dianne really want to go to the debut of the Horse concert. So I made arrangements with the healthcare will and move my day of coverage from Thursday to Friday. It also happened Anakah had her volleyball game Thursday as well. I slept poorly the night before and I was quite tired All day and I was really kind of spooked on how I was going to deal with the day and the evening. However, we got through the volleyball game – games. Went home and rested a short while and actually got a second wind for the concert. Thank goodness Kevin sent for 8 PM any later would've been dead ducks.

We're pleased to see that we were not the oldest folks at the venue. It's hard to say how many of the people there were there to support Kevin from his professional side of the University Hospital there seem to be a lot of folks there to support him. The band was okay I think a little shaky in spots but I'm impressed that they put together and pulled off the event. They played for about an hour, mostly 80s music and there was even some folks dancing at the last Of this set. Reaction got home around 10:00 PM because of that actually. As little worried about how I would feel this morning since I wanted to an early workout and my brother would be here to give me a 6 AM but he came and I didn't work out and did pretty well it was a good evening and a good morning. I'm glad Dianne got me into really felt good being out among real people get after-hours living like real people do.

Really! It's About Time

You read right it is 9 September almost 2 weeks in the month and this is the first blog been able to produce. I'm just damn pathetic and I don't know if I'm going to get any better. I'm coming off off and almost two-week illness that has just really laid me low am totally surprised how devastated it made me to the point that I spent a whole weekend in bed and that really did not help that much or at least I do not think staying in bed did. Somehow along the line I went in and had some blood drawn and I was totally blown away by the results. The results indicated that I was anemic! Me anemic cannot believe it. Granted the last couple of weeks I have been bleeding a little bit pretty significant rectally and Dianne believes that might be the basis for my anemia whatever the case is I seem to have something significant. I finally was trying to push myself into getting back to how I was – – because I was literally too tired to go into Wellness – – and I went wellness on Friday, last and Alex sent me home indicating that I was too weak and I've indicated I was also dizzy. I'm sort of glad for that but still worries me. About a month ago I was in have blood drawn for a full workout in my hematocrit's came back A-OK so I don't know what is happened from that point to the point where it showed I was way low on my hematocrit and anemic. I can't believe it was just the rectum bleeding. It's kind of spooky though.

With the extra time however, I was able to work on letters and have the girls done and will have to get them out the next day or so. We've had an issue with the printer not being able to locate our computers or vice versa but now Dianne has got us back online and printing will be much better and more efficient. It still challenge to print with the printer in the old computer room I am thinking Of moving my laptop into the computer room so I'll be right there to do the printing and I need to have done i.e. printing envelopes for the mail. I think having my computer and the old computer room is better anyway not only from the standpoint of free enough space in the bedroom but also moving my computer out of the bedroom where I sleep and kind of relax and into the computer room where it will be functioning as a working piece of equipment for that room – – I know this is convoluted thinking about that sort of makes sense that whole Asian kind of thinking – – you know what I mean. I'm getting kind of excited about overtone and trying to figure out how best to use it. Once again if they don't let you work out at Wellness or wherever I can always work out home in the guess is my end goal. Again however I was glad to get back to the gym this morning and see some of the old guys. I really do think I need to socialization that Wellness tends to bring me. Interesting. I hate to be so predictable.

I really do have something to write I just need to figure out a time and space to do it on a regular basis. Hopefully something more creative the next day or Soon.