Friday, July 23, 2010, from 10:00 a.m. to 12:30 p.m. (Eastern Daylight Time) there will be a live webcast from The Great Hall in the United States Department of Justice’s Robert F. Kennedy Building.

After 20 years, there are still many areas within our society which have barely been impacted by the ADA.  Handicapped (or disabled if that is your preferred term) persons must file grievances, complaints, and lawsuits to receive what they are entitled to in accord with the Americans with Disabilities Act — the law makes it necessary for those of us being discriminated against to take some action against the violator!  So, why wouldn’t they wait — architectural barriers are still standing because a person who would’ve enjoyed access decided it was not in their nature to complain or become a problem.

I’ll celebrate what has taken place — and, I’ll look forward to much more changing for the better!

Follow this link 15 minutes prior to the scheduled time in-order to view the celebration live.  The link will also provide access to the recorded event afterward.

I’d like to hear about your thoughts, feelings or experiences — a comment-button is located at the top of each posting.

Enjoy the weekend!  😎

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The Paralympic Winter Games in Vancouver will take place March 12th through the 21st.

A Summer Paralympics was held at Rome in 1960.  Winter Paralympics didn’t start until 1976 at Örnsköldsvik, Sweden.  Since 1976, both a Summer and Winter Paralympics have occurred  about 2 weeks after the regular Summer & Winter Olympics — which gives the host city time to prepare for all the athletes with handicaps/disabilities!

Five sports are on this Winter’s Games program: Alpine Skiing, Cross-Country Skiing, Nordic Skiing, Sledge Hockey, and Wheelchair curling.

Those of you interested in watching some of the competition this year can find it at paralympicsport.tv via the internet.  And, if you’re eager to see some handicapped athletes competing prior to the Paralympics just click the link and watch one of the videos in their archives!

Another site of interest is the official US Paralympic website.  They offer photos and video of recent and past events — also articles and interviews of US athletes.

These sites may open your eyes to new possibilities for yourself or someone you know!  And, who knows, maybe some year you’ll see the gimps competing on TV during the Olympic broadcasts.

Enjoy…  😎

And, please tell me what you think about this kinda stuff!

In 2004, after having been moved out of the Intensive Care Unit (ICU), I became aware of a very unpleasant situation —  My ability to communicate was extremely limited due to a tracheotomy (as described in a previous posting,  Hospitalization – 2004);  And, I was under the control of people who were not my friends or my family.

Newly aware of where I had been and what was happening, a dilemma soon presented itself!

Hospital policy stated that I was to be turned every 2 hours — 2hrs on my left side, 2hrs on my back and then 2hrs on my right side.  (Despite this policy having been in effect, I now had a pressure-sore on the back of my left buttock which I received while in the ICU.)  If I was turned as proscribed I would soon be laying on the sore — which is what quickly happened!

As I was turned, the pain was immediate. I shook my head and gestured to the staff not to leave me in that position — No matter, I was left with my bandaged sore pressing upon the mattress. As the staff exited my room, I was told that someone would return in 2 hours to turn me again. Then, the ceiling light was turned-off.

I was feeling very alone in my darkened hospital room. However, I did have two companions:

  • The incessant, never-ending, sound of the breathing machine pumping oxygen into my lungs via the hose attached to my throat;
  • And, the pain coming from the only pressure-sore I’ve ever had in my life!

After attempting  to “tough-it-out” the pain became intolerable — I pushed the call-button which had been clipped to my hospital gown, hoping to summon someone to help me.

Eventually, a voice came from the speaker on the wall above my headboard, “can I help you?” I had no way to respond to the voice — I couldn’t speak!

The voice asked another question, “do you need something?”  Surely, I thought, the staff at the nurse’s station must know I can’t talk! I remember feeling desperation and panic as the sound from the speaker went silent.

It seemed like a long time, but a nurse eventually entered my room to check on me — I frantically motioned to be turned. She said that she was going to get some help and returned with an assistant. I managed to get them to roll me onto my right-side — the side I have always preferred to sleep on, and was away from the sore! The nurse reminded me I would be turned again in 2 hours.

The next time I was turned didn’t start to badly, except for my short panic when they began — how was I to deal with the upcoming pain I expected? Attempts to stop them from changing my position seemed pointless! Then, a small glimmer of hope entered my consciousness — somehow, they managed to avoid placing me on the sore.

What a relief, I thought — But, it was temporary!

The positioning I was in slowly shifted until I was again feeling severe pain.  This time, however, when I pushed the call-button three women entered my room and they did not turn-on the ceiling lights — I could vaguely make-0ut their appearance in the light coming from indirect and medical equipment sources. One of the women asked what I wanted and I gestured to be turned. Then, the one assuming authority walked toward me and said, “you were turned less than an hour ago.  You will not be turned again until it’s time!”

I resumed my pleading gestures to be turned. But, the Alpha-female would have none of it — “If you push that button again, it will be taken from you!” She turned around and left my room, with her companions close behind. The shock of what had happened began to sweep over me!  Tears soon dampened my face.

Difficult situations were very familiar to me before this incident:

  • at least four times, brakes have failed on cars/vans while I was driving;
  • other types of vehicle brake-downs have occurred while I was driving;
  • wheelchairs have broken while I was in them;
  • people bigger and stronger than I have threatened me;
  • some have beaten on me;
  • and, some have taken things from me.

Why has this particular incident changed me so dramatically that I still feel its effects — more than 5 years later?

I had an absolute and complete feeling of powerlessness!

  • I could not speak or even scribble intelligibly —  left to using gestures, I felt my communications had declined to the  equivalent of what was available before I uttered my first multi-word phrase as a child;
  • And, I could not escape my abusers — at least not until shift change, which I had no idea how long that would take.

Following my release from the hospital, almost two months after being threatened by the “night-shift terror-crew”, I came to believe I was experiencing PTSD (Post-Traumatic Stress Disorder).  I feel better today — but I’m aware the effects still linger.  Whenever my wife leaves our apartment I find myself worrying about when, or if, she’ll return.  And, whether she’ll remain healthy enough to provide the daily care I need.  Those are feelings I never had prior to 2004.

I don’t think I’m alone with my anxiety — I believe that a large percentage of people with physical handicaps or age-related limitations worry about what their life will be like tomorrow or the day after that!

How many of us want to finish our lives in an INSTITUTION or in the hands of someone we don’t know?  How about YOU — how do you feel?

Please leave a comment (the button can be found at the top of this posting) — I welcome, and read, each one.

I completed the below poem on January 19, 1994. It is based on events which took place during a conference, “A Gathering of Artists”, which was held on the University of Delaware campus during the fall of 1993. The conference was focused on bringing together a broad-diversity of artists, whether visual, creative or performing — Basically, anyone you’d call an artist was invited to attend 2-days of workshops, forums and discussions. There was a modest fee of $25, as I recall.

As a founding-member and representative of AbleArts, a troupe of performing members with and without handicaps, I was very excited to exchange information & knowledge with other local artists. And, although I had confronted narrow-minded people throughout my life, I was completely caught off-guard by the words, and attitude, of Ms. E. Jean Lanyon during the conference.

Following the conference, I shared my upset with other members of AbleArts — Some of them suggested I should write a letter-to-the-Editor, which I never did. However, in January we had a snow storm (storms seem to kick me into action) which left me stranded in my apartment for several days. It was during my snow-bound state that I created the poem:
_____________________________________________________________________

It was at “A Gathering of Artists” that we first met.
As she proclaimed herself “Delaware’s Poet Laureate”.

In both large and small groups that day
She took the opportunity to say what she had to say.

I reckoned that one who exhibited such power
Could be a valuable ally at some needful hour.

So, I told her I was a closeted-poet, kind of.
And, that others, like myself, created poetry for love

That we must recite in our own homes, while at night
Able-bodied poets gather in non-wheelchair-accessible reading sites.

(Ten years now, budding poets have read at O’Friels;
Upstairs, 2nd floor — Not in chairs with 4-wheels!)

Vehemently, she protested thus (Delaware’s Poet Laureate),
“Reading space is scarce.  We’ve got to take what we get”.

“We can’t possibly be expected to accommodate all!
There are so many constituencies; yours is to small.”

“I don’t think you heard me, or understood”, I objected.
“My request is consideration when future sites are selected.”

“If mobility-impaired”, I asked her, “how would you participate?
Unable to climb stairs, shall someone carry the ‘Poet Laureate’?”

“I’m not important.  It doesn’t matter about me.
The work must continue, it’s got to be!”

“I wont argue”, she said.  And, then turned away.
“It’s not possible”, I thought, “what I’d just heard her say.

How could a poet, who should be sensitive and feeling,
Defend anyone’s exclusion?”  My mind was just reeling.

In stunned disbelief, transfixed where I sat,
I viewed the departure of Delaware’s Great Laureate.
___________________________________________________________________

Former Poet Laureate (I have subsequently learned that her official title ended in 1981) E. Jean Lanyon and I almost met on the campus of Delaware State College several years after our U of D confrontation — Del State was scheduled to hold a day of poetry near the end of the Spring Semester and we had both been invited.  In fact, Lanyon was to be the keynote speaker. Perhaps fortunate for her, the event was canceled before it took place and I got the opportunity to read in front of her!

I know the poem is a much greater retribution than a letter would have been. Even though I haven’t read A Gathering of Artists in public since my 2004 hospitalization, I have given more than 35 public-readings during my appearances with AbleArts; and at least 10 public-readings without AbleArts! I can’t begin to count the many other times I’ve read for friends and family.

Now, I place my poetic work into cyberspace — to be read by hundreds of thousands of people… How absolutely amazing! 😎 (more…)

In late February 2004, I entered the hospital emergency room with a severe abdominal pain.  After sitting in the waiting room for almost 2 hours, I grabbed a male in scrubs and told him I was in severe pain — virtually demanding something for the pain!  He lead my wife and I to a different area and said he would be right back.

Soon, I was told by a nurse to “get up on the gurney.”  And, when I told her I couldn’t do that, she adamantly repeated her instruction.   My wife explained that I was physically unable to stand, or climb onto the gurney.  Next thing I knew, someone gave me a shot of Dilaudid and I lost consciousness soon after — Following x-rays, it was learned that I had a growth around my appendix and intestines.  Surgery removed the non-malignant growth and 8 inches of bowel.  During recovery, I rapidly developed MRSA Pneumonia (one of those nasty drug-resistant staph infections that you get in a hospital and frequently kill.)

What Happened Next?

  • 6 weeks in ICU (an Intensive Care Unit, which I have virtually no memory of.)
  • Medical ventilator (a breathing machine to assist my severely impaired lungs.)
  • Tracheotomy (installation of a plastic tube through the skin into my airway, just below my voice box, to connect me to the ventilator)
  • A PEG tube – percutaneous endoscopic gastrostomy tube (feeding tube stuck through the abdominal wall into my stomach and attached to a bag of liquid “food“.)
  • plenty of super-duty antibiotics (along with prayers from my family and friends.)

After I got out of ICU, and off whatever drugs they had used to keep me in a semi-coma,  I slowly became aware of what was happening around me:

  • I could not speak — the trach had an inflatable bulb which blocked air from passing over my vocal cords while the ventilator was forcing air into my lungs;
  • I was to weak to write an intelligible note — which meant the only communication methods available to me were attempting to finger spell or use hand/body/facial gestures;
  • A feeding tube was sticking out of my belly — and I was not allowed anything by mouth;
  • I had received my first ever pressure sore (on my left buttock near my tail bone) while unconscious in ICU — the sore caused me a great deal of pain whenever I was rolled onto it (my position was supposed to be changed every 2 hours);
  • I was confined to my bed for what lasted more than 2 months — I really didn’t have the energy, desire or breath to leave the bed anyway;
  • I remained hospitalized for 3 1/2 months!

Even after I was finally gotten out of bed, I still needed to be attached to the ventilator — my lungs had been damaged and I gasped for breath anytime the hoses became disconnected.  In time, I was able to remain out of bed for an hour or two — eventually I could do it without the vent.  But, I still needed the mechanical ventilator when laying down!  And, I was taught how to speak by capping the vent tube with a finger so that the air in my lungs could be forced over my vocal cords.

One consequence of my extended hospital stay is a significant decline in strength and range-of-motion.  And, Muscular Dystrophy doesn’t permit much in the way of recovery of strength. However, the staff did manage to give me a few days of PT/OT (physical and occupational therapy) shortly before my discharge.  And, I was also permitted some jello (after a video x-ray to evaluate my performance) and pudding during my last week, or so, of incarceration —  I had to re-learn how to swallow without choking, before I could go home!

I was very glad to finally return to my dear wife.  But, I hated that she now had to do so much for me — a great deal more than was needed prior to my surgery and pneumonia.  Initially, there were many times each night she had to get up and suction the mucus from my trach tube — Whenever the ventilator alarm signaled that I was having difficulty breathing.  The need to suction while I’m in bed is a rare event today, fortunately.

For at least the 1st month I was home, my wife had to find someone to stay with me whenever she needed to leave our apartment (to go to the drugstore or the grocery store).  I was very dependent and could not be left alone — I needed a babysitter, and they had to be willing to be trained in the technique of suctioning the trach tube!

Eventually,  I regained most of my pre-surgery independence

I have never regained the strength I had before the surgery:  a hydraulic patient-lift must be used by my wife to remove me from my hospital bed each day — and to return me to the bed at night.  I’m unable to change my positioning in bed or wheelchair — my wife must do that for me.

I can do the suctioning myself, without assistance, as long as I’m in my wheelchair.  The feeding tube was never used at home and was removed about 4 weeks after I came home.  But, I still have the trach and I’m attached to the vent whenever I lay down — lungs are permanently weakened.  I can speak, with some difficulty — loudly enough to be heard, but not in noisy environments.

Items I use from the refrigerator are positioned for my easy reach — provided they are not to heavy or difficult to handle.  We have a separate upright freezer with microwaveable items within my reach, in case my wife is not around when I get hungry.  And, as a final coverage for my short-term food/water needs — I have saltines and a jar of peanut butter always on the table and four 12 ounce bottles of water on the refrigerator door!

There have been lots of times when people would say the above title applies to ME! I can’t deny it — there are times when I AM a pain! No, that isn’t what I had in mind here. The title refers to the type of pain I am experiencing every day —  have been for more than just a year or two.

When I started using a wheelchair, about age 10, I had muscle-tone in my backside and thighs — The muscles were weak, but not unusable. I didn’t need any other cushion or padding during the 25 years or so that I rode around in manual wheelchairs.

However, when I got my first power-chair it came with a very comfortable foam cushion — it was a wonderful change for my shoulders, and my bottom, when I became an electrically-powered-wheelchair user.  You see, all those years sitting and pushing, dangling my legs, had taken quite a toll on my shoulders and buttocks.

Over the course of my life, I became aware that I had great sensitivity and feeling throughout my body — like in the story, “Princess & the Pea!” So much so,  I had begun brushing my bed before I got on the sheet each night — there always seemed to be grit or sand that I could feel against my skin unless I brushed it off the sheet. I guess I got over that — or the new places where I was living didn’t have as much gritty stuff to end up in my bed!  At some point, however, I did quit the nightly sheet-sweeping!

In February 2004, I had emergency abdominal surgery, due to a growth around my appendix and intestines — I remained hospitalized for 3 1/2 months.  (I plan to detail that experience in my next post.)   I was at 234 pounds shortly before discharge from the hospital.

Following my return home, I had some difficulty with my intestines which I addressed by cutting  my food intake.  Then, in the spring of 2007, I entered the hospital (not related to 2004) for 4 days — I weighed 160 pounds at that time. (Hospitals are the only places I’ve found to get weighed since I can’t stand.)  I had lost around 70 pounds in about 3 years — between hospitalizations.  Since my teen years, I had been called a hearty eater.  I was still eating pretty much what I wanted, but I just didn’t want as much as my old former-self did.

So, now my body doesn’t have the fat to provide the cushion between bone and muscle/skin — I hadn’t considered my weight loss might bring about a pain problem.  Perhaps it didn’t…  But, now I’m trying to eat more often.  The one thing I do know, however — my sense of feeling is a burden like never before.

I’ve recently learned of a facility nearby which can perform “pressure mapping” — I could sure use some of this 21st-century technology to help with the pain of  sitting or laying-down. Maybe I can find a new hi-tech, customized, drug-free, solution!

During my first 62 years, I’ve had plenty of adversity and challenges…  one of them being an expected life-span of less than 25 years. Most of the guys I knew with Muscular Dystrophy had died (5) earlier than that.

Seems I have defied the medical predictions — I’m still here and kicking! 😎

I hope you visit again.  You can sign-up for email or RSS notification of all new postings, if you think you might like to read future episodes of my blog.

And, please, leave a comment (the button can be found at the top of this posting) — I welcome each one.

I believe I first became aware of the song Talking Wheelchair Blues during this past summer — probably while running a search on wheelchairs and cushions.  I remember playing a link I found at the time — I seem to recall the singer was a woman, but I haven’t found her since.  I didn’t do anything else about it at the time, except I told my wife about the song.

Recently, a friend lost her father, following a lengthy illness.  My wife has been requesting my help in finding humorous, light-hearted, songs to play and leave as messages on the friend’s cellphone.  So, as I was digging around on Rhapsody, my wife remembered the Wheelchair song and asked me if I could find it.  Not only did I find the song on Rhapsody, I searched Google and found the lyrics, which I’m posting below.

I feel a close connection to events in this song — I recall times, from my personal experiences, when I had to use service entrances or service doors (as described in the song) in order to gain access to a building.  Even today, more than 15 years after the passage of the Americans with Disabilities Act (ADA), if you are in a wheelchair you may still have to travel through the kitchen, housekeeping or delivery areas to get into/out-of a specific building. I’ve also had many parents and waiters (waitresses also) react to me like those in the song.

Talking Wheelchair Blues by Fred Small — from his album, “The Heart Of The Appaloosa”:

I went for a jog in the city air
I met a woman in a wheelchair
I said “I’m sorry to see you’re handicapped.”
She says “What makes you think a thing like that?”

And she looks at me real steady
And she says, “You want to drag?”

So she starts to roll and I start to run
And she beat the pants off my aching buns
You know going uphill I’d hit my stride
But coming down she’d sail on by!

When I finally caught up with her
She says “Not bad for somebody able-bodied.
You know, with adequate care and supervision
You could be taught simple tasks.
So how about something to eat?”

I said, “that’d suit me fine,
We’re near a favorite place of mine.”
So we mosied on over there,
But the only way in was up a flight of stairs.

“Gee, I never noticed that,” says I.
“No problem,” the maitre d’ replies;
“There’s a service elevator around the back.”

So we made it upstairs on the elevator
With the garbage, flies, and last week’s potatoes.
I said “I’d like a table for my friend and me.”
He says “I’ll try to find one out of the way.”

Then he whispers, “Uh, is she gonna be sick,
I mean, pee on the floor or throw some kind of fit?”
I said “No, I don’t think so,
I think she once had polio.

But that was twenty years ago.
You see, the fact of the matter is,
If the truth be told,
She can’t walk.”

So he points to a table, she wheels her chair.
Some people look down and others stare.
And a mother grabs her little girl,
Says “Keep away, honey, that woman’s ill.”

We felt right welcome.

Then a fella walks up and starts to babble
About the devil and the holy bible;
Says “Woman, though marked with flesh’s sin —
Pray to Jesus, you’ll walk again!”

Then the waiter says “What can I get for you?”
I said “I’ll have your best imported brew.”
And he says “What about her?”
I say “Who?” He says “Her.”

“Oh, you mean my friend here.”
He says “Yeah.” I say “What about her?”
“Well, what does she want?”
“Well, why don’t you ask her?”
Then he apologizes.
Says he “never waited on a cripple before.”

We immediately nominated him for Secretary of the Interior.

Well, she talked to the manager when we were through.
She says “There’re some things you could do
To make it easier for folks in wheelchairs.”
He says “Oh, it’s not necessary.
Handicapped never come here anyway!”

Well, I said “goodnight” to my new-found friend.
I said, “I’m beginning to understand
A little bit of how it feels
To roll through life on a set of wheels.”

She says “Don’t feel sorry, don’t feel sad,
I take the good along with the bad.
I was arrested once at a protest demo
And the police had to let me go.

See, we were protesting the fact
That public buildings weren’t wheelchair accessible.
Turned out the jail was the same way.

Anyway, I look at it this way —
In fifty years you’ll be in worse shape than I am now.
See, we’re all the same, this human race.
Some of us are called disabled. And the rest–
Well, the rest of you are just temporarily able-bodied!”

Rhapsody music service offers a trial program which does not require any sign-up.  If you’d like to hear Fred’s song, clicking the link below should give you that opportunity!

Enjoy  😎

Talking Wheelchair Blues