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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ADHD or AD/HD (Attention-Deficit Hyperactivity Disorder) didn’t exist while my brother, Bob, and I were growing up — A very good thing for my brother!  Our mother never was sure where Bob was or what he was doing.

Children were known to be more active than adults… running all over the place wasn’t unusual.  Kids do something for a while and then do something else — Changing from one activity to another was acceptable.  And, it wasn’t called a disorder — It was NORMAL!

Looking at human history, it appears to me that if an adult wanted to change the behavior of a young person, it is possible to teach by example.  Take the individual for a quiet walk in the woods, or a meadow, while trying not to disturb the animals and birds you encounter — Seems to have been a productive technique used by generations of hunters.

Or, you could do what I’ve done from youth to senior-citizen age — sit calmly while observing the various insects moving on the sidewalk or in the grass around me.  If you were to try it, you just might be amazed at the effort expended by an ant trying to move something it wants from one place to another.

Maybe ADHD did exist — but we needed the drug manufacturers to help us identify it!

During the 1960s, the pharmaceutical companies began promoting a drug (Methylphenidate, widely known as Ritalin) to reduce “hyperactivity” in children and increase their attention span!  The FDA (Food and Drug Administration) approved the use of the drug on children — which appealed to some school teachers, parents, and other adults who had to spend time in proximity of children.

Moving forward in time we see one result: Sales of drugs to treat ADHD since 2000 have nearly quadrupled — to more than $3.1 billion a year built on the back of what appears to the Alternative Healthcare practitioners to be a questionable disorder.

And make no mistake about it. These drugs are far from benign. They are stimulants whose effects on your kid’s brain are similar to cocaine. Potential side effects range from tics to psychosis to addiction. So anything that can get kids off of them should be given some real attention.  Just don’t expect help from the FDA or conventional drug-prescribing doctors!

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!

My first wife and I were married in January 1967 (I’ll refer to her as Katy) —  we were both 19 years old.  Today is Katy’s birthday, and I dedicate this post to her memory. While she is not the first girl I remember falling in love with (that distinction goes to Joanne MacNett, who I knew before I started school),  Katy is the second girl I remember falling for.  And, Katy was a force that influenced me during more than half my life!

When I told my parents of my engagement to Katy they were somewhat surprised– perhaps because Katy and I had been “on-again off-again sweethearts” since about 5th grade. Or, perhaps because while attending school in Virginia the last half of 1965 I had informed my parents, during Christmas break, of my plans to marry a girl there.  But, that relationship was short-lived and ended before Spring came!

I met Katy while attending a school for the handicapped in Wilmington, Delaware

I entered John G. Leach School in 3rd grade — when it was felt I should no longer attend the local public schools.  It was typical, at the time, for the disabled to be accumulated from many different districts and segregated into a single school based on their handicap.   Although riding on a common bus, the blind were taken to one school; the deaf to a different school; those considered retarded went to a 3rd school; and, the rest of us went to a 4th specialized school. My school bus picked me up first each morning and dropped me off last.  Even though I only lived about 15 miles from the school, I was on the bus about 1 hour and 30 minutes each way — we had to pick-up and drop-off students with other handicaps at their schools!

The school was in a 3-story building with a very small elevator. I don’t know what the building’s original purpose had been. The area between the building and the wrought-iron fence around it was all asphalt — which worked fine for us crippled kids!

Katy had attended Catholic schools until starting Leach in 4th grade.  The first time I remember seeing her was at recess — we had different teachers, but we went outside together. Katy used crutches and had leg braces from her shoes to just below her knees. I found her bright smiling face appealing — I was attracted to her from that moment on!

My wife-to-be had been born prematurely, and perhaps with a damaged spine — Katy’s mother had fallen down some stairs only a few days before giving birth.  (I came to learn that Katy had undergone spinal surgery during the year before starting at Leach.)  Weighing less than two pounds at birth, the doctors weren’t sure she would live very long — Katy was 57 years 7 months old when she died of complications several days after the surgical removal of one of her kidneys.

Katy never did grow taller than 4 foot 1 inches. Although, she might have been 4 to 5 inches taller if her spine hadn’t been so severely twisted — medical diagnosis is kyphoscoliosis (her spine was arched/bent front to back and side to side).  But, within a few years of our meeting, Katy had gotten rid of the braces and started using a cane, instead of crutches. Katy weighed around 65 pounds when we were wed — some people said she looked like a porcelain doll in her wedding gown.

Exciting News!

When we learned that Katy was pregnant we were very excited!  Also, somewhat apprehensive — we were still living in our little bungalow next to the stable (for more on that experience follow this link) and hadn’t been able to save much money.  Katy was our only source of income for almost a full year — working as a secretary for a small industrial company in Wilmington.  I had only returned to steady employment about a month before we got the news of Katy’s pregnancy.  And, we had just bought a new car — the old one had become unreliable.  The timing seemed not to have been the best.  However, none of that mattered much.  We were going to be parents and would do the best we could, with what we had available!

One curious thing, unexpected by me, occurred as Katy began to show her state of pregnancy — word began to reach us that some of the older women in the community were wondering how Katy had gotten pregnant.  They speculated that because I was in a wheelchair I “couldn’t be the father!” Perhaps they went to their graves wondering about it — one of many incorrect perceptions regarding those of us with physical handicaps.

Katy’s due date was set for mid-February — her doctor had told us that delivery would be by C-section (cesarean section) because she was so small. As the delivery date came closer we had to make some changes:

  • Katy had to quit her job about 6 weeks before her due date — her office was up a flight of stairs;
  • We needed to return to living with my parents about 4 weeks before delivery because we had no phone in our bungalow — it was in Maryland.

After working the night shift at the U of D, I had gone to sleep around 8am — when I awoke, mid-afternoon, Katy told me she felt some contractions.  After a quick call to the Doctor, the expectant parents and both of our mothers were soon in a car traveling to Wilmington.  I had received instructions not to rush — to take my time.  Which is what I did.  But, the soon-to-be-grandmothers became anxious and started asking why I was taking so long to reach the doctor’s office!

Having been told to stay in the car, I waited for the women to return with their next set of instructions for the father-to-be.  😎  Soon, the four of us were traveling together again.  This time we were going to the hospital — about 10 blocks away.

It wont be long now!

I dropped the trio at the Maternity Entrance and began looking for a parking space. I needed a level space that was open on the driver’s side — otherwise, I would not be able to get out of my car without help.  Eventually, I found a suitable space and pulled by manual wheelchair from behind the driver’s seat.  Using a homemade wooden transfer board, I slid into the wheelchair and pushed myself back to Maternity.  My mother was standing outside the entrance looking for me when I got there.

Katy had been taken to an examination room so I got a nurse to take me to her.  Everything was going well and she was being prepped for the c-section.  After an hour, or so, we were told that the doctor was in the operating room and Katy was taken to him.

I joined the rest of the people hanging-0ut in the waiting room.  My mom, Katy’s mom, lots of people waiting for other women to give birth and perhaps others waiting for Katy — I no longer remember after that time of chaos and jubilation 41 years ago.

Our message came shortly after 8pm — Katy had delivered a healthy baby girl.  The new grandmothers and I were taken to recovery to see Katy and our child!  That is a once in a lifetime experience for me.

Despite the ups and downs of our twenty-year marriage, and ultimate divorce, I will always remain grateful to Katy for sharing it with me!  And, for her role in bringing forth our daughter.  😎

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!