Living with a Handicap


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!  😎

A long time ago, I read that new science/technology brings with it a set of problems which can only be solved by new advances.  You may need a while to digest it — But, I’ve found  it to be valid.

As a wheelchair user for more than 50yrs, I have been dependent on technology for some rather basic functions most of my life.  And, as I’ve aged  my strength/health have changed — I now need more and more equipment to get through each day.  But, who among us isn’t relying on the many modern devices which most citizens of an industrialized nation take for granted?

Whether still in your teens or you are considered a ‘Senior Citizen’, what would you do without a computer or cellphone for several days?  Can you imagine how being without electricity for a week would reek havoc on you and those around you?

Even though I considered myself pretty prepared, I found out just how much I had overlooked during my recent computer crash.

I don’t often purchase extended warranties — I think the cost is generally a lot more than they are worth.  However, when I purchased a new $1100 desktop computer in September 2008 I decided to pay the fee to add 2 years to the manufacturer’s warranty.  It was a good thing that I did — the warranty extension probably saved me from spending at least $500!

It took more than 6 hours of in-my-home troubleshooting and parts swapping to get my machine to an operational state again — partly because the hard-drive replacement shipped to the technician before he started my job was a defective re-manufactured drive and not a new one as he expected!

Now begins the tedious reinstallation of software and data

The technician installed the hard-drive and operating system, but it’s up to me to attempt to recover whatever additional programs and data I had before the crash.  This is where I learned that I had several weak-links in my chain — and, one of those was me!

I had my current data on an outboard drive (a Clickfree automatic backup device) that seems pretty much intact — all 250 gigabytes of it.  The manufacture’s website says that no system or program files are stored on the backup.  However, as I review my files, there does appear to be a lot of program files, and maybe some system files, included with the data.  So, I’m cautiously working to understand what is the quickest and safest way to get back to were I had been on June 30th without messing-up what the tech has installed —  it is not looking easy…  or quick!  8-(

Many of the programs I had installed were downloads with no disc involved — some paid, some free.   So, I can eventually get most of the free programs back by searching the web and downloading again — the paid ones may require me to pay the fee again depending on what records I have or whether the company can find info regarding my original purchase.

Another area of weakness I discovered was in my use of web-browsers.  I use Firefox heavily and bookmark a lot of sites and use the TAG feature constantly.   But, I had never exported anything from Firefox, Chrome or Internet Explorer — YUCK!  All that is GONE now….

Live and Learn

It has been my goal to always learn something from the difficulties or disasters I experience.  By doing so, I hope to avoid making the same, or a similar, mistake more than once.  Which should save a lot of time and perhaps some money!

I’d like to hear about your personal experiences with computer crashes or whatever you’d like to share — any helpful hints would be appreciated (a comment-button is located at the top of each posting).  Your comments are always welcome and I read each one.

Well, the title might be applicable to me sometimes….  But, not explicitly so this time.

Something corrupted my Vista operating system and has kept me off-line since July 1st.  And, when I powered-up tonight I didn’t expect the browser to load — TV doesn’t satisfy my need so why not give it a try?    Even now it is highly unstable and I don’t expect to be online more than a short while until the warranty company has gotten their technician here next week!

Until then, enjoy yourselves.  😎

When I started using a wheelchair there were only two sizes — adult and juvenile.  They were not very durable — partly because of the  materials, but mostly due to design flaws.  I sometimes  had to have my wheelchair replaced yearly — even with frequent minor repairs.  And, in the worst year ever– I had 4 different wheelchairs during a 12-month span because of broken frame components.

A lot of things have changed since my youth:

  • Most sidewalks around here now have curb cuts.
  • There are parking spaces for the handicapped — although they are often used by lazy able-bodied people.
  • Wheelchairs are generally more durable — both manual and those which are battery-powered.
  • Wheelchairs can be built for special purposes — from small for a child to very-wide for the obese.  They can also be made for a specific type of athletic competition such as: basketball; rugby; track; and many other special needs.
  • People with handicaps now have legal rights to an education, employment, housing and many other things which non-handicapped people have — although, you may still have to go to court to get them!

Sometimes I am amazed at all the programs and support available for those with moderate, or even slight, impairments today.  It is a good time to have a disability, I guess!

However….

I do not agree that alcoholics and drug abusers should qualify for coverage by the Americans with Disabilities Act — but, they do!

When I hear about people misusing public programs or funding I become enraged.  I want to lock them in a cell somewhere — 1 week for every $100 they stole from us taxpayers!  Politicians would also have to be careful about how they behaved — they would not be exempt from the penalty!

I’ll end here… before I get my blood pressure into a critical range.

Have a wonderful 4th of July Holiday!  And, remember those who have made our liberties available to us.

God Bless America, please!

During my childhood and youth the term crippled was often applied to people with a handicap or disability —  The Shriner’s Hospital for Crippled Children is just one example I can still recall.  Of course, names were changed over time to reflect the latest politically-correct terminology.

There weren’t many opportunities for children with handicaps to participate in activities that were similar to their able-bodied peer group — summer camps were part of the experience disabled kids were largely prevented from enjoying.  However, I was lucky enough to be in a good place as some of that was beginning to change.

From the summer of 1954 through the summer of ’65 I attended Camp Fairlee Manor — located just a short distance outside the small town of Fairlee, Maryland, near Chestertown.  The summer camp was operated for handicapped children living in Delaware and parts of Maryland by the local Easter Seals office. I believe that I started with one of the earliest years this camp was running — perhaps in its 2nd year!

Each camping session began on a Sunday afternoon and ended almost two weeks later on Friday morning — after breakfast.  The sessions took place from mid-June through mid-August when schools and colleges were not generally operating — most of Camp Fairlee’s counselors were college students.

The landowner's residence appears after recent restoration work.

From the outset, the campers and staff lived in the Manor House — what had originally been a residence built for the land owner sometime in the 1800s.

There was no swimming pool so each day we rode in the back of a large stake-bodied farm truck in order to go swimming —  perhaps 10 to 12 campers and about half as many counselors.  Our trip was maybe 10 to 15 miles and the truck had straw in the back for us to sit or lay upon.

I could still walk, with difficulty, and remember we had to use a very long wooden-staircase attached to the face of what was perhaps a 25 foot cliff in order to reach the waters of the Chesapeake Bay.  A difficult climb down and worst going up!  Frequently, I was carried up the stairs by a male counselor.

Within a few years two basic summer dormitories were built — no insulation or air conditioning.  One dorm housed the boys and a smaller one was for the girls.  The number of campers per session expanded to about 30 or 40.  The number of counselors also grew — so that none would have more than 2 campers each.

Two pools had been added around the time the dorms were built:

  • One was a large wading pool — water depth of a foot and a half or two;
  • The other was a swimming pool with a diving board.

Campers had to start in the wading pool until they could prove they could float and wouldn’t be in danger in the bigger pool — most never moved out of the wading pool.

As a teen I looked for things I could do that my peers couldn’t or wouldn’t.

From the time I was approved for the swimming pool I began pushing my limits.  I could slide off the wheelchair seat onto the diving board.  Then I’d wiggle out on the board and fall off the end.  I made a good sized splash when I struck the water — which was perhaps 3 feet below the board.  Although I enjoyed making my big splash, it was something I could only do once each day — no one was gonna get me out of the pool just to let me fall back in!

I had already been holding my breath underwater in the wading pool — floating with my face down.  Being in the deeper pool soon inspired me to try getting below the surface as far as I could.  But, I couldn’t swim hard enough to get very deep — I kept bobbing-up like a float on a fishing line.

There was a ladder on the deep end which extended to a depth of about 4 feet.  I began climbing-down the ladder so I could get deeper under the water.  That worked as long as I held on — but as soon as I let go I floated back to the surface.

Before long I began asking the counselors to watch me and to time me.  I don’t recall whether it was during my first year in the swimming pool or the second, but I became able to stay underwater for longer than a minute and a half.

After my success, I spoke often about my breath-holding skill/capacity.  I’d practice breathing deeply and holding my breath whether I was at summer camp or not.  And, none of my able-bodied friends could do it as long as I.  😎

In time, I learned that I could hyper-ventilate (take multiple deep breaths in rapid succession until I was feeling a little light-headed) — then I could exhale and climb down the ladder more easily.  Once I reached the bottom of the ladder I could push-off toward the center of the pool and stick my fingers into the drain-grate — holding it to prevent my floating back to the surface.  Although I don’t remember the year, I can remember the following quite well:

I had asked one of the counselors to time me while I held onto the grate.  I was calmly watching the other swimmers from my place on the bottom of the pool when someone jumped in and began tugging on my arm — he was looking at my face and pointing upward.  When we reached the surface he started asking me if I was alright.  I said I was.  Then I noticed a crowd had gathered around the pool looking at me.

Turned-out that the counselor thought I had become stuck in the grate because I was there such a long time — longer than 2 minutes and 15 seconds.  I was told, “never do that again!”

Even though I got a scratch on my face while being rescued, I was quite proud of holding my breath that long underwater. 😎

The incident did kinda change my somewhat-risky behavior during my time at camp — I even won the Outstanding Camper Award during one of my sessions.  However, it didn’t seem to influence my behavior back home…  I’ll write about that in future postings.

In the years since I graduated from high school, Camp Fairlee Manor began having at least one session for adults each summer.  But, my life had become to involved with work and family in the meantime so I never took advantage of the opportunity.

Nowadays, Easter Seals Delaware and Maryland’s Eastern Shore offers so much more at Fairlee Manor than they used to — excerpts from their website describes it this way:

Fairlee Manor Recreation and Education Center is a beautiful, residential/recreational and respite camp on 250 sprawling acres on Fairlee Creek which offers campers from age 6 and up the opportunity to experience the joys and challenges of camp in a fully-accessible setting.”

“Fairlee Manor’s residential camp generally serves an average of 50 to 75 children and adults each week with physical disabilities and/or cognitive impairments throughout the summer and on select weekends year-round.”

“The respite camp at Fairlee Manor serves children and adults with the most involved physical, emotional, cognitive and behavioral disabilities, including some medically-fragile individuals. The number of campers are fewer than those that attend the residential camp in order to meet extensive personal needs. The respite program operates on weekends on a year-round basis.”

Fairlee Manor also offers conference and meeting space for rent.  Cabins can also be rented on select weekends.  Quite a big difference from my days at summer camp!

Thanks for stopping-by and reading my ramblings.  The links will allow you to explore more of what Fairlee Manor has available and other programs offered by Easter Seals Delaware and Maryland’s Eastern Shore.

I wrote a posting in January, entitled Pain in the Butt,  and described some of my earlier experiences with manual and electric wheelchairs.  I also commented on my newer pain experiences and how I hoped that a technology I was unfamiliar with (pressure mapping) might help me.

Well, after many failed attempts to get a prescription via my family-practice Nurse Practitioner, I was able to get the required document from my heart doc and scheduled the pressure testing.

Yesterday was the Big Day!

The pressure mapping was a little “unnerving” to me, because I needed to be lifted off my wheelchair so that the technician could place the sensor mat under my bottom.  My anxiety level was rising as the sling was being positioned for the lifting.  You see, since my release from the hospital in June 2004, my wife lifts me a minimum twice a day — once getting me out of bed and once getting me into the bed.  Occasionally its more than once each way per day.  So, to say that I have experience with the sensation and positional relationship of the sling would be an understatement.  And, I have had bad experiences in the past.

When I raised my concern with the staff that my body was being shifted and spun while the sling was being tugged/pulled into position and that I felt the sling was not what I had hoped for, I sensed a bit of hostility — and a feeling they felt questioning their skill or experience was offensive to them.

After I stated my case in a long and detailed manner

An attempt was made to find a sling of a slightly different design and assigned to the new person in the department.  Following a period of uneventful waiting, the young man who had been positioning the sling and I began working with what we had at hand.

Eventually, through our joint team work, the sling was in a more acceptable place and I was prepared to make an attempt.  However, it needed to be stopped before the pressure mat was positioned — I felt as if I was slipping out of the sling and my slacks were sliding-off.

After being return to my wheelchair and the sling underwent another readjustment, to a position more beneath my hips, we finally had a successful lift-off!  The mat was positioned upon my old wheelchair cushion, I was lowered upon it, and the pressure mapping was performed.

I was shown a display which looked a lot like the thermal imaging you may have seen which shows heat or cooling loss from a building — reds, yellows and greens.  As the technician explained what I was looking at, I was not surprised where she indicated the worst pressure points were located — I feel them pretty much constantly.

The next step got me excited about the likelihood of future pain relief

A number of different seat cushions had been placed on a physical-therapy table and the tech asked me if I’d like to try any of the different types — I was going to sample some seat cushions before they were purchased…  Woo hoo!  In my 50+ years as a wheelchair user, I have never been given the opportunity to sit on any seat cushions prior to owning them.

  • First one which I sampled was air-filled — it had a series of bladders (for want of a better term) a little larger than a man’s thumb covering the whole of the seat cushion.  It felt a little bit unstable to me — even after some of the air was removed.  But, the pressure points on my behind were experiencing some new found comfort.
  • Next came a gel cushion — it had two sections which were  placed side-by-side, so that each hip would have its own gel cushioning.  After the seat cushion was placed in my wheelchair the pressure mat was laid on and I was deposited on top.  Mapping results were clearly different than when I was on my original seat cushion — a lot smaller area of red.  And, I was surprised at how pleasant the gel seat cushion felt.
  • Lastly, another gel seat cushion.  This one had a large gel cushion section in a “reservoir” as the tech described it.  After everything was in place, mapping and I were both in agreement — this was the best gel cushion for me.  And, a huge improvement over any prior seat cushions I have ever used!

While all this activity was occurring

I noticed there appeared to be a weight gauge on the lift, which I asked about.  Soon I was weighed and the result was 63.3 kilograms.  Since I have not become a metric user they converted it for me — 139.552 pounds.  So,  I will be 140 when anyone asks how much my bony-self weighs.  😎

Every wheelchair user will have a slightly different posture and feel comfortable according to their own needs.  One thing to keep in mind, however — without a sense of feeling below waist level, the pressure points experienced while on their seat cushions are more likely to produce pressure sores, known as decubiti.  If the sore is not cared for and the pressure points not addressed, a serious health threat exists.  I’ve known paraplegic wheelchair users who developed an infection of a bone due to inadequately cared for pressure sores.

So, I’ve been fortunate in my life.  Even while I have been dealing with more pain in the last couple of years, my sense of feeling has saved me from a significant danger experienced by many wheelchair users — an infected open-wound.

Those of you reading this blog who have family members using a wheelchair — please look after their best interest and see that they have seat cushions which protect them from shearing in the area of the bony pressure points.

Live long and prosper.

Growing-up soon after the end of World War II, medical science had not reached the point where doctors were recommending abortion except in cases of extreme danger to the mother.  In fact, some States had laws against abortion.

In 1973, the United States Supreme Court ruled on a case (Roe v Wade) which granted abortion rights within a set of circumstances — basically a woman’s right to an abortion is determined by her current trimester of pregnancy.

My feeling is that abortion is now used extensively to undo a laxity in the use of abstinence or birth control pills and other forms of preventing pregnancy — abortion is an after-thought brought about by poor planning!  Which appears to have been a significant reason for the “morning-after pill.”

Abortion is also being used to terminate the life of children viewed as “imperfect” by the mother!  Our modern medical science and our society have come to believe that they are capable of determining the “Value of a Human Life” — even further, they believe that they have a right to abort that life!  Apparently, the fetus has no right to life?  Therein, comes the rub — the debate and conflict continues.

Today I came across an Associated Press news item issued last Monday titled, “Doctor’s license revoked after botched abortion” which demonstrates clearly that abortions are occurring on the “deformed” (click here to read the AP news item) .   In 2006, the doctor was attempting to abort a twin with Down syndrome and a heart-defect — but he aborted the healthy twin instead.  The doctor has since stated that he could not tell a patient “no”… a pathetic comment indeed.

There is no requirement to report legal abortions… so the numbers are not reliable.  But, the most recent numbers indicate more than 800 thousand legal abortions were performed in the US.

The National Down Syndrome Society (NDSS) website says that approximately 400 thousand Americans are living with Down syndrome.  NDSS is pursuing a campaign of inclusion… they advocate that individuals with this handicap (my word) are capable of having a life of success and accomplishment!  I’ve known several individuals with Down syndrome who functioned quite well — and, they were well loved by their families.

Life is a challenge.  It always has been and likely always will be!  It requires effort. My parents demonstrated that to me — they worked hard for their children and each other.  I’m grateful they taught me that I could succeed in many areas of my life even though I had physical limitations which prevented me from walking or lifting heavy objects — but, I had to work at it!

So, where is our society headed now?  Illegal drugs and abuse of alcohol or prescription drugs  bring tremendous pain and cost to us all.  The violence that travels with drugs/alcohol is making some communities extremely hazardous.   And, none of us are immune from the effects on the fabric of our Nation.

I strongly believe this — when life becomes cheap and meaningless, yours wont be worth a dime either!

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