Category: Fun

World’s First All-Accessible Water Park

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Image this:  A child who has never had the opportunity to be completely immersed in what would be considered a typical summer activity.  Why?  Because s/he is confined to a wheelchair or has autism or a brain injury.

I guess you don’t have to imagine it, do it?  With all the ADA-compliance modifications that have already been made – and they are wonderful, the world is still largely out of reach for anyone with special needs.

There have been times when I have cried because I was sidelined because of a physical barrier.  And, if I cried, I can only imagine how often a child has wept because s/he was relegated to an observer-only status.

Now, image this:  A child or adult with special needs has the opportunity to be completely immersed in a typical summer activity.  What a fantastic idea!

Well, we don’t have to use our imaginations anymore; someone has finally taken the barriers away:  Gordon Hartman, the creator of the world’s first ultra-accessible water park.  It is a fantastic idea, and it is a reality!

“Children and adults who have special needs are sometimes left out, not because they want to be but because sometimes things are not always adequate for them to use,” Hartman said.

Today is the opening day for Morgan’s Inspiration Island.  A $17 million tropical-themed water park located in San Antonio, Texas.  This astonishing park (check out the above link) merges those with and without disabilities into one experience. The greatest part of all is that it includes all special needs people.

There are waterproof wheelchairs that use compressed air instead of batteries (which the University of Pittsburgh helped develop); waterproof wristbands for those who tend to wander, quiet areas for those who get overwhelmed, and a way to quickly change water temperature for those who are sensitive to cold water.  There’s more:  fast passes for those who have trouble waiting in line, private wheelchair transfer areas, and the riverboat adventure attraction boats rise to meet passengers (instead of wheelchair ramps).

Admission?  FREE FOR THOSE WITH DISABILITIES.

Anyone up for a road trip to Texas?

 

 

 

The Gift

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Clunk. 

Laying the book down on her lap, she turned her head so that her good ear was aimed toward the sound.

Again, another clunk.  

Not knowing what else she could do, she waited with the still patience of a deer in the woods; her heart pounding as if it were the instrument of a mad drummer.

Then, her husband called out, “I’m home.  Where are you?”

“Upstairs,” she replied putting her hand to her chest.  “In the pink bedroom.  You’re home early.”

“Yeah, the meeting ended earlier and traffic was light.  I’ll be up in a minute.”

A smile played its own rhythm across her face as she swept her hand through her gray hair.  I’m glad he’s home early.

As the minutes passed, the sharp clank of dishes revealed the location of his delay.  As she was wondering what could he possibly be doing in the kitchen, he suddenly appeared in the doorway.  There he stood looking like a high school suitor with a vase of flowers held out; the wrinkles around his eyes made him all the more charming.

“A gift of lovely flowers for a lovely lady,” he crooned as he placed the vase on her nightstand.

“As I was driving, I found myself getting excited as the miles brought me closer to home.  I know you have been having a hard time lately thinking about all the extra work that falls on me because of your disease.  The more I thought about it, the more I thought about you.  Because of you, I am a better person.  Because of you, I wake up every morning with a smile on my face.  Because of you, I love being married.  I love you, and given the choice, I would marry you again – wheelchair and all.  You. . .you are a gift to me.”

 

 

 

You Can’t Do That Anymore


Sitting in my wheelchair, on the edge of a trampoline mat, the same thought kept running through my head.  I want to jump.  Nah.  Yeah.  I want to jump.

With one final I want to jump, my mind took off with exhilarating memories of bouncing on trampolines and flying through the air.  Two things I enjoyed as a kid: swimming and jumping.  When small, personal trampolines first hit the market, I was right there in line to buy one.  For years, I enjoyed bouncing – tiny, little flights of gravity-defying moments.

All those memories were buried away deep in the past.  Until recently, when I took my grandson to an indoor trampoline park.  If you ever have the opportunity, go.

The indoor place near me has four separate areas.  Each one designed for a different purpose: freestyle, a basketball room, a dodgeball section, and a foam pit area.  You can even bounce off the walls!

As I sat there watching my grandson bounce, jump, and fly into the air, I felt intoxicated.  My body craved to fly.  I wanted to bounce, to lift my feet off the floor.  I wanted to defy gravity once again.  For a serious moment, I contemplated it.  For a very long, serious moment.

Then reality seeped into the crevices of my gray matter.   Do I have the core strength to bounce?  How uneven is the supporting edge?  Would I be able to get to the mat and back?  What if I fall?  No, better not try.  Maybe?  No.

I live in a new world, the world known as You Can’t Do That Anymore – But You Can Remember.

Some people advise us to forget the past.  They say it is best to live in the moment.  “The past is too painful,” they preach.  While I agree that living Right Here, Right Now is a healthy lifestyle choice, the past should not be forgotten.  Memories of how things were before we became disabled don’t have to be pushed away.  Our previous experiences add a richness to our lives.  Not only are there valuable lessons to be learned, but there are pleasures to be relived.

To reminisce and, once more, taste the pleasure of precious moments are treasures to be discovered.  Just like the unsolicited recall of an uncomplicated time in my childhood, we can choose to remember with joy – not pain or regret.

I may not be able to jump, but I can fly once more.

View From My Wheelchair: Some Summertime Fun


Everything we know, knew has been turned around. Chronic illness took our definitions and buried our sandcastles. Yearnings remain, unrealizable. 

The sand at my feet haunts me with memories: 

Me, as a child, playing at the beach; Me, with my child, playing at the lake.

My heart beckons me, and I respond, “Yes, yes, I will find new ways to have fun.”

So, now, I dig deep into my soul. Pouring out my pain. Fun can be, is redefined. Laughter bursts. I find joy in watching others play in the sand and water. 

View From My Wheelchair: The Art of Me

 

A New Day
“This is the day that the Lord has made; let us rejoice and be glad in it.” (Ps. 188:24)

 

Finally, I finished my latest painting, “A New Day.”

As I mentioned in a recent post (VIEW FROM MY WHEELCHAIR: RENEWAL), my disease robs me of energy.  Still, I make plans, and even if I am waylaid, I am content in every situation.  However, my life is not only a mirror of what I say and do.  It is also a reflection of the light in my soul.

So, I continue to wage a war against my disease – not in anger but in determination.  I know that my moments are strung together.  It is as if time were paint, and I hold the brush by which I make bold strokes on the canvas of my life.

Each response applies a color.  Beauty and depth are created with blues, yellows, and reds. Carefully, I work to avoid muddy colors that can dull or darken my life.  Reactions such as anger and hate destroy the picture and leave my dreams unrealized.

Today was a good day.  Tomorrow will be, too.

 

 

Finding Enjoyment and Having Fun

 

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There you are, struggling with health issues.  Your body or your mind have betrayed you, and, now, you are a new creature, an injured bird that can no longer soar the skies. What can you do?  What do you do?

Finding ways to enjoy life is extremely difficult when there are barriers to your old ways of enjoyment.  If we can discover new interests and find new hobbies, we can redefine ourselves.  Taking hold of our thoughts and finding the determination to be somebody new is a possible change, not easy but possible. Where do you start?

I have put together some ideas on ways you can start to find a new passion.

  1. Make a list of what you feel you can no longer do.  What were your interests?  How did you spend your leisure time in the past?  For example, I have a friend who spent his free time creating beautiful art with calligraphy.  He was so involved that he belonged to a calligraphy group and went to conventions.  When he suffered a stroke and lost the use of the left side of his body and his peripheral vision, he still tried to create the precise pieces he did in the past.  It was frustrating for him.  His disability had robbed him of his creative expression.  All those years of practicing his art and perfecting his craft mocked him.
  2. Modify yourself.  Continuing with my friend’s story; after years of trying to continue to create the exacting lettering that is the core skill of calligraphy, he finally broke free of his mindset that kept telling him he had to follow rigid rules meant for the able-bodied.  This eureka moment of realizing that his lettering did not have to be perfect, that there was beauty in the imperfection; that his gift of expression was intact freed him to modify his vision of himself.  He is a pioneer.
  3. What if you can no longer partake in previous leisure activities?  Let’s say that you were a motorcycle enthusiast, but now, as a paraplegic, you can no longer ride.  Is it possible for you to list what you enjoyed the most about riding?  Can you go further and identify the emotions?  Is there a way for you to reconnect with those feelings in another way?  For example, does your local high school afford you the opportunity to host a public safety announcement on the pleasures and perils of motorcycle riding?  Could you start a group on how to maintain or repair motorcycles?  Maybe you could write about your experiences (past or present) and submit them to associations or bloggers.
  4. Recreate yourself.  As I slowly changed from an able-bodied person to a mobility-challenged person, I slowly changed the definition of me.  Just before I lost the ability to walk any significant distance, walking in the woods was a weekend retreat.  When I lived in California, almost every weekend, I would drive from the Bay Area to Yosemite.  Hiking the high trails above the treeline are some of my favorite memories of those years.  When I lived in Chicago, my husband and I would walk miles from one part of the city to the next.  To this day, I miss those walks.  What can I do about it?  Find a new pleasure.  Now, I write.  Over the years, many people would tell me that I should write.  They thought that I had something worth saying.  So, I decided to venture into the unknown and recreate myself.  I would not term myself as a writer, but I am someone who writes about my experiences and what matters to me.  I am an encourager.  Writing is my new avenue of expression.
  5. Have you found a new interest?  As I wrote about in a previous post (So Goes My Nutrition, So Goes My Health), my commitment to taking care of my body and nutrition, led to an interest in food.  I thoroughly enjoy researching recipes and modifying them; finding articles on what is happening to my body and how food plays a significant role; and talking to other people about what they have discovered.  Even though I cannot do the actual cooking, I take an active role in meal planning, grocery shopping, and food preparation.  My interest in food has helped me to maintain my weight (and, in fact, I am losing a few pounds) in spite of the time that I spend sitting.  I don’t spend calories walking and I cannot exercise effectively, but I can feed my body good, nutritious, and healthy food.
  6. Continue a previous hobby with the help of a friend.  About five years before I was diagnosed with myotonic dystrophy, I started to take drawing and painting classes at the Art Institute of Chicago.  This activity stemmed from a childhood interest that sat in the corner of my mind.  One day, my husband asked me if there was anything that I had ever wanted to do but never did.  Yes, there was.  I had always wanted to draw.  As a result, he encouraged me to attend art classes.  Without his encouragement, I would never have followed up on my childhood dream.  Now, painting has become strenuous, but I am blessed to have the assistance to get me settled in front of a canvas, my paints opened, my palate at my side, and my brushes before me.  I can only paint for an hour or two at a time these days, but I can paint.
  7. I know, I know, we have all heard it before.  Volunteer.  There must be something about which you feel passionate.  Not only does volunteering help those in need, but it help you, too.  Interacting with people in different social settings has a positive impact on your psychological wellbeing.  You may find that as you turn your focus outward, you will start to feel less stress and more joy.  One caution: make sure you volunteer in a position and a place that fits you.  There are abundant opportunities in your community.  Getting out of the house and away from tension-producing patterns of behavior will give your immune system a boost.

In summary, your disability has redefined you.  It is time to take back control of your life.  What you think has a direct impact on who you are.  Whether your disability is physical or psychological, you can break out of old patterns that no longer benefit you.  Give yourself the gift of a new you and find freedom and fun.

4 Ways Handicapped People Are Risk-Takers

Living in a wheelchair is risky business.  The able-bodied world holds danger at every corner and on every street.

Street-Danger-1Risk #1:  The Street Risk.  Mobility-challenged people are quite willing to acknowledge that the ADA has encouraged the implementation of friendlier access to public spaces and transportation.  However, in many cases, the practical application has failed to provide the intention of the law.  For example, curbs.  The curb in front of my building was modified to accommodate the requirement of the ADA but failed in its accommodation for the user.  Instead of having two ramps for each crosswalk, the developer saved money by making the ramp at the apex of the corner.  Because of this design, I am forced to leave the crosswalk and place my wheelchair (and me) in the path of oncoming cars.  You may ask me why I do not choose another way.  The answer:  the other way has an alleyway that does not have a curb cut at all.  So, I am forced to roll into the street.

Another time, I was happily rolling along on my way to the store when I found my way blocked.  Instead of a sidewalk, there was an orange cone in the middle of a gaping hole.  Turning around, I backtracked to the nearest corner.  TStreet-Danger-3o my dismay, the busy street had no pedestrian crosswalk to get to the other side.  Again, I was forced into the street.

The street risks are endless.  In addition to curbs and missing sidewalks, there is the all too common problem of cars sitting in the crosswalks or blocking sidewalks.

 

Pedestrian-DangerRisk #2:  I Might Run Into You, After All, Risk.  Most pedestrians are oblivious to the world around them and, especially, to the mobility-challenged.  Whenever a physically disabled individual ventures into the general public, they carry the burden for the general population.  For example, I live in an area where there is heavy foot traffic as well as street traffic.  Everyone is busy.  Everyone is oblivious.  I am amazed at how many people do not pay attention to their surroundings.  Because I am concerned about running into someone, I call out a warning.  “I am on your left.”  Many times, actually most of the time, it has no effect.  I am invisible, and my voice is unheard.

There is a real risk of an accident.  My electric wheelchair has no break.  I control my movemenPedestrian-Danger-2t with a joystick.  If I let go of the joystick, I roll to a stop.  It is a frightening experience to have someone walk in front of me.  There have been too many times where I cried out in fear of hitting them.  Their reactions fall into two general categories:  (1)  Oh, I didn’t know you were there; and (2) Watch what you’re doing!

 

Risk #3:  The Swinging Door Risk.  Public doors have the handicap symbol but do not have a handicap button.  Yep, it’s true.  The physically handicapped person has the following options:

  1. If you have the use of both arms and hands, try to open the door (before getting hit).  Now, attempting to open a door and operate a joystick at the same time is very tricky.  Doors usually open on the right; they swing open to the right; since I am right-handed, my wheelchair control is operated by my right hand.  Imagine this: I grab the door handle with my left hand while seated; then I pull the door to the right while rolling backward.  If I am successful, I am now behind the door to some extent, and I need to get around the door while holding it open.  It is an almost impossible task; or
  2. Sit and wait for an able-bodied individual to open the door for us.  This may sound as if it is an easy solution, but it is not.  Think:  snow, cold, rain, and appointments.

On a side note: One time, I was yelled at by the receptionist at my doctor’s office.  Their office door is frosted glass; they have no handicap button and no door bell.  I rolled up to the door and tried to open it and could not budge the heavy glass door.  So, I knocked.  No one responded.  So, again, I knocked a little harder.  Still, no response.  On my third try, I knocked harder.  This time, I got a response.  A receptionist swung the door open in a rush, looked at me, and said,  “You could have broken the glass!  Why didn’t you just come in?”

I looked at her in amazement and calmly said, “How?  Why don’t you have a handicap button?”

“Humph,” she replied and stomped away.  But, she did hold the door open for me first.

 

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#4:  The Hidden Dangers of Parking Lots.  Wheelchair-bound people are short.  Well, we are all different heights, but we sit below most individual’s peripheral vision.  As a result, knowing that we are already invisible to the general public, when in parking structures, we have to look for people getting into cars; watch for exhaust fumes; avoid being clipped as cars quickly pass us; and be on alert for backup lights.  There is no safe place in parking lots for us.  We are in constant danger of being hit by a car.

 

The above examples are just a taste of the risk involved for the mobility-challenged individual.  I am sure that you could make a list of four more risks.  We live in a risky world full of opportunities, challenges and struggles.  As we gamble to venture out, we are making ourselves seen and heard.

 

Thirteen Steps to One Lesson

 

Stewing, yep, I was stewing in a mixture of emotions.  Feeling frustrated, discouraged, ignored, discounted, slighted, perplexed, surprised, and pressured.  It was unexpected, but, then when would I expect to have no access to a public building in Chicago?

Sitting at the bottom of the stairs and looking at the problem, I was tempted to turn around and leave.  We were at a cathedral for the funeral service of a friend’s mother.  My friend was not expecting me, but I was concerned about her.  She loved her mother deeply, and I wanted to share in her loss.  How was I going to get up those stairs?

My husband (Dennis) and I had driven in from Michigan, in high winds causing whiteout conditions the day before, and spent the night in a hotel so that we would arrive on time without any hassles.  Yet, here we were facing a big one.

Of course, being handicapped meant no front door for me;  I had entered the building via a side door.  As Dennis opened the large, oak door and I rolled in, immediately, I saw the problem: a looming flight of steep stairs.

“This is the handicapped entrance?” I wondered.

Then, I saw the wheelchair lift to my left.  I rolled over, opened the door, and eased into the small space.  Looking for the key to start the lift, only then did I notice that it only went down to the basement.  There was a flight of stairs over my head.

I wondered, “Do they have an elevator somewhere else in the building?  Do I have to go down to get access to the elevator to go up to the sanctuary?”

Just then, a priest appeared out of nowhere.  “Will this lift take me to an elevator so that I can get to the main floor?” I asked.

“Oh, no,” he said as he pointed to a worn out chair lift on the other side of the entryway.  “The wheelchair lift only goes downstairs to a small chapel.  We only have the stair lift to get upstairs.”

Now, that was a problem.  “How will I be able to into the cathedral if I had to leave my wheelchair behind?”  I asked.

“We’ll carry the wheelchair up the stairs,” he said.

“The chair is over 350 pounds.”

“We will get you up the stairs and then carry the chair.”

“No, the chair is 350 pounds without me in it.”

“Well, we only have the stair lift,” the young priest replied.

So, I rolled over to the stair lift wondering what I was going to do once I got to the top of the stairs, if I got to the top of the stairs.

I lifted myself out of my wheelchair and swung around to sit on the stair lift.  As soon as I sat down, I started to fall.  I cried out in fear of hitting my face on the marble floor.

“Help! I’m falling! Help!  Help!”

Luckily, Dennis was right there and caught me as I slid down.

The seat was broken.  The whole front half of the seat was missing support.

“Hmm,” the priest said, “We will have to get the engineer to put a piece of board under the seat.”

“How am I going to get up the stairs?” I said perplexed at his lack of compassion and empathy.  He could only address how to solve the seat and not even address that I almost fell to the floor flat on my face?

“I don’t know,” he responded and walked away.

Yep, he walked away.

It was decision time.  Would I just leave?  I sure felt like leaving.  What a waste of energy and money to come this far just to turn around and leave, I thought.  What about my friend?  She just lost her mother.

Dennis suggested that I try to walk up the stairs.  He would be there to help lift me up.  Holding out his arms, he said, “Susan will want to see you.”

“Okay,” I told him.  “Let’s give it a try, but I am not sure about this.”

I scooched over to the stair railing.  My hands were too weak to hold onto the wooden handrail. So, I wrapped my arm over the handrail and in-between the wrought iron vertical slats.  I placed my left foot on the first stair, then after I was steady, Dennis (holding me at my waist), lifted me up as I raised my right leg.  Step by step, we followed the same pattern.

After several stairs, I started to pant.  Midway through, I needed to rest.  Finally, exhausted and out of breath, we reached the landing.  Now, the next problem that needed to be solved loomed before us.  How was I to get into the sanctuary and to the nearest pew?

“How far do I need to walk?”  I asked.

“About 100 feet,” came the reply.

By this time, a woman had stopped to help (others had passed us by without a word).  This kind stranger held me by my right arm and Dennis by my left.  Bent over, struggling with every step, spending all my energy, I eventually reached the pew and collapsed onto the wooden bench.

As I looked around, I discovered that I was 200 feet away from where everyone had gathered.  All that work only to be removed and isolated.

Trying to gather my thoughts and feelings, I asked God for help.  “What can I learn from this?”

Without delay, the answer came:  Sometimes, our path requires extraordinary effort.  Not everything will be easy even when the motives are pure.  Patience is born out of adversity and hope springs from courage.