World’s First All-Accessible Water Park

Inspiration-Island-Map

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

The-Gift-WEB

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.”

 

 

 

The Invisible Woman

Rose Wolfe

I have the unique ability to be invisible.  For a while, I thought it was because I am shorter than most adults.

If that is true, I thought, how is it that children are not bulldozed down into the ground?  Maybe, I reasoned, that is why kids have such high voices; it is a survival mechanism to alert adults around them that they are “down here.”  Eventually, I came suspect that something else is going on – a societal preference.  Our mores define children as needing protection and consideration.  So, we notice them; we see them.  The same is not true for the disAbled; our societal position is muddied and conflicting.  As a society, we nod our heads with smug smiles agreeing that the disabled should be treated with respect.

As a wheelchair occupant, I can tell you that society does not often practice what it preaches.  I will admit that a small segment of people will notice me and make accommodations.  However, navigating the streets, stores, and social situations is a burdensome task.  All my plans and movements must – and I do mean must – include me being responsible for everyone in my vicinity because I do not exist.  Sounding alarms as I wheel with the foot traffic, I need to watch for cigarettes, purses, bags, and people who swerve in front of me.  Without as much as a blush to the cheek, they admit, “Oh, I didn’t see you.”

You might think this is as humiliating as it can get, but no.  Worse yet are the times that I am scorned for being invisible.

Recently, my husband and I spent the day in Chicago at Navy Pier.  I was sitting out of the major pedestrian traffic path, but still blocking a small walkway.  (I have to sit somewhere.)  With a quick step and an urgency of importance swirling about her, a woman came straight towards me.  She came to a screeching halt (I heard her brakes squeal) as my invisibility faded away.  With furrowed brow and lips, she waved her hand as if swatting an annoying insect (speaking is difficult with a frowning mouth) for me to move.  Realizing that I had become visible, I turned on my wheelchair.  (Let me give you some inside information, electric wheelchairs take about five seconds to charge up before they are operational.)  Well, the necessary five seconds was too long for her.  Miss I Can’t Wait Because I Have Important Things to Do, huffed and puffed (was she about to blow me away?), told me to move (without wanting to hear that I needed to wait for my wheelchair), stomped about (was she ready to stampede me?), and then turned sharply to her left, took three steps, and walked (or should I say charged?) past me.

With her went my moment of visibility, and I retreated once again to wait for the next moment.

 

Standing in Awe

07fbf-sojourner

It all started simply enough.  Jasper wrote a post (An Amazing Choice) about a young man, Marshall, with cerebral palsy.  As typical for him, Jasper piece was insightful and thought-provoking.  At the end of the piece, Jasper offered his readers the opportunity to contribute to his post.

As someone who has made certain discoveries and choices with how to live with a chronic illness, much of what Marshall had to say vibrated within me.  So, I made the following comment:

“Jasper, thank you for sharing this post. Just recently, I have been formulating a concept that there is the Gift of Suffering. In its most basic form, the idea is that our suffering adds to our spiritual maturity. As we continue to add to our faith, we grow in our relationship with Christ. Once we trust God with our lives (and, we, who are disabled, know the meaning of this), we can move forward in our appreciation of God’s plan for us. One gift: tribulation develops patience; and patience, character (maturity). Another gift of suffering: we can then comfort others with the comfort that we received from Christ.”

Having the opinion that there can exist such a thing as a Gift of Suffering does not dimish the hardship that suffering brings with it. Do not misunderstand me, please. suffering is not a preferred way of life, but it can change us into more compassionate, patient, thoughtful, kind, loving, enthusiast, insightful, creative, and respectful people.  There are other ways that these attributes can be added to our lives, but disabilities have a way of hurrying along the process.

Again, do not misunderstand me, please.  I am not saying that if you have a chronic illness, you will automatically join the club of those who have found the secret of being content with their situation.  It is a choice – always and daily.  Jasper made that choice.

In a more recent post, he wrote:

“I was in awe when I realized how my experience and gradual understanding of the suffering surrounding my ABI reflected the comment you made a few months ago. I would reflect on your comment at times and anticipate a blog post in which you had developed your thoughts further. Talk about mutual inspiration and support. . .”

To read more of what Jasper shared, please click on The Gift of Suffering

I’m Guilty

 

abstract
Artwork by Rose Wolfe

 

I am. I am guilty. We don’t use the word anymore, do we? The only time that we hear the word guilty is when it’s applied to someone who’s committed a crime.  Nevertheless, I will use the word guilty because it applies to me.

I am guilty of having a genetic disease. I carry a debilitating, muscle-wasting criminal in my DNA.  The sentence handed down? The rest of my life spent in prison – barred without walls.   The worst part?  This genetic-code criminal is capable of dwelling in my child’s DNA.

How many people with genetic diseases feel guilty, I wonder?  Who do we tell?  We know that we can’t apply social justice standards. No crime committed. Still, we feel responsible.

For what you might ask?  For the extra load that our partner has to carry, for not being able to participate fully in the lives of our loved ones, or for having to excuse ourselves from functions, for a myriad of reasons.  Still, others may feel, as I do, responsible for our genetic makeup. What can we do?

Pardon ourselves.

Wha’d Ya Say?

 

casting-stones
Pastel Drawing by Rose Wolfe

 

Not everything is worth saying, much less repeating.  In fact, we should probably spend a lot more time thinking before we let words tumble from our tongue.

A few days ago, I read another FaceBook rant.  Yes, I confess, I try to read everyone’s post.  It is a character flaw of mine.  Somewhere along the way, I developed the belief that if it is worth putting down on paper, then it must have some value, some weight.  After all, it takes initiative to articulate concepts.  Big mistake on my part.

At one point, there was an effort to writing.  Grammar, sentence structure, word choice, spelling – all the old rules of written communication.  While I will acknowledge that there are new ways of communicating and that rules do morph to reflect current trends, I still am stuck on the idea that giving life to words should mean something – something of value.

Instead, we have devolved into a multicultural, international mess of inarticulate, hotheaded, screaming mass.  In this tumultuous time of insanity, an eruption of control grabbing is spewing acidic hate around the globe.  Chants of peace and love have been married to war and hate.  Oh, and yes, we (whomever that might be), we are right.

What does all of this have to do with me, a handicapped woman trying to thrive in her Midwestern town?  Everything.  There are people struggling each day to “cope” with pain, disease, and despair.  All the while, physically healthy people are wasting their time – and mine – finding ways to bash or belittle another person.

So, before, you write another rant about some topic that happened to fall into your mind, take a moment to think.

Wha’d ya say that was worth my time?


Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Phil. 4:8

What Do You See?

 

Have you ever tried your high-beam headlights when driving in a dense fog?   Scary, isn’t it?  The greater the illumination, the less that you see.

Sometimes, medical personnel used their “high-beam headlights” when caring for the chronically ill; they are so intensely focused on their area of expertise that they cannot see the person before them. Scary, isn’t it?

Have you ever heard the joke:  What’s the difference between God and a doctor?  God knows he’s not a doctor.

Joking aside, I have a benevolent attitude regarding people, even doctors.  However, it is true that some medical care providers have trouble listening.  Still, doctors do their best with what tools they have available to them.  And, that is the problem: their tools.  Every doctor approaches their patients with a complete set of lights (beliefs) that they carry around with them.

Those of us within the chronic illness community have more doctor appointments than the average person; consequently, we begin to understand our doctors’ weaknesses and strengths.  In addition, we develop a greater understanding of our body’s messages.  We know when something is wrong, and often we know the likely culprit.  Yet, it is difficult to convince our doctors to see us through the fog of symptoms.

For example:  Because my lung muscles are inadequate, my blood oxygen levels drop during the night.  Consequently, I need a CPAP machine.  Essentially, it has two cycles: one which blows air into my lungs and another that stops blowing to allow air to be pushed out of my lungs.  Since my muscles are getting weaker, the pressure necessary to blow air into my lungs is continually being increased by my pulmonologist.  This is where it gets sticky for me.  The complicating factor is that my lung muscles are too weak to push the air out.  The result: a build-up of carbon dioxide in my bloodstream.  Not good.

How does the above work as an example?  Testing for carbon dioxide levels in the bloodstream is very expensive.  (In my case, this would be a low-beam headlight.)  Consequently, the relatively easy and cheap measurement of oxygen levels is used to measure lung function.  (The high-beam light.)  So, even though the results of the tests are indicating that I am getting adequate oxygenation at night (thanks to my CPAP), the test does not measure carbon dioxide levels – which are being elevated as a result.  The medical community is shining their bright light on the problem of oxygenation; however, the problem of carbon dioxide levels is hidden in the fog.

It is not only doctors who carry around a satchel of lights (attitudes and beliefs) that often blind us.  How I now approach a solution to the conundrum of oxygen/carbon dioxide all depends on what light I choose.  The reality may be that I cannot resolve the problem on my own.  I may have to battle the medical community (and insurance company) to take another look at the problem. Or, there may be no solution available.  No matter what, my perception will affect what I see.

All this to say the following:

Every person around us is facing difficulties.  Are we being blinded by our prejudices?  Can we see the person, or do we see our own light reflected back on us?

If you think you don’t pre-judge people, let me say two words:  Trump, Clinton.