Things Manufacturers Don't Think About

Automakers rarely think about the needs of the disabled. I was having difficulty getting in and out of our vehicles.  Once in, I struggled with the seats. A longer trip was nearly impossible because of the pain that being inside of the vehicle caused. It became obvious that we needed to look for a different vehicle. I needed a vehicle with a seat height between 30 and 34 inches off the ground. So I embarked with my computer and a tape measure to find an appropriate vehicle for people with needs like mine.

Approaching a dealership was an interesting experience. Salespeople were not prepared for what I was there to do. They were convinced they could talk enough to get me to purchase a car right away. They were sure that the car I was looking at was perfect for people with disabilities. But I was not interested in their sales pitches. I was there for research.

My first goal was to find the vehicle that was the easiest to get into and out of. There are so many obstacles.  Doors that are too heavy, dashboards that protrude into the opening, seats built for setting in, but not getting into, steering wheels that are in the way, and distances between the rocker panel and the seat.

One would think that a mini van would be best for a person with disabilities. The doors are large, with few barriers.  Not so much. The distance between the rocker panel and the seat of the Toyota Sienna was the largest of any vehicle I measured. Unless you are able to climb into the vehicle and move all of the way to the seat, it becomes impossible. A seat that is twelve inches from the edge of the rocker panel is impossible.  Manufacturers try to overcome that gap by adding running boards. This provides another step to help a person get into such a vehicle.  But if climbing is a problem, it only adds to the problem.  Most SUV's add running boards, thinking they are being helpful, but not so much.

I was really interested in a Subaru, but they are hard to get into. Even their larger model, the Tribeca, was a problem.  In fact, the Tribeca was more difficult to climb in than the Outback.  The Buick Acadia, and it's twin Mazda MX9 were easy to enter and very comfortable to drive.  Unfortunately it didn't completely work for me.

Hands down, of all the vehicles that I tested, the Toyota Venza was the best.  Seat height was great, door opening was accessible, and the smallest rocker panel I found (only six inches from opening to the seat).  The second best vehicle, for so many reasons, was the Ford Explorer.  As long as there are no running boards, the Explorer had some exceptional details, which made it a perfect fit.  The seats move back and the steering wheel moves out of the way.  The seat height is perfect to slide into, and the number and kinds of adjustments available made it the best vehicle for me.

I am not a in the business of recommending cars.  I can only relay what I discovered with my computer and tape measure.  I would be interested in your thoughts on this matter because people with disabilities need this kind of counsel to help maintain our mobility.

I'd Rather Be Hopeful than Hopeless

It has been six weeks since the neuro-stimulation implant procedure. People have been telling me that it will give me a whole new life. "How do you feel" they ask? I feel like me, with swelling in my back, and two new scars. I knew that I would not be able to judge any difference until I passed my mandatory recovery period, and I could take my back for a test drive.

Well over the weekend, I got out with my wife, and my sister, and worked on a project in the back yard.  I should say that they worked on the project and I mostly coached.  All I did was make a few cuts with a circular saw, then sat and watched as they did the heavy work.  The end result is that the project is finished and beautiful.  I, on the other hand, am in pain.

Here is what I have learned from my weekend.

First and foremost, I have learned that people with disabilities are truly blessed when they have family who are supportive and will do anything to help. No complaints, no criticism, no questions, just loving support and encouragement. I could not ask for a better support system than I have around me. It occurs to me that I have a choice to be blessed by their love, or be depressed that I can't do something.  I chose to be blessed.

Secondly, medical procedures may help you cope with your disability, but there is rarely a magic bullet.  Does the procedure help? Ultimately, yes. Is it perfect? No.  Again, I have a choice: be bitter at the medical profession, frustrated at my lot in life, and angry that nothing seems to cure the problem, or happy for the relief I did get, grateful that I have a good life (in spite of the problems), and content with what I am able to do. I chose happiness, gratitude, and contentment.

Thirdly, I have come to realize that my disability is a permanent reality. I am not going to wake up one day and have it all become a distant memory. I cannot afford to dwell on it, complain about it, or expect everybody to understand my issues. I don't need to worry about those who criticize, misunderstand, and sneer in public because they do not understand my disability.  The burden I carry is heavy enough without piling their opinion on my back too.  I chose to make the best of my life, within the limitations that have been set for me.

Finally, I know that a large part of coping with my disability is my own attitude toward it. If I am hopeless, how long with my family continue their unwavering support? If I am bitter, how many doctors will continue to search for acceptable treatments?  If I am hopeless then what will be the quality of the life I still have control over?  I will have down days, but my attitude will help determine how many of those down days I will have.


I remember visiting an older friend in the hospital.  His diabetes was so bad that they eventually had to amputate his feet.  His family was concerned about his attitude when he came out of the anesthesia, so they asked me to go in first.  I will never forget what happened when he woke up.  He looked down the bed, and say, "Wow, isn't that wonderful.  I can lay flat in bed, and my feet don't mess up the covers anymore."  I want his attitude, and that will happen only when I commit to being hopeful and not helpless.

You, of all People, Shouldn't Judge Me

So, here we were, at the airport ready to board a plane. I had just been through a spinal neurostimulator implant. I was wearing a back brace because the surgeon told me that I needed it for a while. In my hand was an early boarding pass because I needed a certain seat on the plane.

Just before boarding began, a woman pushed herself in front of me, saying that she needed to board before me, because she had a bigger need than me. "Believe me, a little back brace is nothing compared to what I have. You wouldn't want to be me" was her exact statement. After a little banter she agreed that my condition was a little more than a back brace, but she committed to remain in front of me in line.

I was struck by the prejudice people with disabilities face on a regular basis. We are judged by how we look on the outside, and the possibility of hidden disability is dismissed as unimportant. But, I was dumbfounded by the insensitivity of this woman with a hidden disability of her own. She wanted to engage in a "pissing" contest over who's hidden disability was worse. Unbelievable!

If you have a hidden disability, you know what I am talking about, and I am certain that you have stories of your own. To you I offer this statement. I respect you, and all of your struggles. I do not need to compare notes and prove that I am better off, or worse off, than you. It is not about degree's of difficulty, but about mutual support. You struggle with your disability everyday, and you don't need to be judged by others who live under the same scrutiny.

Do you have a story where you have been unfairly judged?  Share you story with others.  Write a comment, and share your story with others.  Le't see how widespread this problem is.

Overseers

            When Marla’s dog had puppies, Kristy was one of the first in line to adopt one of the cute little Lab’s.  Chase has lived with Kristy and Joe for several years.  The household has gone through several changes during those years.  Chase adapted to the birth of one son.  Then came another son.  Chase has assumed the role of raising the boys.  But his job is much greater than just the boys.  The family of four is also a part of a much larger family group, all with kids.

            While this may be a problem for other dogs, it is a blessing for Chase.  If you in could interpret his bark, he would likely be saying, “Bring it on.”  He has become an overseer for the boys, and all of their cousins, and friends.  Chase is a protector, an encourager, and a shepherd.

             1 Timothy 3:1 says, “It is a trustworthy statement: if any man aspires to the office of overseer, it is a fine work he desires to do”.  In every congregation are a group of volunteers, who have made the commitment to become overseers of the flock.  They are the ones who look at the people coming through the doors and say, “Bring it on!”  They are the ones who take seriously the words from Acts.  “Be on guard for yourselves and for all the flock, among which the Holy Spirit has made you overseers, to shepherd the church of God which He purchased with His own blood” (Acts 20:28).

            The overseers of your church deserve respect.  They invest countless hours in the work of the church.  Rarely do they receive recognition for what they do.  Their sacrifice means less time for family, nights away from home, and responsibilities on weekends while others get to attend services and go home.  At times they must take Biblical stances, and make crucial decisions that add stress to their own lives, but they do it willingly because they have accepted the job of overseer.  They also invest their time caring for those who cannot care for themselves.  “Pure and undefiled religion in the sight of our God and Father is this: to visit orphans and widows in their distress, and to keep oneself unstained by the world” (James 1:27).

            When was the last time you sought out one of the elders of your church, and thanked them for the fine work they do?  Honor has benefits for the overseer, and it has benefits for you.  Following the leadership of someone you do not honor is much more difficult.  Placing your trust in those who do the good work helps you follow their leadership.  It also pleases God.

It Hurts to Laugh

This last week, I took the first step toward a spinal neuro-stimulator implant, a device that blocks pain.  The trial only lasted a couple of days, but what a difference it made!  Pain was virtually eliminated whenever the machine was on.  I could walk normal, and people said that my countenance even had an improvement without pain.  There are a few drawbacks.  Not the least of which is that the stimulation increases dramatically when you  cough, sneeze, or laugh.

I will gladly make every attempt to control sneezing, and coughing.  Those activities only drive people away.  But I have decided that it is worth jolts of volts to experience the joy of laughter.  When I laugh, those around me are happier people.  When I laugh, conversation is about positive and happy things.  When I laugh, I forget life's difficulties.  Research even shows that when I laugh, I add years to my own life.

The lesson that I learn from this is that some things are worth a little pain.  Love is worth whatever pain may eventually come.  Relationships are worth occasional pain because of the growth it brings us.  But for me, laughter is worth the pain.  The benefits of the stimulator makes it worth the temporary pain that may come.  But more than this, I don't ever want to stop laughing.

So, when I say, "it hurts to laugh," I really mean it.  When they implant the permanent stimulator in me, it will hurt every time I laugh.  So what?  I guess I will give new meaning to the phrase, "I laughed until I cried."

What sacrifices are worth making to you?

When Relief is not up to Me

There are certain things that I can do for myself. Whenever possible, I accomplish those things. I need to keep moving, and I enjoy feeling productive whenever possible. There is, however, one thing that I cannot do: Motivate Insurance Companies.

A month ago, I was recommended for a neurostimulator implant to quiet the nerve impulses in my spine. This should be the final touch in solving what has been a life long problem. Since that time, the insurance company sent one letter out saying that they had received the request, and made it clear that they might or might not pay for it. What?

I continue to struggle, and they can't decide? And besides, who is that person, or group of people that can't seem to decide on my future? I cannot simply be frustrated with the insurance company. At best, there is only one person in the entire system who even knows about the request. I am just a form, in a file, in a basket, with a bunch of other files, on the corner of a desk somewhere. The employee comes in, goes to lunch, and goes home at the end of the day. Lunch and a couple of trips to the water cooler each day, a quick look at Facebook, a few emails, and a meeting fills this person's day, but my file sits neatly in the basket for some other time.

What I have learned through the years is that pain does not breed patience. Just the opposite is more true. Pain can push even the most patient person over the edge. Of course, that part is not in the file. It is my problem. Just another thing to handle while I wait for other people to decide if I will find relief or continue down this all too familiar road of pain.

Disability's Funnel Effect

Those who have been placed on disability sometime in their adulthood experience what I have come to call the funnel effect. Understanding it helps the person with disabilities to understand what is happening with they are in the smallest part of the funnel. Here is how it works.

When you were healthy, you had a fairly large group of friends. They may center around sports, or other activities. Your friends come through the things your children are involved with. Church, civic organizations, charity cause, and neighborhood gatherings add to the opportunity to develop friendships. You may have done all of these things when you were healthy, and your list of friends and acquaintances was very broad.

When you became disabled, activities began to go by the wayside. Friends are not sure what to do for you. The activities continue, so their focus goes with those continued activities. Your absence is replaced by someone new. You can no longer play the active games you were involved with, so that group of friends slowly moves on. they want to be your friend, but they were friends for a reason, and sports were the reason. With these changes you slide down the funnel.

Other friends continue to love you for a while. These would be friends for a season. They support you, and try to include you in activities. They think about how to alter activities so that you can be involved. They are very supportive and you value their efforts. Unfortunately, whether you are struggling with a disability or you are completely healthy, seasons change. Someone moves away, the sports season ends, your kids graduate from high school, your job ends. All these mark the changing of a season, and the friends you had through those activities also drift away. With the changing of the season your friendships are becoming more and more limited. Friendships are replaced by loneliness, confusion, and maybe even depression as you reach the narrowest part of the funnel.

Fortunately there is another group of friends. These are your friends for all time. They love you and stick with you no matter what life changes you go through. Your disability does not affect their love for you. Friends for all time don't skip a beat when it comes to the changes you have gone through. Unfortunately, the number of friends for all time come in small numbers. This is normal no matter who you are. Many people are lucky to have three to five friends in this category.

The effect of being squeezed down the funnel is a feeling of isolation and frustration. If you are in the narrowest part of the funnel, take heart, a new season is approaching. With a new season comes as your focus changes. You join a new organization that fits your new lifestyle. You find people who have similar experiences and they become your friend in your new season of life. Fortunately, you are now through the toughest part of the funnel, and you are beginning to feel like a new person.

As you get through the physical and emotional struggles of your disability and become more comfortable with what you can still do, you find new activities. These activities are more fitted to your new life. New activities mean you have new reasons for developing friendships. You have made it through the funnel, and you have a new sense of normal.

How long does it take to make it through the funnel? The answer to that question lies with you. How willing are you to work your way through it? How long do you want to remain squeezed in that period of frustration? Perhaps understanding disability's funnel effect will help the process move quicker. Working with the natural effects of the funnel gives a new perspective of the process. If you are being squeezed, take heart new seasons are approaching. You will find new activities and thereby discover new reasons for friends. Your future may be different, but with a little effort it can be as rewarding as the life you used to live before becoming disabled.