Troubled Soul

What do I talk about today?  I am not sure but I am watching a show on TV with Kiefer Sutherland called 'Touch'.  He is the single father of son with Autism and the story line is about how this autistic child brings his father to moments of self discovery.  To many the scenario of this story may seem quite implausible because the withdrawn autistic son leads the father to a point (of understanding without verbal communication) where the father is able to have an impact on stranger's lives through numbers.  It takes me back to a period in the early to mid 70's when I worked at the State Hospital in Fort Wayne, IN.  I was trying to put myself on a sounder financial footing so that even with the benefit of GI Bill support I could return to school.  I had no concept of autism before working at the State Hospital but I encountered so many individuals who spoke to me through their eyes without a word spoken or heard.  Most of these individuals, I believe, were placed at the State Hospital through a hopeless frustration of what to do and an inability of how to meet the immediate and emotional needs of such individuals.

My time at the State Hospital was difficult in knowing how to deal with the needs of individual residents and provide appropriate treatment though I was one having a hands on relationship with residents while taking direction from a staff that was aloof at the best of times.  For right or wrong our government decided to close such institutions and there were those who could thrive in a healthier more unstructured environment than what had existed.  I still feel that there is a need for specialized mental health care facilities that can help and support those who are mentally challenged and those who don't seem to be able to be able to cope in 'Our Real World'.  I have no answers but I don't think President Reagan's answer to mental health in this country was an avenue with long lasting results and benefits.

Why We Drive:

If anyone notices this, I admit to a long absence.  I have been spending a lot of time on FB which isn't always conducive to expressing one's feelings.
 

I know that I can be strong willed and even vehement at times, but emotions dwell deeply within me and are ever felt.  The reality of living with MS (Multiple Sclerosis) becomes more present some days than I really wish to recognize and give credence to a disease that I really want to ignore.  Why do I want to ignore it?  The answer is simple because it absorbs my life and controls too much what I am able to enjoy and perceive as the blessings of life.  Yet, I went to a wedding of a dear friend as well as a former student a few years ago and I found myself involved in a conversation with a common friend.  He challenged me in a way that any person who suffers from a chronic incurable disease should be challenged.  He said, "Mr. J, you gripe and complain too much".  He works for the State Department and at that time had recently been in Haiti after their devastating earthquake.  I thought to myself that even with my own personal agenda that I must sound awfully petty in a world suffering from such turmoil and international indifference.

 
I spend too much time thinking at times and contemplating how this disease that consumes and seems to direct my life has isolated me and engendered a feeling of anger.  Yet, who is that anger directed toward or why should I even feel this way toward anyone or even myself.  I have found that as often as Multiple Sclerosis is talked about in the public media how little most of us know about it.  I don't want this to be a scientific discussion of the nature of the disease other than it is an auto-immune disease of the Central Nervous System.  That can lead into a discussion of import but I want to spend a moment, I hope, on the emotional impact on such a disease and the general indifference to the ADA (Americans with Disabilities Act) signed into law by George Herbert Walker Bush.

I live on the East Coast in Northern Virginia and most of my family live in Indiana or west of the Mississippi and it is usually easier to drive than use any other means of transportation.  It is not a mystery why because there are so many things I need such as a wheelchair, a scooter, a shower chair and the list could go on and on.  The problem with traveling is that you will eventually need a restroom and for most people with a disability like mine it also means you will probably require assistance.  I need such assistance which means my wife so we have discovered Walmart normally has a family assistive restrooms and truck-stops with showers for drivers provide assisted care for the disable as well.  It is still not easy but it is by far much better than flying when every walking aid is taken from you and is gate checked.  You need either a very short flight or a very large bladder and we know how conducive an aircraft restroom is to allow the assistance of two people in such a small space that you are provided in a modern commercial aircraft.

 
When I have had to fly on an emergency basis, I was fortunate enough to take a Southwest flight where there wasn't an assigned seat.  In that situation I could be the first person on the flight and the last person off.  Even with Southwest there are no provisions or procedures in place to enable the disabled passenger to have the same experience and protection of a stress free trip without the convenience of restroom providing privacy and room for the assistance I require.  However, this an industry wide problem and not limited to Southwest.  Yet, I wonder, at least to myself what am I do when it seems like my neighbor or fellow citizen doesn't care about a law like the ADA.  If we believe in Locke's and Jefferson's 'Social Contract', we can not deny the role of government in our lives.  That role can be positive or negative depending on your point of view, but it is an undeniable role that isn't going to disappear anytime soon.  Yet, it will hopefully encourage political discourse without which the safety and security of all of our citizens could be endangered.