To be a member of the disabled community does not and should not imply we all have the same physical and mental challenges nor do we share the same needs for help and assistance. However, I also feel very strongly that there are certain attributes which can be cultivated which can make living with a disability easier.   

 

When I came home from the rehabilitation hospital and my physical health improved I became desperate to regain some control over my life. In addition to the physical results of my accident I was dealing with tremendous mental anxiety which left me frightened to be alone, afraid of the dark, fearful of the unknown and scared to be in certain places or positions. I started having night terrors and was anxious over my inability to exercise any control over my environment. Prior to my accident I prided myself on the control I had. Having been a licensed New York State Guide for over 23 years, I had taken many trips into the wilderness. I enjoyed the fact I was self-reliant and ready to handle any situation Mother Nature might place me in.

 

As my health began to improve I knew I had to gain more control over my environment. This was the beginning of what I now call learned empowerment. I was fortunate to have a determination that helped me face challenges head on. I believe attitude is the critical ingredient for empowerment and important in the early stages of recovery but less so after time. With quadriplegia, initially you seem to be at the mercy of everything and everyone. Little or nothing seems within your control. It became vital for me to regain control of some things regardless of the price that had to be paid. The demons came out at night so that’s where I began.  Small things at first such as leaving a light on at night, having an MP3 player next to the bed (which I could only turn on using my teeth), an oversized remote for the TV available, a pill box with Xanax within reach and a bed control clipped on my shirt which allowed me to raise myself in bed.  As I was able to regain my control in a few areas, I began to realize I could do it in other situations as well. And so began my empowerment. As my ability to exercise control improved, it seemed to become less important because I realized I could do other tasks if necessary.

However, this learning process took years. It was extremely difficult for those around me. They had to be passive observers while the one they loved struggled to master a task. I can remember my wife sitting on the edge of the bed while I attempted to take off my shirt to get ready for bed. Initially it took well over an hour. Imagine the strength and love it took for her to watch me struggle without interfering. The restraint she showed is a great example of when doing nothing is really doing something. I’m sure it went against all her nurturing instincts. Nothing in this new life comes without hard work, frustration, failure, modifications and persistence.

 

This entire process begs the question what can those of us who have dealt with these issues do for the individuals who join our disabled community every day. What assistance and support can we provide both to help these individuals to minimize adjustment time, ease frustration and regain more control of their daily lives?

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Comment by Rich Fabend on March 23, 2012 at 17:58

Linda that's why we need each other and stand willing to help those just joining our community.

Rich

Comment by Linda Jane McLean on March 23, 2012 at 17:47

You are so right about the process taking years. Empowerment has to be nested. 

There ideally needs to be peers around who have learnt some of the tricks; who are activists; who won't take no for an answer.

I have said it before - and I will no doubt say it again:" engagement is the caterpillar: empowerment is the chrysalis: autonomy is the butterfly."

We need so many butterflies - people who have learnt the empowerment process and are willing to share their journey and their knowledge with others.  So much of it seems trivial...like taking your shirt off yourself. But none of it is.

Nobody wants to be dependent: everyone seeks independence. Why does the system we work in make it so incredibly difficult?

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