All We Are

Living It Up

A while ago I saw Milery Cyrus (aka Hanna Montana) being interviewed on Good Morning America about a photo shoot she had done which was appearing in some fashion magazine. To her credit she talked about the two hours of makeup preparation prior to the shoot and the airbrushing that was done to the photos afterwards before they were ready for the magazine. She concluded by saying this process would make any individual look beautiful and sexy. This was quite a mature, candid and astute observation for such a young woman. During my 34 years of teaching I was constantly trying to help students see themselves in a more positive light. When we are subjected to negative interactions in our daily lives we tend to wonder what is the matter with us. When in reality, we should be thinking what’s wrong with the other person. We are bombarded daily with messages of what the ideal image and lifestyle for us should be. Few, if any of us, can live up to these unrealistic expectations. The majority of people seem to be less than satisfied with their physical features. This is very evident when we look at the rise in cosmetic surgery over the past few years. As Oden Black pointed out in his last blog Love You. Love Me! “We look in the mirror and see deficiencies, which are compounded by everyday negative comments and messages we receive from those around us.” Our society worships youth and perfection. How many times have you turned on the television or opened a magazine to see a celebrity who has had so much plastic surgery they are hardly recognizable. There is an additional obsession for many people to look young and in shape, and many individuals take the shortest and quickest methods available to achieve this goal such as liposuction or dangerous fad diets. If I paraphrase Buddhism’s Four Noble Truths we can begin to see a way to relieve some of this way of thinking.

Suffering is due to desire                                                                                                         

Trying to eliminating desire                                                                                                      

Will lead to a life with less suffering

Several years ago I was seeing a psychiatrist who asked me if I could identify any positive things that had come as a result of my condition. After several minutes of thought, I said I had met some wonderful people, but could think of no others. He then suggested to me that I no longer had to worry about vanity. What a ridiculous statement! If anything I’m more vain. In fairness to him, like most of the doctors I deal with, he had little experience with someone with my disability. The point I’m getting at here is that most people in society have hang ups about the way they look and the way others perceive them. So, as individuals with disabilities we are not as different from others as we may think we are. We would all be much more content and enjoy our lives much more if we accepted our physical selves the way we are and allow nature and the aging process to follow their normal courses.

As Matt Nathanson has written in his song “All We Are”

I kept falling over
I kept looking backward
I went broke believing
That the simple should be hard

‘Cause all we are we are
All we are we are
And every day is a start of something beautiful, something real

All we are we are
All we are we are
And every day is a start of something beautiful, beautiful

Getting It Right

About five months ago I was asked to blog on a website in Australia. So, I downloaded a clock onto my home page which would tell me the time there and another gadget to let me see what the daily weather was like. At times I publish blogs I’ve used on my own site with minor adjustments. I thought it would be very interesting to write on the blog in another country but I realized there might be some different perspectives once in a while.  There have not been any until my last blog entitled Patience and Persistence which reflected my harvesting a wild turkey the first since my disabling accident 11 years ago. Imagine my surprise when my latest post was introduced by the following two paragraphs written by the blog editor:

 Hi everyone, welcoming you to another blog from Rich Fabend. Just a side note we in no way encourage the use of guns or promote hunting or anything of the sort. In Australia there are tight rules and restrictions and definite no-nos about the use of guns. I in fact love turkeys as I think they are very fascinating creatures.  However I think that there is a great lesson and moral behind the words that Rich  has presented in his blog posts here, and that is about patience and adapting to change.
 … He lives in America and it is currently Hunting season there, thus causing the theme of his posts. But from his posts we can see that disability is a daily thing, however if we learn to live with it in our own way, it moves away from something hat runs our life to something that is part of our being.

When I first started writing about hunting I fully expected I would get responses from individuals who were uncomfortable with those actions.  I also thought any issues would originate in the US and I believed these blogs would be well accepted in Australia. I have absolutely no problem with the comments that were written. Personally, I believe the United States should have stricter gun laws. However, the more I thought about it the more I realized my own misperception of Australia had been formed from watching  movies like Crocodile Dundee, Australia, Quigley Down Under and the television exploits of Steve Irwin the Crocodile Hunter. Obviously, my concepts were inaccurate. I guess that’s the equivalent of people believing that New York State is one huge megalopolis resembling New York City.

While our views of other countries and cultures may be very limited, one thing is perfectly clear to me and that is that, as individuals with disabilities, we are a subculture of our own regardless of where we live in this world. We are brothers and sisters united by our struggle to deal with the profound challenges that confront us every day. I believe, in many ways, we have more in common with each other than we have with many of our able-bodied countrymen. When we communicate there is an unspoken acknowledgment of what our daily lives are like. We immediately understand what each of us is dealing with and feel no great need to explain it.

I orginally started my website www.handihelp.net so we could communicate with each other and more particularly share ideas, shortcuts and equipment that we have developed to reduce the frustrations we face daily. Why should an individual joining our subculture not be able to have ready access to the things that have already been developed which would improve their quality of life? I am speaking here primarily of equipment but I also feel strongly that we should share the mental processes, attitudes and beliefs that have allowed us to adjust to situations that life has chosen to place us in.

So first I should apologize to the people of Australia for the foolish beliefs I had about their country. More importantly, I think we of the world’s disabled community should make greater efforts to share our thoughts and information which will enable us to live more stress-free lives.

“Nothing Burns Like A Quad”

I looked at my nurse and asked her if she just heard what I heard? She said she did. It usually takes me anywhere from 2 to 2 1/2 hours from the time my nurse arrives until I’m in my wheelchair ready for the day. We often have the television on and watch Good Morning America, Dr. Oz and then The Doctors. Besides being quite entertaining the programs are also rather informative. The quote I had just heard was from a commercial for a local business which sells wood burning stoves, fireplace inserts, spas and pools. The statement was included in their advertisement for a line of stoves with the brand name Quadra-Fire.  Having quadriplegia myself, I am well aware that “a quad” is often used to refer to those of us with this disability.  At first I made some jokes but, as the day wore on, the statement really started to bother me. How could anyone be so insensitive? The more I thought about it, I began to realize that many people are oblivious to the special needs community. Rather than call the store and complain, it seemed to me, that it is much more important to EDUCATE society.

When I go out in public I consider myself a “Special Needs Ambassador”. I try to act that way all the time. Each of us is a role model for “our members” whether we want to be or not. The entire time we spend among the public we are being evaluated by others whether we want to be or not. If my premise is correct, then we must constantly project what we would like others to perceive about all our brothers and sisters. I believe my actions and behaviors should reflect the problems and frustrations that are part of living with a disability, as well as, how to cope with such challenges. I have no desire to be felt sorry for or pitied I just want people to see and understand the reality of having a disability.

Last week my wife and I went out to lunch. The restaurant was quite crowded and probably it would have been easier to go somewhere else, but then why should we.  I navigated through the narrow aisles which required some people to move a little and rolled up to an empty table. I am a big man and have yet to find a restaurant where my knees will fit under a table. I have a tray which fastens to my chair but causes me to stick out into the aisle a little more. My wife brings my own utensils, drinking cup and shirt protector (aka bib). When my meal came she had to help me get the burger in my hand. As I eat I will inevitably begin to lose control of a sandwich and some of it will fall on my chest.  The last portion must be eaten out of my hand because I cannot let go of it. Likewise, when my leg bag needs to be emptied we do it discreetly but do not isolate ourselves from others. Hopefully, some people will begin to realize the implications for a person with a disability.

Applying a few of the 10 Simple Principles found on ThisAbled website to this idea

Believe that you as a person with a disability are equal in value to the people around you.
• Believe that you have something society can benefit from.

• Understand that your disability makes you unique not different.

Do not let others define your goals or measure your success.
• Educate the young

I would like to modify the last principle above to include   EDUCATE the rest of society through our actions and behavior. When I was in the rehabilitation hospital I heard people referring to non disabled individuals as TABS (Temporarily Abled Bodied). We can help TABS understand that life is not as safe as many believe but involves risk and at best is unpredictable. Hopefully, able bodied individuals will begin to realize that they or someone they know could join our group at any time.

Talking to a 6th grade class

The Power of Knowing

Finishing the marathon in 1983

What attributes lie within you? Have you ever thought about that? In 1983, a few days before my fortieth birthday, I ran a marathon. For those of you who may not know, that is a race of 26.2 miles. I decided to do this because I wanted to show my 13 year old son you can do anything you set your mind to do. It just about did me in; I could not talk when I finished, but I did it. However, I never ran another marathon.

A few years after my injury, I started talking in local schools about inner strength, commitment and positive attitude.  After one assembly a young student named Tyler Kellogg came up to me and said I had inspired him, so he had decided he was going to run an Ironman Race. A traditional Ironman race consists of a 2.4 mile swim, followed by a 112 mile bike ride, and then a 26.2 mile run.  It was a major undertaking for a 17 year old kid. I thought to myself “Good Luck.”  We kept in touch while he and his Dad, who had decided to do the Ironman too, were training. Neither one of them had done anything like this before. Not only did they do it, but Tyler was the youngest finisher out of the 2208 who finished the race.  Roles had now been switched and Tyler had become my inspiration. Now when I struggle to do something, I try to remind myself of what Tyler did just because he had the desire.

I have thought a lot about these two events for a long time. I have come to the conclusion that the benefit of accomplishing feats like these lies not in the accomplishment itself but rather in the knowledge that you can, when you want or need to, marshal all the physical and mental strength that lies within you in an effort to attain a goal.

We have all run our own “Ironman Race.”  The demands placed on us by our disabilities are far more difficult than the stresses and strains experienced during the most punishing athletic event. Even the most grueling challenge is limited in time (Tyler finished in 14 hours, 36 minutes, 25 seconds) and there is always the option of dropping out if need be. You cannot say that about a disability. So understand what you have already done and are doing everyday. Know the strengths that lie within you. And if you remember this you can draw upon those strengths when needed. That is the power of knowing.

Tyler helping me start kayaking again

Tyler & me at his high school graduation party