Wednesday, April 22, 2015

Kids - The Best Medicine

When you want to know the truth, ask a child.  (Unknown)

My disability (triple amputee in a wheelchair) is a very visible one.  It is noticed by everyone who sees me.  Reactions are not so subtle and typically range from pity, shock, awe, fright, and relief it is not them.  Many wonder what happened to me.  It is quite normal to react to something out of the ordinary.  I react too.  The problem begins, however, when assumptions are formed based on a first impression or appearance alone.  

Assumptions about me and my life are routinely made.  These assumptions can be hurtful and upsetting.  There is an enormous gap between these assumptions and the reality of my life.  For example, despite how I look, many would be stunned to know that I actually work, drive, have no nursing care, have no specially modified home, and do not exist on public assistance.

Young kids, however, make no assumptions.  They are genuine and honest.  They ask questions no matter where they are or who is listening.  For a young child, it is quite normal for them to stare.  When they do, I smile and most always get a smile back.  It is okay for them to ask, "Mom, what happened to her legs?”  If they ask me directly, I offer an honest answer which most kids understand.  I simply tell them, “God made me this way when I was a baby.”  Most every kid pauses briefly as if to think that over, and then goes on to ask, “Why?”  I tell them, “I don’t know why, but when I get to Heaven, I am going to ask.”  This is usually all it takes.  A 4-year-old once said to me, “Maybe God just made a mistake.”  Well, who knows … maybe He did.  What an innocent and refreshing conclusion.

Young children have not yet formed any assumptions of what I can or cannot do.  They simply go on as if I can reach things, lift things, tie shoes, put hair in a pony, push them in the swing, etc.  They see my wheelchair as a cool toy.  It is quite rejuvenating to be with kids - they see me as I see myself.

Sadly, some parents whisk their child quickly away or try to divert their gaze, their attention, and their thoughts.  This is, by far, more uncomfortable than the question itself.  When this happens, it makes me feel diminished, like an object that needs an explanation.  I feel bad for the kids who get treated by their parents as if they said or did something horribly wrong.  An educational opportunity missed.  After all, they did have a valid and reasonable question.

I don't mind kids asking me what happened on our first encounter, but it is offensive when adults ask.  It is not appropriate - no more appropriate than asking why someone is blind or fat.  I expect adults to have more etiquette than to blurt out a question like that.  That kind of information is offered as friendships are formed, not just because we are in the same grocery line.  If that were true, I would just wear a sign.

I know it is very awkward and embarrassing for parents when kids have no filter and they ask pointed questions loudly.  It is hard to know how to handle such impromptu moments.  I truly understand.  As you have your conversations later in a more appropriate setting, keep in mind that it is not necessary to know how a disability happened in order to teach the appropriate behavior when encountering a disabled person.  Kids often have it right - they treat a disabled person just like any other person.  They may ask a question or two about the packaging but it ends there.  I love kids.

Please feel free to ask any questions you would like answered in future blogs or submit comments.  I would love to hear from you.  

Monday, April 13, 2015

Introduction

This is my first blog so as a bit of an introduction, I was born with no legs and no right arm during the thalidomide era in the 1950s.  Some say it is easier to be born an amputee than it is to be a traumatic amputee later in life. Both have advantages and disadvantages but no matter the timing, being an amputee is not easy or fun. It requires an enormous amount of stamina, courage, and determination. More than a few amputees, not yet used to their leg being gone, have fallen on their face when getting up at night to use the bathroom. I can hear the giggles now. It's okay. Light-hearted humor is an absolute necessity when traversing through an able-bodied world. Given a choice, however, no one would ever volunteer for any type of disability. Basic activities of daily living bring new challenges. Some days, these challenges are overwhelming and the will to move forward strained. However, quite simply, there is no alternative. One is forced to adapt and find new ways to do most everything. 

Being a triple amputee, I wore artificial limbs for about 20 years. I used crutches and felt like I was always walking on bendable stilts. Scary most of the time but especially in the rain, snow or ice. It was not possible to carry much of anything, not a purse or books for school. It was impossible to carry groceries or children. I thus decided to toss my artificial legs and use an electric wheelchair. Wheelchair usage brings an entirely new set of freedoms and limitations. I could now "walk" all over an amusement park carrying a beverage, but the bathroom and rides might not be accessible. I need a hand rail on the right side of the toilet (as you sit on it) and this need poses great challenges. Being a triple amputee in a wheelchair often elicits pity, patronization, and unneeded offers of help. There will be days when the unsolicited good intentions of others will make you want to scream.

Always remember, however, that people are mostly good intentioned.  They just perceive that help is needed - they simply can't imagine themselves with your disability.  It is never a good idea to be rude to anyone offering help. Doing so can lead them to believe that you are totally maladjusted to your disability, that you have a bad attitude, that you are rude, and that you have poor coping skills. Being rude or short will cause far more damage to the public perception of the disabled than if you simply and politely decline an offer of unneeded help. After all, it is comforting to know that there are lots of willing helpers out there if needed.

As an amputee, it is possible to lead a full, happy, fulfilling life. Not only possible, but probable. It is possible (and probable) to have a spouse, a family, sports, hobbies, and a career. You will find new ways to do ordinary tasks. You will appreciate the smallest things that many people take for granted. Your priorities in life will change. Your perspective will change. You will be surprised at the strength and perseverance you have inside.

You won't be cheery all the time. You don't have to be; don't expect to be all the time because... face it... being an amputee is not fun. I choose to have these moments privately. I choose to concentrate on the things I CAN do and give little focus on what I can't do. I do my best - that's all anyone can do. 


I hope my website, blog and book (My Extraordinary Life) will help identify some creative ways to overcome physical challenges and "bad" days. And... remember... light-hearted humor is a great companion.