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Normal Schnormal

Posted Feb 08 2009 12:00am
When I became an amputee, I was 16. I became an amputee because bone cancer destroyed the femur in the knee of my right leg. Losing a leg is a huge trauma. Knowing cancer has been, and might still be, in my body was horrifying. But do you know what hurt the most? The fact that suddenly I had no friends because I wasn't a normal teenager anymore. Normal can be, as in my case, violently ripped away from you and in others cases it is something you are born "outside of"; that's an important distinction because the change later in life can sometimes make adjustment harder because it seems like you lost something you had before. But in the end, in terms of how society treats you and makes you feel, it's the same. You are simply not normal. Back then, I didn't want to be different and I didn't want to be placed in a group that was separate from everyone else. The last thing I wanted to do was be part of a "support group" of other amputees. I rebelled against the word disabled and against the word handicapped. I would not even consider getting a handicapped parking placard for the first five years. I rebelled against the labels placed on me then and don't think of myself -- nor do people who know me -- as them today. All someone initially in this situation wants is to be normal again because the change that has happened to you makes you feel inadequate; inadequate because things you could do before it seems like you can't do anymore. "Seems" because, as I would discover over time, most of the things I thought I could not do I would find a way to do; some, like skiing, I would eventually do much better than I had ever done before I was "abnormal". Dependency is another reason you strive to get back to normal. It doesn't feel good to have become dependent on others for things you used to do for yourself. Independence and self-reliance are the first steps towards removing the overpowering obsession with getting back to normal.

But what is normal? When we say someone is normal we are saying they don't stand out; that they are not deviant. If you are normal you don't draw attention; unless or until you want to. If you are normal, you are able to participate; you are able to be competitive. But normal is not always a positive thing. Celebrities and other highly public figures bemoan the difficulty they have in leading a normal life or providing a normal childhood to their kids. Normal is used as a weapon against those society feel are outside some physical and/or behavioral limits of acceptability. This is especially difficult for teenagers. They are already highly susceptible to a strong need to fit in. Acceptance, friends, and being part of the group are powerful forces for teenagers as part of their normal development and socialization. This flavor of teenage angst is a favorite topic of many books and movies. A standout in this genre is Stephen King's Carrie. Maybe this contributes to eating disorders in girls. And then we have the incredible obsession with weight and looks in both genders.

A funny thing can happen on the way to getting back to normal. Those whose group you are trying to rejoin will hit you right in the face with a sort of "close but no cigar" comment: "pretty good...considering." What starts off seeming like a compliment ends up a barrier between you and normal that brings you not just back to where you were but puts you permanently in a separate but unequal group. That's the separate but unequal group of different or disabled. We all use this epithet. As in "you throw the ball pretty well...considering you are a girl." That puts boys in the group of "throw the ball well" and girls are in the group of "don't throw the ball well" where they should stay. Able-bodied skiers are in one group and those of us skiing on one ski, skiing blind, or paraplegics skiing on a sitski are "skiing pretty well...considering" which started to say the disabled skier was joining their group but ended up saying you have your group, it's different, it's not as good, and you will kindly stay there.

Disability has many negatives in society. For people who are disabled in some way due to a missing body part, a prosthesis is a way to "level the playing field" and remove the obvious physical differences that people focus on. People cannot immediately see that you are physically different so they act differently (actually it is they who suddenly begin to act normal) and you can interact with them more normally. It's like the elephant has left the room. Getting stared at is never comfortable; it is a constant reminder you are different and not fitting in and for those with a deformity, who are in a wheelchair or have some undisguisable condition, there is no relief from staring. Children can be pretty harsh and cruel to anyone who looks different. When I was 16 and had just had an amputation, because they found out it was from cancer, all my friends headed for the hills and I was completely shunned. In 1973 people thought you could catch cancer. But today they still shun peers with almost any disease because it makes that person different and because anything hinting at death is too scary to face. Today, little kids seem to think if you are missing a leg or have some other physically striking difference that the disability affects your hearing. Walking on the pool deck I constantly hear little kids yelling to their friends or their parents "what happened that that man's leg" as if I were deaf as well as walking on crutches. Individuals turn that on themselves when they feel inadequate. "The most difficult part of being disabled is coming to terms with the negative values I have internalised. I am disabled and I am trying to work through my prejudices about my own disability and others. My gut reaction was to deny that I had these feelings but denial does not allow me to come to terms with my devaluing prejudices," writes Jane Smith in Trying to be Normal.

Once you feel like you have "come back", for many if not most, there is suddenly this transformation into striving for super-normal. In my case, once I felt like I had more or less achieved my goal of "normal" I began to strive for what you might call over-achieving or just going way beyond normal and exceeding what people thought was possible for me. This is actually, well, normal. You knock us down hard and we will try to come back and exceed normal. In fact we will try to exceed you. Lance Armstrong, Michael J. Fox, Stephen Hawking and hundreds of amputees, and others with disabilities are very visible examples of this but hundreds of thousands of people whose names you don't know are equally obsessed with doing the impossible. They would resonate with the perhaps somewhat schmaltzy marketing slogan of "I'm possible". For the disabled who comes back the goal changes to striving to be different. Maybe 'better' but its only better in one small slice of life; not "a better human". This starts by finding something you can do at all. Doesn't matter what it is. It could be cards, it could be a sport, it could be intellectual. Disabled people are highly motivated and will pour everything they have into it. They focus, they work hard, they put everything into excelling and suddenly they find they are going beyond their able-bodied counterparts. For me, this sent me into risk-taking territory. Once I excelled beyond what two-leggers could do in one area, I wanted to push the limits in other areas. Like barefoot waterskiing. Why? Someone said "I bet you can't do that" and whenever someone said that, I responded big time.

Where does this fight come from? It has always been asked of me: was the personality trait to be a fighter there before I lost my leg. Not sure of course, but I didn't stand out before and I don't think so. Actually, at an early age like everyone else I worried a lot how I would handle any kind of crisis. I daydreamed of the major car accident scenario where I was not hurt. Would I help? Would I be a hero or would I cringe and withdraw? Is there something special, different and rare in someone's personality -- the core of how they operate and behave -- that sets one person up to snap back and get past normal to super-normal. If so, is it genetic or environmental or both? There are so many stories of incredible human powers of recovery, resilience, adaptability, accomplishment, excellence and strength that I believe this is actually normal human behavior under stress. Humans do what they have to do. If life is easy they may never know what they are capable of. But our organism, like all living organisms, is highly programmed to survive and if what it takes to survive is deal with the chemotherapy, learn how to balance on one leg, learn to eat without hands or whatever it is, we just do it. Many people who themselves did not think they were really strong, when severely threatened and challenged rise to the occasion and find what they describe as an inner strength that surprises them and everyone who knows them. Yes our personalities are a mish-mash of genetics and environment and experience. And certainly personality has to play a role in how we handle adversity. But I and others were completely unsure ahead of time, and shocked afterwards, at our capacity to fight back and recover from devastating physical and psychological threats.

I believe in the end it is about ability versus disability "Perhaps there is too much emphasis on disability rather than many people actually know what their abilities are?" asks Jane Smith. This is a really good question. Because I believe people faced with a disability or some kind of disadvantage, like the sightless person whose sense of hearing magnifies, test their abilities more than anyone else and they push past what before seemed like limitations. The most gratifying moment in the recovery and rehabilitation of someone initially taken down by a disability is when someone considered able-bodied says they cannot compete with you. If feels like "you have arrived". And the confidence that instills in you spreads throughout your entire personality and everything you do giving you courage, fortitude and happiness. This is the ultimate goal I wish for everyone faced with a disability, a personal crisis or any life challenge. Fight back, find a way to win even on something small. Find a victory and build on that. Build and build to the point where you have found a place to excel beyond those that are not disabled and suddenly you are there. You are back on a level playing field and you will be happy. Good luck.
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