A quip that made the rounds when I was a teenager went, “I believe normalcy is vastly overrated.” We usually pulled it out when some adult complained about our bizarre behavior, behavior that we chose to do just to have fun and act like goofs. Our society is replete with what is Normal. There are normal I.Q. scores and normal test scores for College entrance exams. 120/80 is your normal blood pressure, 98.6 is your normal body temperature. Recently we have been treated to a number called a Body Mass Index that supposedly tells us if we are obese or not. There are normal FICO scores that tell the banks if we are good credit risks and even polls to tell us where we fit into our society as to our political or religious beliefs. How good is it to be normal? Arnold Schwarzenegger would NOT have a normal BMI. Bill Gates probably doesn’t have a normal FICO score. Mother Theresa, now Saint Theresa, would probably fall outside of normal religious practice.
We are inculcated with the belief that we must attain these normal numbers if we are to do well in life. We need at least normal scores for high stakes tests so we have a chance to advance to the next level. Yet Albert Einstein did poorly in school. Recently I learned that Rush Limbaugh flunked debate class in college. In some cases, normal is vastly overrated.
But for parents and grandparents, when they are expecting a newborn baby, the universal prayer is, “Please God let it be healthy,” or to paraphrase, “let him/her be normal.” There is a deeply rooted fear in all parents of having a disabled child. I know, I’ve felt it, eight times. My wife and I are the proud parents of eight wonderful children, four of whom are considered by society to be not normal (re: disabled).
Ken and Stephen’s problems first manifested themselves around the time they were two years old, they have Autism. Joe nearly died from a seizure on his first birthday and he is still dealing with the effects. Devon was already five when we realized he was basically blind in one eye. As a person who spent his entire working life caring for persons with disabilities, I spent many sleepless nights worrying about the future of my sons.
After their child is born, parents next move on to the fear of their child being hurt. This fear is especially exaggerated in first time parents. It starts when they begin to crawl, “will they bang their head into a table”, then onto walking, “will they fall and skin their knees.” Learning to ride a bike brings helmets and knee pads and fears of traffic. The parent of a special needs child faces all these fears and usually for a longer time period than the parents of a normal child. Most seven year olds know to watch out for cars when crossing the street, some mentally challenged persons take until their teens or adult years, and some never achieve this awareness.
Fear of injury to themselves or to others also impacts what parents of special needs kids will allow their kids to do. For many sports is a huge hurdle. “Can my child even do that” they ask? Coaches and parents try to keep the players safe but will often feel a heightened sense of urgency when the player has a disability. As a father and a coach, a Martial Arts instructor actually, I have felt the worry but been gratefully surprised when my sons where given a chance to at least try. The biggest revelation came with an injury Ken received. He got hurt, he got up, and the world continued to spin, just like when I got hurt as a kid and my mom was worried about me. Ken brushed off the injury, a hard fall at Judo class, and kept going. Stephen took a line drive to the head at a recent ball game. He kept playing, the ball was soft fortunately. And Joe crashed his bike into a car. He needed stitches and a sling but quickly recovered. Yep, my sons got hurt, reminds me of me in my younger days.
Normal is not something necessary. It is simply what the vast majority are able to do. Normal skills are inadequate to play professional sports or be a professional singer or actor. In some cases what is considered a disability is an asset. One company only hires persons with Asperger’s Syndrome to debug computer code. In their case, sitting for hours concentrating on line after line of computer code is tailor made for them. A Judo student I had in my class was born with only a partial leg on his right side. A handicap? It was a challenge for him with standing techniques but an asset when we did groundwork.
In my experience as a parent and a professional the biggest handicap that the disabled often face is well meaning Normals who want to keep the Disabled safe. They do not recognize there is such a thing as a Right to Risk and a Right to Fail. That only by pushing ourselves to our limits are we able to exceed our current limitations.
And that is something we all need to do.