This I Believe

Ken - Gamerco, New Mexico
Entered on May 8, 2006
Age Group: 50 - 65

this i believe…

Why I Hate The Invisible!

By Ken Collins

29 years ago today, I was waking up at home after I ran head first into the side of a parked car while riding Pat Moore’s snowmobile by Summit Lake, Oregon, on December 31, 1976 at 4 a.m. My friends from Oakridge, Oregon, said I was going full speed when I hit the car and was catapulted from the snowmobile to the side of Bob Brewers Ford Pinto..

On impact, I broke my left jaw below my chin and rammed my right jawbone through my ear canal, separated my skull completely (cap fracture), shattered most of my teeth and fractured a rib. In the hospital the doctors couldn’t set my jaw for two days because of the brain swelling.

My hospital records show that I was in a Posey jacket and wrist restraints all the time I was in the hospital to keep me safe and secure. I was kept safe and secure in the hospital until I started to get loose (3 times in 6 days). One of those times I was found urinating in a planter in the hallway.

For my own safety, I was sent home with my family who were told if they couldn’t handle me then put me in a nursing home. Luckily my family spared me the fate that awaits many young people who sustain these types of injuries: long term confinement to the nursing home or state institution unless they have good insurance, but when that runs out and when they become “poor”, many people will be forced to have the government pick up the tab.

After they go on Social Security Income (SSI), they will become eligible for Medicaid, which will pay for long-term care in a nursing home or institution if Medicaid home and community-based services aren’t available to them in their state. These services are critical if the person with a disability wants to go back home and try to get on with their lives.

This new life also comes with having to survive on $498.00 a month Social Security benefits to pay for shelter, food and whatever else they can afford. When they are lucky enough to have a long work history they will go on Social Security Disability Income and make more, maybe $600 to $900 a month. What kind of life can you afford on this income?

Why is it that people with disabilities have to beg Congress just about every year not to cut Medicaid, food stamps and other programs so they can survive? They say they care. What people say and what people do are two different things: that’s why I hate the invisible!

Every night when I would go to bed and close my eyes to sleep these pictures of people, places and objects would float by in front of me. They were like negatives of pictures just floating by. Faces of people looking at me, pictures of people setting or pictures of several people setting or standing. It was very hard to sleep because of these pictures and when I slept I didn’t dream. This went on for about five years, and it took another five years before the face of the man on the other side of my eyelids went away when I closed my eyes.

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end. The struggle and turmoil caused by brain injury is often times invisible: that’s why I hate the invisible!

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like and now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do today. At night when I sleep I can dream again. It took me 25 years before this was possible.

To look at me now, 29 years later, you would never guess that I have had such a difficult time along this journey. I have faced many of societies barriers, most of these attitudinal. Attitudes are invisible and draw invisible lines that keep us from becoming equal members of society: that’s why I hate the invisible!

People with disabilities are often referred to as “invisible” because we don’t have the means to be heard. We don’t have the money to pay a lobbyist to hang out at the capital. They say: “we need your input” but when we offer this it seems disregarded all in the name of “health and safety”. This is both unwise and foolish.

Last week, when I was doing job development with a 48-year-old man who has a brain injury and a good work history, and I ask the manager if they were hiring. She has worked with our organization in the past and has hired some of our consumers before so I consider her to be a lot more educated about hiring people with disabilities than most in our community. As I ask her about hiring Robert, she announced to me that she doesn’t have any opening right now but, “that I have worked with people like that before” looking straight at Robert as if he was invisible: that’s why I hate the invisible!

Didn’t she see his shoulders slump when she uttered those words? Didn’t she see how he looked at her after she said what she said? Doesn’t she understand that words can cut deeply just like a knife and cause unseen pain that reinforces the stigmas and stereotypes we most overcome if we are truly going to become equal members of our community?

Invalid and invalid are spelled the same, but have two meanings. These words perpetuate the stigmas and stereotypes people with disabilities must wear. Stigmas and stereotypes are invisible: that’s why I hate the invisible!

Many of my friends use wheelchairs to get around because of accidents, injuries and illness. When we go shopping in stores or go out to eat at restaurants something that usually happens is the clerk or waitperson will ask “me” what “they” want? Sometimes they speak louder when they ask them what they want. I guess because they can’t walk that means they can’t hear either?

How often do we hear someone call someone or something “retarded” without regard to what they are saying? This phrase is despicable and degrading to people born with mental retardation and yet we hear the “retarded” phrase just about everyday. There is a very good chance that you use this word as part of your own descriptive vocabulary.

When people with disabilities and advocates try to educate people in our society and you about how this word should never be used because it hurts peoples feelings and is degrading we are faced with indifference. Indifference is invisible: that’s why I hate the invisible!

People with disabilities want to live just like everyone else. Honor, embrace and value our experience and knowledge. If you hear someone call someone or

something “retarded” speak up and educate them about how degrading that word is! If you see someone making fun of someone who has a disability speak up and tell them not to do be so ignorant! Don’t be afraid to speak out because nothing gets done when you say nothing and are invisible.

They say accidents, injuries and illness will happen to anyone and they are waiting to happen to you at any time. People who don’t wear helmets when they ride their bike or don’t wear their seat belts when they are in motor vehicles will become the new members of the disability community and will fall victim to humiliation and ridicule that awaits. Before my injury I was a pro baseball player and everyone’s friend. After my injury, when I would see the same people in the community – they would go the other way.

As accidents wait to bring tragedy, misfortune and chaos into your life they are invisible. We only see them after they happen – after it’s too late – and you become disabled: that’s why I hate the invisible!

Don’t become invisible! Wear your helmet and buckle your seatbelt, before it’s too late!