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Essays on Civic Engagement

This Is Your Democracy

Piece One

Charlie Knight Springfield
Charlie-Knight

When I was in high school and diagnosed with epilepsy, I was told I should not date anyone.  If I did then we might want to marry, and if we married we might want to have a child. And if we did that, we would be ruining the gene pool.  It was made to sound worse than killing people.  I would be lowering the quality of human beings. It was like the thinking of eugenics that we exported to Nazi Germany. And my Aunt told my dad that I was worthless because she understood epilepsy to be a mental condition.  Later, my dad blamed me when my Mom got MS because he believed Mom got sick because she worried so much about me. 

Since then, I have loved and had to leave or try and turn each gal against me. I have had gals who come to me and want to be with me, and I have had to turn them away, saying I was a homosexual or telling whatever lie I could think of to get out of that situation.

I cannot express to you the joy of awakening with a lady next to you and watching the hairs on her smooth skin glisten in the early morning sunlight as you thrill to the soft movement she is breathing while sleeping.  I did not have sex but sometimes did have one gal stay over who wanted to have somebody with her.  So, she would want me to sleep with her on the mattress we put on the floor.  

I have cherished the times I would sit with someone and just watch nature around us or when Alice (the lady I talked about that we were friends, since childhood, almost like brother and older sister) and I would read in different spots of the room or maybe I upstairs and she down.  But we would just enjoy the presence of each other.  

Once I saw a wax display at the Mashantucket Pequot museum of a squaw and her brave building their sapling hut, and that has since then resonated with me.  This is what I call a good relationship: when you do things together and can be perfectly happy being in your own solitude while being within earshot should we want something or to share something. So much of my life I have wanted such a relationship. To care about someone and have them maybe also care about you.  But that was not allowed. 

I have not said this to many, but now I say it because in my 76 years of life I have met so many that are so hurt by society’s putting them down.

If I could be married and live with a woman, even just having an argument about who it is that will take out the trash today means I would be validated as an individual.  Or if she was insistent that I help with folding the laundry, it would still mean that I have a value in her eyes, and she wants me to be helping her.  I grew up as a farm family and dreamed of having a wife who could plow the north 40 acres in the morning and help me with the haying in the afternoon and somehow figure out what we might eat, even if we are preparing it together.   

One time a lady I liked dearly came to me and wanted to live with me and be a father to her children after she had an operation that made her unable to have more children. I had loved her since the first time we danced at a Grange youth dance in Cummington, MA.  But I was so afraid I would not be a good husband.  But to this day my heart skips a beat when I see a lady with the same short haircut that Mary had.    Yet even though I knew we could not have children the prohibition against my being in a relationship was so strong all I could think of was that it was my DUTY to not be so involved.  And the scariest part was that as much as I wanted to love her children Mary and Adam, I no longer had any idea of HOW you do that. I was so afraid I would mess up somehow and hurt them.  I could NOT take a chance of in any way causing damage or pain to the one’s I loved. Today I feel guilty for not being the father she wanted for her children from another relationship, and I often pray for Mary and Adam daily if not multiple times a day.

Now I live in a Single Room Occupancy apartment and I’m not even allowed to have a cat. When you are not feeling well the cat will notice and maybe snuggle up next to you or try and lick your face, etc.  The point is that it would be good to live with another living being that is responding to your feelings and sharing that you are important to them.

I do NOT think my story is unusual.  I think this constant pain and self-condemnation is something a good deal of humanity lives with. So, I want to share my story about what it’s like to live as a person who is considered useless, and how worthless you feel when that happens.  Somehow you believe that if you condemn yourself first, it’s not as painful as if you like yourself and then others condemn you. Then when someone says how much they appreciate you or like what you have said or done, you argue against that because you’ve accepted the view that you are a burden on society. (For me, anything that would contradict what my Father and the “professionals” told me, so it cannot be true.)

I want to share how a time comes when you find out you do not know how to love any more. That the very thing you wanted is not something you are totally unable to do. And how all of this presents a world view based on the assumption that you really have no value to society at all.

I want to express the frustration and pain of a life that in all intents and purposes ceased years ago. It’s just the physical body is still taking in oxygen.

Yet I am NOT alone.  Many live with this.  

In 1970 when I was an aid in a nursing home, I had a patient from Germany who grew up in the NAZI regime.  She was taught from the time she was a little girl that if a person could not contribute physically to society they should be killed as it was a sin for them to take up resources that could be better used by healthy able-bodied people.   So, every day she almost pleaded to die instead of being a burden to me and everyone else around her.

I thought her thinking was so strange. 

But here I am in the same position.  

I have not said this to many, but now I say it because in my 76 years of life I have met so many that are so hurt by society’s putting them down.  And it’s not just people with physical disabilities since if you are black or brown systemic racism may make you feel the same way.

So, I want to share this story in hopes that a light can be seen at the end of the tunnel for someone. 

In hopes that they will not give up.

In hopes that they will share the essence of whom they are with others and let those others be blessed.

Here is what I would say to all of us:

Ability

is not about the body
It is all about the ability to take 

the cards that are dealt to you and then

fashion them into a winning hand by how you play

the game.

It is all about the ability to perceive the good and the bad in others

and to opt to promote the good and to disempower the bad.

And in so doing make the road that is our life

better to be traveled on by those

that follow after us.

Whether

you have the guts

to take on that challenge

determines if you are disabled

or not

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