We Need "Special Needs"

10 Jul

My first week at camp was interesting. I love it, but it’s really challenging.  I have always been around people with special needs, so it wasn’t a culture shock. My brother has Downs syndrome,  and my dad and my best friend’s mom worked with them. Often, I try to hard to psychoanalyze people with special needs.  Are they happy? How do they process life? How self aware are they? There has been times when I have actually been jealous of my brother because he seems so content and full of joy. Maybe it’s not that ignorance is bliss, but simplicity is.

My brother Robert (age 20) last summer in Maine

This week I had an array of campers, all of them with multiple disabilities, some with some degree of of visual and hearing impairment and mental retardation. One woman was completely blind and deaf. It was hard to tell how much she understood, communication was extremely limited. She had an obsession with armpits and breasts and would hit my elbow in order to try to stick her finger in her armpits. Several were self abusive and would pick themselves till they bled or bang their heads on hard objects. The week was full of stress, mental and physical exhaustion, but plenty of moments of joy and laughter.  One of my campers, an older hispanic lady, would break into the macarana whenever you started dancing. Another followed me around, ecstatically grinning and high-fiving and always wanting to give me hugs. I got to help them swim, ride horses, go down the zip line, dance, paint, and make jewelry.

At the end of the week, I was so ready for them to go home, but it was sort of bittersweet. The parents came to pick them up, and one of the moms thanked the other counselors and I  profusely. She told us that we had no idea how much it meant to her and her husband to have just a five day vacation. Their daughter, (the huggy one who followed me around everywhere) was 21 and adopted and it was her first year at camp.

“I have a lot of miles on me.” She said, as her daughter jumped up and down, babbling sign language. She shared how it has taken years to teach her daughter even to put on deodorant. She has Charge Syndrome and no sense of smell or hearing.

“And she doesn’t even get it in her armpit! the mom chuckled, “She still tries to put it on her elbow. But four years ago she put it on her wrist, so she is getting closer. We rejoice at the little things.”

We laughed with her, but inside I was filled with emotion at the thought of that kind of dedication and patience in raising a child that never truly grows up.  I thought of my own parents and the sacrifices they have made for my brother. What kind of things does that teach you about life?

I know my own perception needs to be altered on a daily basis. So often I find myself responding out of humanistic thinking that a person’s value  is based on what they can contribute to society, that the mind is god over the heart. I need to be reminded that it is those who live as little children that are truly living. There is also something about taking care of people’s basic physical and emotional needs that takes the weight of my own complications out of my head. There is no room for them.

I am re-posting something I wrote in China after visiting an depressing orphanage and having my perception changed through in encounter with a child sitting in his wheelchair in the corner, forgotten.

The Kingdom Is Yours (From “All Things Are Becoming New”)

What do you see when you stare at the wall?
You are strapped to a wheel chair, unable to move.
You can’t control your own muscles, drool drips down your chin.
One eye is fixed on something in the distance, one to the side.
Thick black tufts of hair grow in all directions from your head.
What do you think? Do you know who you are, what you are?
Are you screaming inside, trapped in this body? How do you feel?
You grab my hand. I hold yours tight.
You look at me with those eyes, black as night.
What do I see?
You smile, like you have a secret you want to tell me.
And I get this sense like I have tricked.
I look into your eyes, and I don’t see rejection and hopelessness. I see life.
I get this sense like you have seen things I have never dreamed of.
I know, strapped in a chair in this room in this orphanage, you have been places I could never imagine.
The kingdom is yours.
Blessed are the poor. The weak. The meek. The last ones. The rejected.
You grab my hand tighter.
Who am I to pity you?
I am too strong. Too independent. Too beautiful.
Too grown up to see what you see, past the colorful wall, out the door, into the air, up and up.
The kingdom is yours.
You know it. You have seen it. You belong to it.
“What do you see?” I ask again, and you begin to grin.
I’ve had it all wrong. This world is backwards and upside down.
I see in your eyes, that the kingdom is yours.

I believe, as time goes on, I will realize even more, we need people with “special needs.”

“Maybe the last ones are the lucky ones, the ones who got this whole thing figured out. Cause when they go looking for something beautiful, they start looking from the inside out.” – Matthew West.

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2 Responses to “We Need "Special Needs"”

  1. Jeff Goins January 7, 2011 at 2:03 pm #

    Love this: “Maybe it’s not that ignorance is bliss, but simplicity is.”

Trackbacks/Pingbacks

  1. Help “All Things Become New” For My Niece Sierra « - November 28, 2011

    […] Sierra, like my younger brother Robert, was born with Down Syndrome. […]

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