An experience with a girl at a dance Feb. 2003 is what brought me out of my shell, led me here. This is an essay I wrote about it early this year. Here is the story; finally you get the full truth.

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Unleashed

I sat, as always, and waited in the driveway outside our house for the electric lift to load my brother and his wheelchair into our van. I looked up, above the power lines, between the oaks and pines, and stared at the moon. Half cloaked in blue, the lonely, chrome cold moon lit me, and shimmered behind my eyes. I did not want to roll into that van, did not want to go out tonight.

It had been a very exciting, depressing, bizarre February. Only a week before, I had been below a marble eagle at the federal courthouse in Montgomery. It was the culmination of my campaign to force Alabama Medicaid to stop ending nursing care for people only because they turn age 21. Finally, after two years of 20-hour days working to create media, legislative and legal pressure, I had gotten Medicaid to extend coverage for a limited number of Alabamians, starting with me. About a week before I was to turn 21, I went before a federal judge, a settlement to extend care was approved, testimony called off. It was over. I would be safe, and the media had gathered at the courthouse steps to document my “victory,” to interview the “David and Goliath” hero. I was interviewed by National Public Radio, the Associated Press, the Mobile Register, the Mobile NBC affiliate WPMI, and more. I loved the opportunity to explain my cause to the public. I was exuberant, impressed with myself, the largeness of the accomplishment, excited by the ripple effect it all may create and where it would lead me next. But beneath the light, I was scared about all those left behind with no care. And in my personal life, fear and melancholy stalked.

“This isn’t really a victory,” I told a television reporter, a happy man from WSFA NBC TV, Montgomery. “This is very limited. There are still so many suffering and dying without any care. This is only the beginning.”

The reporter smiled his smile. “Isn’t this a dream come true?”

I smiled. “No, a dream come true would be if I never had to come here, never had to worry about the state cutting off people and leaving them to die in the first place.” What a dumb ass. They wanted a front-page fairy tale. They’d get their story of triumph, but only before I explained that it’s not that simple.

The cameras and notepads eventually folded, my pro bono lawyers went to get final details of the new extension program, and Mom and I got back into the van to begin the drive home down I-65, back to my life half-cloaked in blue. Again, I go from Superman to Jimmy Olsen overnight. I was upset. “If this is victory, I wish I’d lost.” I felt I’d won safety but nothing to help integrate myself or live life. I was a hermit again, but without media or an immediate problem to occupy me behind my black fortress wall of electronics.

Now I was in the same blue shirt and red tie I was wearing that day at the courthouse, waiting outside the van to go to the Spring Hill College Mardi Gras ball with my younger brother Jamie. I didn’t want to go. “What would I do there? I can’t really do anything there. Since I’ll spend the dance alone anyhow why don’t we just stay home?” Jamie and Mom were going. I had no choice. It was my turn to load into the van. I got on the wheelchair lift. Mom hit a button. The lift buzzed up. I rolled into the van.

Soon, we were there. Moonlight shadows rippled over my moving frame as I chopped over downtown cobblestone sidewalks. I entered the dance. I didn’t know the names of but two people there. I quickly took position in the corner near some tables, planning to hunker down behind my shell for the long, painful night as an abandoned border island in the waves. I thought that, like always, I’d quietly observe and think on the scene, an invisible mental panther on the prowl, my gaze weaving through the human jungle. And I’d plot revenge against Jamie for dragging me here. That was a priority. He would pay.

“Aren’t you going to dance?” a guy asked me. The band banged out Puddle of Mudd’s “She Hates Me.”

“No, no.” I said. I didn’t feel like wheelchair dancing, a new art I wasn’t sure how to pull off, and feared would seem pathetic.

“What?” The guy didn’t hear me.

Successful verbal communication isn’t likely for me at a dance. This was exactly the kind of chaotic environment I did the worst in, hated and wanted to avoid. Yes, the retaliation against Jamie would be legendary in its brutality. It would come when he least expected it, and would make Godzilla’s stomp through Tokyo look mild.

Then, everything changed.

A beautiful, raven-haired girl broke from the crowd. She stood in front of me. Her eyes locked with mine. Her sparkling, energetic face mixed an angelic look with a gleam of female mischief. She whirled around toward the dance floor and, smiling, shot me a backward glance. I was stunned, and hesitated, not sure what to do. She waved for me to come out. “Come on,” she said. I slammed forward, rocketing after her. In seconds, she had loosed me and pulled me to her from the corner I had planned to spend the night in.

Before I fully understood what was happening, I was dancing with her. If she wanted me to dance, it must be okay for me to dance. I had to make up how to dance in a wheelchair from scratch really quick. I would cut right, cut left, cut right, cut left, and sync my rhythm to hers exactly. I’d blast forward and then jam back to lift the front wheels off the ground. I’d do a spin move.

She smiled deeply at me and shook to the beat of the music. Her shiny wet hair brushed back and forth on her nude shoulders. In her tight, strapless faint pastel blue party dress, she moved freely, the life-green Mardi Gras spotlights playing up and down her body, caressing her shape.

Her happy glow melted the fear, the anger and the pain. All the other dancers disappeared. It didn’t matter what it looked like. I didn’t care I couldn’t talk to her over the music. We communicated more without speech than is possible with words. She would often touch my arm, and hairs stood on end. We stayed together. She was close to my height; our eyes locked comfortably. As the clock struck midnight and I turned 21, instead of being in fear, this was happening.

The band played “Grey Street” by the Dave Matthews Band. They were only a four-piece band, but I heard all the deep violins and horns. I sang to her.

Oh look at how she listens
She says nothing of what she thinks
She just goes stumbling through her memories
Staring out onto Grey Street.

She smiled even wider. “You know this song?” She laughed.
Drink deep the oasis, I thought. This may never happen again, or is it happening now? The silver lights strobed, and she flickered in and out of view.

We danced together for two hours. Then, in a voice both husky and soft, she apologetically said goodbye. She was gone.

Back in my room alone, on the floor beside my bed laid my tie, and a little multicolored plastic butterfly, a decoration from my birthday cake. “Wow.”

Weeks passed. I knew I wouldn’t see her much, if ever again. She was the subject of a romance story she was completely unaware of.

One March day I rolled down my driveway. I breathed in the spring green air. I was alone. It was okay. Shyness and fear has sloughed off, Pandora’s box now opened; I now go out and dance at every opportunity. The chrome-shine of the moon was visible even in the noonday sun. Something on my right caught my eye and I smiled. A butterfly flew over the yard and away.

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Nick

Nick,

That was extraordinarily beautiful and moving. I hope everyone reads it who comes here. They can learn more about the real reason for this forum from your post than anything I could write.

My son Teddy turned 21 in July, and he too wants a life like you. I do everything I can to provide him the opportunities to have the life he wants. But sometimes it is SO hard - it is not as simple as wanting it when so many barriers are in the way.

Your barriers are constructed from people who do not understand. Teddy's barriers are too. Nothing is not possible. But nothing is possible in a vacumn. And sometimes the vacumn we live in seems cavernous.

I wish I could snap my fingers and make your life better. I wish I could snap them and make Teddy's better. The deep ingrained prejudice people have against people with disabiltiies rears its ugly head here ocassionaly - I hope this place enlightens people so that somewhere there is someone who will face one less barrier.

I welcome the seemingly rude questions as it hopefully gives me the opportunity to open the door just a tiny bit and let in the light. What you write here may not help you, and what I write here may not help Teddy, but I am confident it is helping someone somewhere - and sometimes that just has to be enough until the next opportunity.

You know I think of you almost daily Nick and want for you what you want for yourself. I wish I could tell you the day will come when it will all happen for you - but you and I both know that doesn't always happen. People we both know have died while waiting for the light.

Susan

That was a wonderful essay Nick. I'm glad that you are able to go to dances and enjoy yourself. I'm not much of a dancer myself, but I love to sing at the temple. Hats of to you bro.

If you can't use your hands how do you move your wheel chair & write things in here? Sorry for the dumb question...just curious. I have a disability too. Not like yours but disabled just the same.
Guy

I have enough thumb movement to use a trackball mouse after someone puts the mouse in my lap. i move my trackball and click letters on my onscreen keyboard to type. my muscles are weak and that's my disability. i have not much movement but some, and no loss of feeling.

Nick

I feel sorry for you. My little sister has downsyndrome and is 6, 7 this month. She cannot talk, cannot tell us anything in anyway and cannot learn its wrong to hurt people and bite people. She does it all the time. How ever everyone here in the UK makes exceptions for here. We were in an electronics shop when she grabbed a key board and some computer games and flug them across the room. She always throws things of the shelf in a shop if it looks interesting. How ever they have always been nice and not charged us for it. She has stolen things a couple of times. Left shops with them and as long as we take it back they do not take it any further.

Dear annonymous,
What you are describing (hurting and biting) is a an anger problem - not a Down syndrome problem. My son who is now 21 had the very same problem until he learned to talk. He didn't talk at all until he was about 4. He almost had to leave school because of biting. What helped him the MOST was to learn sign language. In the beginning all he used was sign language. Then he started to use sign language and talk a little. Now he talks A LOT and uses sign language a little.

He was very hard to teach anything. He ran away from home a lot -and moved very quickly. I had a fenced back garden for him - but in a second of looking away he would run off. I finally got him a pager. When he was outside playing (and I was watching) and it was time to come in I would page him. The pager would vibrate and he would come in. So then when he would run off - the first thing I would do is page him. Most of the time he came right home. Once when he was older and I was at my wits end he told me " I not lost mommy, I here" and the truth was he rarely was "lost" I just didn't know where he was. He still does this on occassion- but now he carries a cell phone.

My son cannot read at all. This is extremely frustrating to him. So I did teach him to "read" recognize every single sign he encounters in his life. So although he cannot read - he no longer feels quite as badly. But if he could do anything- I bet he would say he wants to learn to read.

My son cannot speak clearly. This is my biggest frustration. He tells me things and I just do not understand the words. If it is a new word he has heard - unless I know what the word is or recognize his pattern of mispronunciation - I am lost. I feel so bad when he tries and tries to tel me something and I just do not understand.

Your sister can learn. I know it. You just have not found the right way yet.

Does she go to your local school or a special school? What kinds of things are they doing for her in her statement?

England in many ways is a much better place for a person with Down syndrome to live than the US. I found that the 3 years we lived in the UK we were without question always welcomed. I felt the country as a whole was far more welcoming of people with learning difficulties (we call that mental retardation in the US!!! ugh!) But I also found that England tried to short change my son academically and had little expectation of him. what he gained in self-esteem in England - he lost in educational advances.

There is a really good Down Syndrome Association in England. They have conferences every year They have a lot of books published - including some on using sign language. In England there is actually an easier form of sign language your sister could use that is not used in the US - it is called MAKAT0N - or something similar to that.

What little you have told me of your sister I am sure she is one little angry girl who wants to communicate to you - but she just doesn't know how. The first sign my son learned was MORE. You make an O with all your fingers on both hands- and then you tap your thumb/index fingers against each other. We started with small candies (M&Ms) . I gave him one- he wanted another - he had to sign more. Lots of tears in the beginning, but he eventually got it. It was like a window opened to his world.

Tell me more about your sister.
Susan

I suppose we all have our problems to deal with. My little sister who is 20 now, was a perfectly normal girl until last year when she joined a cult. They spend most of the year in India at their headquarters and then come for a few months to Canada. My sister doesn't even want to see us or spend any time with us anymore thanks to all of the brainwashing she underwent at the hands of the cult-leader. She is a completely different person now. I suppose what happend to her has made me into a bitter person now. I hope that one day she will remember that her family still loves and cares for her and leave the cult.

Clay,

That is really hard to deal with. But if it is any consolation to you- many young people join cults - anbd then leave them when they mature a bit. I hope your sister does.

Susan

it is not anger. we know when she angry she pushes us away and doesn't bite bu pinch even more. She is laughing when she does this. She thinks its a game and when she finally calms down it is better. She has autism as well I believe. They are trying to get her to speak using flash cards of things she like and trying to teach her and giver her the things she wants. She eats hardly anything but what we call here 'ready brek' for breakfast and chicken nuggets and things for the rest of they day. She will eat some other things aswell that are good for her. She does go to a special school.

It is really really rare - in fact I have never heard of a case of autism and Down syndrome. The fact that she laughs does not mean it is not anger- if she laughs after or even during these acts- they are a release and laughter would be a logical response.

Flash cards could help- but are they trying to get her to speak or sign? Signing is much easier than speaking for a child with Down syndrome.

HAs your family considered inclusion? To me inclusion is the way to get a child to behave and speak quicker than anything else. Kids naturally want to be like their friends.

I used to live in Norfolk- where do you live?
Susan

i won't give that out on the internet anyway but she is learning. My family were told she may be slightly autistic. ANyway she is learning. Its a phase. She had a hair puling phase and now its biting. She does it because my two brothers like to fight all the time and she copies them.