Dancing with the Handicapped

The White Saddle Band, one of the best-known Country Western bands in the Chicago area, was 
playing for my old circle of friends called Special People, a support group for the handicapped.  I

hadn’t danced in the last four years since the death of my husband Tom; he and I had loved Country

Western dancing.  Tonight something in me felt pulled to give this a try.

I hadn’t been involved with Special People since moving from Des Plaines to Oak Park, farther away from their meetings. The dance brought back memories of the hard and frightening times after Tom’s death. Supporting myself and putting our two teenagers through college, while limited by my back curvature, was a scary situation. This was why I’d sought out the support group for the handicapped., looking for any helpful ideas.
My attendance was irregular with the group as time was tight and the situation of the others was often different from mine. I was able to look almost normal and function fairly well, with my limitations hidden, and so I felt “borderline handicapped”. It was actually a new step to publicly see myself belonging with this group. Maybe I was coming to the dance alone to keep my association with the handicapped anonymous.
They were quite a mishmash of humanity. Every kind of disability, ailment, and limitation imaginable were all brought together by suffering and needs. Poverty, loneliness, discrimination, and the frustrations of trying to do minimal daily activities were constant experiences for most. Some were subjected to emotional abuse or felt harshly judged by others. Most all felt the temptation to feel inferior. All these kinds of daily experiences united this clan of the Anawim, God’s beloved poor. (Zephaniah 2:3 “the humble of the earth”)
The program was directed by a fine and competent man named Ron. He had survived polio when he was young; he was now maybe 45, about 5’3” and verythin. Sometimes he had to hold his hand to his throat to strengthen his vocal chords in order to talk. He drove a car capably, but walking was difficult. His parents were dead and he lived alone, doing graphic artwork and directing this group Special People to supplement his small disability income. Ron was intelligent and caring, he never complained, just continued to do his best under circumstances that silenced my own small complaints. I felt such respect for his courage as I did for all the people in the group.
Ron and I became friends. He was upfront about his wish to love someone, describing what life would be like if one were to live with him, such as sleeping with his breathing machine. I had such admiration for him that I considered this relationship, but had enough to take care of already; this did not fit my own needs.
This night I wanted to come to the dance because I knew that with these people I could do whatever I felt up to doing or not doing, without embarrassment. Dancing was in my heart but my curvature made standing on my feet difficult and painful, let alone dancing. Yet strangely, I still could never quite see it – that yes, I am handicapped! How many dance classes had I started and dropped because they were too hard? Polish polka dancing, Appalachian clogging, Irish step dancing, Scottish country dancing and the Highland Fling (where I’d broken my steel arch support). Even Hawaiian dancing had been hard because I had to take off my orthopedic shoes and dance in my flat feet. I was coming to this event by instinct and the longing to dance, but my brain still didn’t admit that this was my tribe.
The event was being held at Oakton Community College, located back in the beautiful woods along Golf Road. As with all handicapped people, I was anxious to park where I wouldn’t have to walk too far, but I had no idea where on the campus the dance was being held. After randomly parking somewhere and walking with difficulty through many halls, I found the room. To my surprise it was a large ballroom and packed with people. Evidently the network of handicapped people that Ron’s newsletter reached was much larger than our small monthly group.
No one looked familiar, so grabbing a bottle of pop and I sat down at a the nearest table. The room was not decorated but was well lit and just the right size for the crowd: plenty of room to dance but not so spacey to leave anyone feeling alone.
The room was filled with much chattering, excited energy, and a happy feeling. I surveyed the gathering. People were dressed in street clothes and jeans, nothing fancy, expensive, or even western. Many people were in groups with group leaders while others seemed to be with family or friends.
The band warmed up and began to play. Immediately I realized that these people were not going to be doing the normal line dancing – “Slapping Leather,” “Bootin’ Scootin’ Boogie,” and other fast-foot dances. Nor were they going to glide as couples elegantly around the edge of the floor in cowboy-style waltzing. They could hardly stand up, probably not even do the slow zipper-melting, buckle-polishing body-to-body dance/walk that couples did at bars. Nope. This crowd was not going to do anything fancy at all, but they were going to have a good time.
The band was fantastic; I could see from their smiles and enthusiastic music that they received great joy from playing for this crowd. In spite of how these people looked, they were normal. Like everyone else in the world, they wanted to move their bodies to good music, to be revitalized by movement and rhythm, to express and experience joy in being alive. For some it took heroic effort because their bodies did not easily do what their spirits so wanted to do. People got out and stood on the floor and mostly moved the upper halves of their bodies. Everyone just did whatever they could. Many held the hand of someone beside them, perhaps encouraging each other, or perhaps just enjoying the feeling of belonging in the human community.
Off to one side was a circle of deaf people who stood right in front of the five foot high speakers, seeming to feel the beat. They moved in interesting ways, different from the rest of the crowd, and they talked to each other with sign language while they laughed and danced.
There were people on scooters who rode onto the floor and waved their arms around while sitting. Some danced as couples; the standing one would grab the hands of the seated person and jump around with the seated one laughing and moving any way possible.
A few groups had lovely youngish women with them who would drag some of their group onto the floor and dance with them, smiling wholeheartedly, glad to help them have fun. After watching a bit as an outsider, I finally got up, went onto the floor, and like everyone else, just moved to the music – nothing special, just pure natural response to great rhythm and sound.
Eventually the band took a break. I wandered around looking for Ron. This was his night, he would surely be here. Someone told me Ron and his wife were taking tickets on the other side of the ballroom. Then I remembered that he’d announced in a newsletter that he’d married. He was on a scooter over at one side of the room, surrounded by people. His health had clearly deteriorated. It wasn’t hard to identify his wife. Joy was a non-handicapped woman who showed on her lovely face that she was clearly proud to be married to such a fine person.
Ron was busy with his responsibilities and the many people needing his attention, so I wandered around in the hallway, then back into the ballroom. The band was warming up again, and soon they were playing in full swing, their music inviting our bodies to come and move. I leaned then into my identity as a “normal” non-handicapped person and became one of the “responsible” caretakers trying to get shy people out on the floor. The first person I approached declined but I succeeded with the next one. The woman and I danced beside each other and enjoyed ourselves.
A young man on a scooter was sitting on the sidelines, swaying to the music alone. I went over and grabbed his hands to dance with him. He responded with enthusiasm. As the music went on he actually got up on his feet, stood on his scooter, and continued to hold my hands and sway. When the song ended, we talked a bit. Another really nice person living a difficult life.
The groups on the floor morphed around so I found myself dancing with any number of people, individuals and circles. Before I knew it and to my surprise, the end of the evening arrived as the band played their final joyful, wild finale. Then we all reluctantly donned our coats and headed chatting down the halls, wandering out to find our cars.
Strangely now, as I drove home I felt more normal than I had in a long time. I had given in and participated as one of this group, as a handicapped person. Having accepted both of my contrary identities, handicapped and non, I felt at peace. And the music and joy had given me a vacation from my sadness and worries. I drove home emotionally relaxed by the self-acceptance, while my body felt rejuvenated by the joyful movement to music.

Someday


Someday I’ll read all these 280 books on my shelves.
And then, after that,  Someday
I’ll mark every photograph in
those five bank boxes, plus the one in the garage,
with dates and identities
for the sake of the grandkids.
I’m going to one-of-these-days develop a
whole chronology of my life
because I can’t remember the years
when things happened.
And then I’m going to clean off my computer and toss
these 1300 old emails, but
I have to read them first.
I have about seven boxes marked “family mementos” which
Someday I really should go through and
see what they are.
But the old financial records – they really must
get sorted and organized and tossed or shredded.
There are family histories from several different branches of the family tree
 that should just be gathered together into one place.
I’d like to go back to Sweden Someday and maybe Ireland, too; they were delightful,
but I also haven’t seen Germany or England yet.
But tomorrow I have to return a faucet handle to the hardware,
buy groceries and cook some chicken,
also cook the whole cauliflower before it spoils,
and do at least one load of laundry, water the plants,
pay the tax estimates and
balance the checking account. I really should
call Graciella: she needs encouragement.
I’ll have to wait till Wednesday to start
marking the photographs or
sorting mementos.
 Whoops, – doctors appointment on Wednesday.
If I have any energy left tonight after washing dishes
and reading emails, I’ll start one of those 280
books I want to read.
Oh yes.  I still could start working on my PhD.!
Also, Someday I’m going to
 lose 20 pounds.

The End

THE END                Jan. 26, 2020
#1
Struck!  In the mountains of New Mexico.
Flown home in  small swift jet.
He’s in special care now, special place.
Each dawn I fight the traffic,
spend each day speaking for the silent one,
reading eyes,
guarding care of him who’s struck.
Exhausted
I fight to get back home.
Doorstep box!
Silver foil keeping warm a meat,
plastic showing smiling muffin,
bowl of greens, cup of pudding.
My eyes tear up to feel the shawl of care on me.
Each day a box,
each day a different meal,
each day tears and rest.
Tonight I sleep.
Tomorrow back,
my tank of care refilled to give.


#2
Worn out, I fall asleep on folding sofa.
But tumble up in night to turn him over
avoiding bedsores.
Now,
  up,
    again.
His body slides, toes crunch;
I stand behind, grab the sheet beneath his arms,
  yank him up again.
He weighs 60# more than me,
  me 4’ 10”.
He cannot move a muscle of his own;
his eyes say “Thanks.”
My day begins.
The aide – no show, just quit.
I’m on my own today until I find and train new help, small pay.
I love him.
Against all odds, I fight to keep him with me.
How long can he hang on?
How long can I hang on?


#3  Letting Go
Hanging on too long
   we are.
My body says “Let go.
Let go – I want to live.
Let the dying go.”
“NO!
NO NO NO NO!”
He sees and knows
and he lets go.