Tag: disabilities

Now I become myself.  It’s taken
Time, many years and places;
I have been dissolved and shaken,
Worn other people’s faces,
Now to stand still, to be here,
Feel my own weight and density!

All fuses now, falls into place
From wish to action, word to silence,
My work, my love, my time, my face
Gathered into one intense
Gesture of growing like a plant.
Now there is time and Time is young.
Stand still, stand still, and stop the sun!
~May Sarton from “Now I Become Myself”

My grade school took part in an educational experiment in the early 1960’s. It was one of the first schools to mainstream special needs children into “regular” classrooms. At that time, the usual approach was to put kids with disabilities in separate rooms, if not entirely separate schools.

During those years, the average class size for a grade school teacher was 32-35 kids, with no teacher’s aides, rare parent volunteers, (except for field trips and room mothers who threw the holiday parties) and no medications or special accommodations for ADHD or dyslexia. I’m not sure how teachers coped with nearly three dozen noisy disruptive kids, but somehow they managed to teach in spite of the obstacles. Adding in children with mental and physical challenges without additional adult help must have been very difficult.

So some kids got recruited to help out the kids with disabilities. It helped the teacher by creating a buddy system for the special needs kids who might need help with class work or who might have difficulty getting around.

I was assigned to Michael so our desks were side by side for the year. He was a thin little boy with cerebral palsy and hearing aids, thick glasses hooked with a wide band around the back of his head, and spastic muscles never going where he wanted them to go. He could not remain still, try as he might. He walked independently with some difficulty, mostly on his tiptoes because of his shortened leg tendons, frequently falling when he got going too quickly. His thick orthopedic shoes with leg braces would trip him up. His hands were intermittently in a grip of contracted muscles, and his face was always contorting and grimacing. He drooled a lot, so perpetually carried a Kleenex in his hand to catch the drips of spit that ran out of his mouth and dropped on his desk, threatening to spoil his coloring and writing papers.

His speech consisted of all vowels, as his tongue couldn’t quite connect with his teeth or palate to sound out the consonants, so it took some time and patience to understand what he said. He could write with great effort, gripping the pencil awkwardly in his tight palm and found he could communicate better at times on paper than by talking.

I made sure he had help to finish assignments if his muscles were too tight to write, and I learned his speech so I could interpret for the teacher. He was brave and bright, with a finer mind than most of the kids in our class. He loved a good joke and his little body would shudder as he roared his appreciation. I was always impressed at how he expressed himself and how little bitterness he had about his limitations. He was the most articulate inarticulate person I had ever met.

As Michael appeared around the corner of the grade school building every morning, he would walk quickly in his careful tip-toe cadence, arms flailing, shoes scuffing, raising up dust with each step. He would wave at me and call out my name in his indecipherable voice.

Once, as he approached, a group of kids playing tag swooped past him, purposely a little too close, spinning him off his feet like a top and onto the ground. Glasses askew, he lay momentarily still, and realizing I was needed, I ran to help him up. Despite all he endured, I never saw Michael cry, not even once, not even when he fell down hard. When he got angry or frustrated, he’d get very quiet. His muscles would tense up so much he would go into even greater spasms.

I had no tolerance for anyone who bullied him. I could see the pain in his grimacing face. Although he would give me a huge toothy smile of thanks, his eyes, as usual, said what his mouth could not. Michael knew I needed him as much as he needed me. I relished my new role as the life preserver thrown to him as he struggled to stay afloat in a sea of classroom hostility.

There were many times when I resented being teased by other students about Michael being my boyfriend. Although he would blush bright red when he heard that, Michael really had become a good friend, who just happened to be a boy.

The following academic year, he moved to another school district, so I never saw Michael again. However, I heard him on local radio six years later, reading an essay he’d written for the county Voice of Democracy contest on what it meant to be a free citizen. His essay was one of the top three award winners that year. I was amazed at how understandable his speaking voice had become.

Years later, I went on to medical school, learning from patients who lived with even far greater limitations than Michael. I realized that my initial training in compassionate care had been as I sat by his side helping him navigate 5th grade. He showed me how important it was to take the time to understand his voice and his heart when others would or could not.

I didn’t appreciate it then as I do now, but he taught me far more than I ever taught him: patience, perseverance and respect for the journey through obstacles rather than focusing just on the destination.

He helped me surpass my own less visible limitations. I was his special friend – one who just happened to be a girl.

So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.
Galatians 6:9

This Lenten season I reflect on the words of the 19th century southern spiritual hymn “What Wondrous Love is This”